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"Plaisirs Coupables," by Amélie du Petit Thouars

While creating, "Plaisirs Coupables," Amelie du Petit Thouars faced death when her mother died of cancer and during the Paris terror attacks. In this interview, Amelie discusses how these events affected her creative life and tells us the specific inspiration behind her pieces.

AdPT: HS: When did you start to incorporate death themes into your art and why?

AdPT: I've always been fascinated by this imagery as I've been surrounded by it my whole life. I grew up surrounded by paintings, drawings or sculptures depicting these kind of themes, so it's part of my life! My parents were big Opera fans (lots of drama there) and took me with them to visit the "classic paintings" in Paris or wherever they traveled and to different churches, etc. I didn't understand the significance of these pieces but I knew I was drawn to them very early on.

I've really begun to incorporate death themes when I started this series of drawings, Plaisirs Coupables, back in 2007. Before that, I was in art school and I was stuck with all the assignments we were given. We didn't have much room to really showcase who we were as it was a graphic design course. I started to explore and draw what I liked once I had digested my education and training.

HS: What is your perspective on thinking about death— does it comfort you to think about mortality, or is it disturbing?

AdPT: I'm not really scared of mortality. I grew up catholic (I'm agnostic now) so it's pretty much part of the whole experience of being catholic. Death, the afterlife, etc. I think the thought of our own mortality should drive us in life to accomplish the best and really go for it. It's certainly not disturbing. It's just there. Ultimately, I find that it would be more painful to lose the memories associated with loved ones, than the natural course of death.

HS: Does creating these drawings allow you to confront death or are you creating them for another reason?

AdPT: These drawings have definitely been cathartic for me. They have helped me process different moments in my life that were difficult but not always linked to death. They help me focus and have a hypnotic quality when I make them. My mind goes blank and I forget everything else. It's very soothing but very consuming at the same time. When my mother died of cancer 4 years ago, I felt I really need to finish the series and try to showcase it because I know she would have been proud to see the result. So, it pushed me to finish my work and not disperse myself. I was able to "bury" myself with the time-consuming quality of these drawings.

HS: Have you had any close encounters with death in your life— either near death experiences or people or pets dying? Have they affected your art or how you see the world?

AdPT: I live in Paris, France. On November 13, 2015, we were struck by several acts of terrorism. I was at the EODM concert at the Bataclan with my best friend. We were very fortunate to both get out unharmed but I guess I saw death right here and there. It had a mixed effect on my work: it pushed me to find the energy to create a crowdfunding campaign to print my first fanzine and have my first showcase but I was totally unable to create new pieces. I'm only now starting to have new ideas for drawings again. It's like the creative part of my brain had been shut down for a while, I only saw a wall or a blank page. I'm a graphic designer by trade and going back to work after this was very difficult. We had lost our "juice" and were only able to accomplish repetitive tasks. After a while, it came back but it's been tougher to create new drawings. Right now, I'm trying to work on a book/fanzine to show this process of coming back to a creative life. As for how I see the world, I feel like it's even more absurd than ever and random, but I still want to create stuff and get it out there!

HS: You use supernatural, mythological, and natural symbols of life and death in your work (Chimère, Ouroboros, maggots), what about these symbols are significant to you?

AdPT: I am fascinated by the symbols that men have created to explain the universe or by the magical power they have given to them to protect themselves. I love reading about how these symbols were created and how they've managed to exist throughout the ages and how you can find them in different civilizations.They give you a key to understanding the history of humanity in a magical way. I used to have a dictionary of greek myths when I was a kid and would read it over and over again. Now I'm obsessed with alchemy. It's incredible because it's connected to so many things: history, science, religion, mysticism, biology, etc. I love incorporating and playing with these symbols to create something magical and almost mysterious. 

HS: What is your process for composing a particular death-related piece? Is it organic? Are you regularly thinking about these themes? Something else?

AdPT: I always start with an image or a dream that comes to my mind. It comes up and I play with it. It's very hazy, I can't quite explain it. Usually, it comes quite quickly. If I have to sketch too much I find that it won't end up working. 

HS: For your piece L'écorché, will you translate the title to English? What is the significance of the head area being splayed out? It's almost auric.

AdPT: "Écorché" literally means "skinned". It sounds gruesome but this piece is directly inspired by old anatomical drawings given to medical students. The one I used is, if I'm not mistaken, of the nervous system. So what it represents is your entire nervous system spread out, it's an educational tool ;). I've always been fascinated by the intricacy, delicacy and slight gruesomeness of these scientific plates. I also love the similarities between how our bodies are designed and how plants grow so when I saw these original drawings, I couldn't help but think about plants and ropes and how we all swarm and shimmer like the nature that surrounds us. I enjoyed mixing scientific codes and almost mystical imagery for this drawing.

AdPT: Chimère really started with a sketch of an open heart and all the insects crawling in it. I then had this idea of showing it. In French "a coeur ouvert" means "open heart" and means you're revealing yourself. And as for the owl, it's just a magical and majestic nocturnal animal that seemed to fit well!

AdPT: Ouroboros is directly inspired by the old school Christian "vanities" that people had in their houses to reflect on what was truly important in life. I wanted to play with the symbols and really exaggerate the imagery. Make it almost cartoonish. And I loved incorporating all these tiny details. It's a way of creating a story inside the drawing.

AdPT: Nature Morte came to me as a weird and creepy "vision" of eyes really peering at you through these fragile yet intense flowers. The medallion shape is a very traditional shape you find in a lot of classic paintings. So again, it's my way of playing with very traditional classic codes.


Amélie du Petit Thouars is an art director, graphic designer, and illustrator based in Paris, France. Her pieces have been shown in Paris, Geneva, Istanbul, and Madrid. You can view more of her work on her website and on her Instagram.

“In Lieu of Flowers” — Paintings Questioning Western Mourning Customs by Patrick Morris
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When Patrick Morris’s parents were diagnosed with terminal illnesses, he was forced to navigate the flawed mourning customs we have in the West. Instead of avoiding the grief and existential weight of death, he explored his experiences in his paintings.

HS: When did you start to incorporate death themes into your art and why? 

PM: I started working on this series, In Lieu of Flowers, about a year and a half ago, when my dad was first diagnosed with a fatal disease.

About four years earlier, my Mom had died. She died from complications due to cancer, only three weeks from when she was first hospitalized for stomach pain.

In the midst of losing my second parent, I decided to confront death with my paintings. Death makes one feel so powerless, but I chose to explore that rather than push it away.

HS: Does contemplating death comfort or unsettle you? 

PM: It’s healthy to contemplate death. Thinking about death can totally be unsettling, which is why most people avoid it their whole life. But then they have regrets. The best we can do is to be open to it, to ask questions, and to accept what is unknown. It may sound strange, but the more I open up to death, the more I feel at peace with death.

HS: Are you making this work to work on your relationship with death, or is it social commentary on grieving customs— or something else entirely? 

PM: I do both. In Lieu of Flowers dealt with my parents’ mortalities. But I’m also critiquing the American funeral industry in my paintings. Obviously, the funeral industry preys on vulnerable people when they’re in need. It’s greedy, it’s dishonest, and it needs to change. I believe it will.*

While exploring that aspect of death, I learned about new rituals and new possibilities for the disposal of human remains. Some examples are green burial and the Urban Death Project.

HS: What intrigues you about mourning customs?

PM: My parents both opted for open caskets, which I find problematic— the toxic chemicals, embalming tools such as the trocar, sewing the jaw shut, spooky cosmetics… My wife is from Norway, and it’s interesting to see her reaction to the American traditions. In Norway, embalming is pretty much non-existent. Nevertheless, the undertaker will let you see the body of your family member if you want to. They keep the body in a cold room.

The body is placed in a wooden casket, and that goes directly into the ground (as opposed to air-tight caskets made of steel, or expensive cement vaulting). Another difference is the sheer beauty of the cemeteries in Norway.

Fresh flowers are regularly maintained by family members, and around Christmas-time, many families put lit candles in front of the headstones. It's more civilized than draining blood, more respectful than vacuuming out the intestines, and more environmentally responsible than poisoning the earth with Formaldehyde.

HS: Is there something you are trying to convey to your audience through your paintings?

PM: The paintings are just as much about paint as they are about content, which has recently been on death. I love mixing colors and the abstract qualities of paint. If people appreciate the layering and the brush strokes, that makes me happy. I also like when people come up with stories from these paintings. I use specific color combinations. They are supposed to reflect the energy of the subject matter.

HS: Are the people in your paintings significant to you? Are they people you know? Why did you choose their images?

PM: Yes, they are people who I care about. My models have been close friends, fellow artists who I respect, and my two sisters. For this series, I wanted to tap into that knowledge that I’ll miss these people when they die. By creating pseudo-mourning portraits, I could spend more time with those who I care about, and that led to interesting conversations about death.

I love your use of bold color and how the figures are often the only aspect of your paintings that are depicted with realism. Can you discuss your aesthetic choices? 
Thank you. Color is the most significant aspect of the medium. What I respond to most while looking at other people's paintings is color. It's exciting when light and hue will capture a certain energy. It has to do with temporary states, the fleeting color combinations that surround us.

I am drawn to the figure and realism. I put that realism next to the flat, simplified, more abstract nature of the art form because I want the viewer to know this is a painting. In Lieu of Flowers has a heavily graphic style, cartoony at times. I wanted to contrast the heavy subject matter with something more playful. I also used more vibrant, bolder color choices in these paintings in order to counter the somber subject matter.


Artist’s Statement for Patrick Morris, “In Lieu of Flowers”

I make paintings out of love for color, and I make paintings because it is by making things that I find meaning. In my paintings, I base colors off of things that are really in my life, like a beautiful pair of shoes or a favorite tablecloth. The act of painting takes patience, is challenging, and is best when it’s playful.

Before I begin a painting, I make drawings, take photos, and create color studies in order to distil my idea. I stage photographs of people who I care about with the intent to use them as references in my work. I trust my instincts when I begin to paint, and I engage with my paintings along the way, almost as though we’re having a conversation.

Throughout my work, I explore color, the figure, and flatness. My recent paintings continue with those themes and introduce the subject of death. Last October, my dad was diagnosed with a fatal disease, Idiopathic Pulmonary Fibrosis. I did not know how much longer he would live, and his looming death pervaded my thoughts. ‘In Lieu of Flowers’ hints at a narrative about death and mourning, using a backdrop of domestic customs of death (’Selecting A Casket,’ ‘Embalmer,’ and ’The Eulogy’). I became interested in outmoded mourning customs, such as mourning portraiture and post-mortem photography, in which the deceased were painted and photographed to memorialize the dead. These customs held significance for the bereaved at that time, but from another generation’s perspective, it feels unsettling and alien. These same observations can be applied to our current customs such as embalming, the open casket, and interment in extravagant, ‘cutting edge’ cemeteries.

I am a painter in Los Angeles, California and I got my BFA in Painting/Drawing from California College of the Arts.

Instagram: @patrickmuseum
Website: patrickmuseum.com


*There are funeral homes working on taking greed out of the funeral industry. For example, Undertaking LA.

Little Wounds— A Celebration of the Beginning and the End of Life

Little Wounds is where the illustrator Daphne Deitchman share's her cute, yet dark work. She self-describes her art as, "A celebration of the beginning and the end of life." Read her interview and see her work below:

HS: When did you start incorporating death and decomposition into your artwork? 

DD: I began incorporating death around 2013, in college, although I've been fascinated by death ever since I can remember. I started incorporating decomposition at the end of 2015, after my pet rat died (a small but devastating death). I buried him in a little eucalyptus forest. I wanted to make his death as beautiful and loving as possible, and I ended up feeling a lot of anxiety about what was going to happen to his body. I had an urge to preserve him, but it's all part of the life cycle for our bodies to decay and feed future life. I find that really amazing and beautiful. And it helped me accept the loss. Since then I've been incorporating decomposition into my artwork as well.

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HS: What about those subjects piqued your interested?

DD: I think the fact that death is the ultimate unknown makes it very interesting. We will all experience death, we will all lose family and friends. Just like taking a breath, all human life (and animal life) endures it. I think many people do not want to accept that our lives will end someday (I can relate), but knowing life in impermanent makes it so much sweeter. I noted some of my interest in decomposition above. I also love science, so decomposition is just super great to study.

HS: Why do you juxtapose the darkness of decomposition, death, and unborn animals with cuteness?

DD: I use cuteness to disarm the morbid subject matter, to help bring people into a place where they can experience death in a manageable and ideally positive way. I sometimes wonder if it reflects my own inability to fully look at death for what it is, but it's all part of the journey. My work may trend more towards the grotesque as I keep at it haha. And as for unborn animals, I actually just find them adorable.

HS: What inspired you to draw the presidential candidates decomposing?

DD: This was such a fun project!! I struggled to find interest in the election, so this series was a way to connect with such an important current event. I just find politics to be frustrating. Super powerful people pining to be elected to be even more powerful; it's sickening. But, these people are all going to have the same end that we all inevitably do. No man is more powerful than death. So that's where that began. This was also an opportunity to study different symbols of death, such as monarchs and poppies. I also knew that there could only be one candidate elected, so depicting them dying would be a good metaphor for their defeat. 

HS: What is the significance of animal fetuses in your work?

DD: I am drawn to animal fetuses for so many reasons. Firstly, because they seem impossible. I truly don't know how such a delicate thing could grow into what we know of as animals. Secondly, I love thinking about the sides of life that we don't consciously experience. Just like death, so much is unknown about birth and consciousness. When does our consciousness form? How does it form? How are these cells pulled together just right to form a cow? Thirdly, I think they are beautiful, and I want to show others that beauty. 


Check out more of Daphne's work on her Instagram page and make sure to visit her shop where you can buy prints of her work and lapel pins.

Crime Scenes— Fine Art Photography by Virginia Conesa-O’Gara
Crime Scene: Pool by Virginia Conesa-O’Gara

Crime Scene: Pool by Virginia Conesa-O’Gara

HS: Do you remember when you first had the inspiration to take photographs of women killed by crime?

VC: The first draw had to be when I saw a book by Luc Sante called ‘Evidence’. Sante had collected rare crime scene photography from New York in the 1920s. The images transcended the violence into an almost visual poetry.

Crime Scene: Desert Rose by Virginia Conesa-O’Gara

Crime Scene: Desert Rose by Virginia Conesa-O’Gara

HS: What drew you to this concept?

VC: Initially, I was driven by the desire to create images of women that were ambiguously posed. I played with the line between objectified feminine and an actual victim as subject. I also used the theme to work on visual compositions.

Crime Scene: Mena by Virginia Conesa-O’Gara

Crime Scene: Mena by Virginia Conesa-O’Gara

HS: Why were you interested in murders versus theft or vandalism?

VC: In retrospect, because these images are from the 90s and from this vantage point so much has been revealed, I was interested in the victimized feminine archetype. I felt totally disempowered in my feminine— quite literally victimized. I created the images in an almost repetitive and possessive manner, obsessed with seeing my internal experience exteriorized. Every one of the women in those images was me, or at least an important part of my psyche.

Crime Scene: Channon 2 by Virginia Conesa-O’Gara

Crime Scene: Channon 2 by Virginia Conesa-O’Gara

HS: Did you feel like you were confronting mortality through these photos? Or processing the randomness of crime — that it could happen at any moment? Something entirely different?

VC: I don’t think the images were about a literal death confrontation or a death wish. Psychologically, the victim archetype had a strong hold in my life. The voiceless, lifeless, objectified feminine seemed to have been felt in my psyche as if it was murder, violent and final. These photos were about a psychological reality I was confronting at the time.

Crime Scene: Channon by Virginia Conesa-O’Gara

Crime Scene: Channon by Virginia Conesa-O’Gara

Crime Scene: Koshtra by Virginia Conesa-O’Gara

Crime Scene: Koshtra by Virginia Conesa-O’Gara

Crime Scene: Bride by Virginia Conesa-O’Gara

Crime Scene: Bride by Virginia Conesa-O’Gara

Crime Scene: Park Avenue by Virginia Conesa-O’Gara

Crime Scene: Park Avenue by Virginia Conesa-O’Gara

HS: Explain about the murders that got you to change from passive victims to victims standing up confronting the camera?

VC: So a very important move, both in my art as well as psychologically, was the second part of the series titled ‘Juarez’. This series of images were based on actual murders that happened in the border city of Juarez, Mexico. The socio-political climate at the time created an atmosphere were hundreds of violent crimes against women were occurring, unsolved and unpunished. I traveled to Juarez and saw the case files with actual photos, evidence, and interviewed local players involved in the phenomena. This led me to a very up front and personal confrontation with the violence of being a victim of crime. It shook me to my core. I could no longer re-create the scenes and leave the models as victims. I asked them to stand up and look directly at the camera, defy the viewer, stare back at their assailant.

Juarez: Linda by Virginia Conesa-O’Gara

Juarez: Linda by Virginia Conesa-O’Gara

HS: What about this crime inspired you to have the models be active instead of passive victims?

VC: I think what had happened is that the part of me that identified with the victim had transformed. I didn’t need to see an image of victim to mirror the psychic process in my soul. The transformation of the archetype forced the image to change. What I wanted to see then was the defiance and survival of the feminine, despite the annihilating violence she was subjected to.

Juarez: Pancha by Virginia Conesa-O’Gara

Juarez: Pancha by Virginia Conesa-O’Gara

HS: Did the process of making these images change who you are?

VC: Yes! I believe that we create the images we need to see. The externalized images are there to mirror parts of us that need relating to, that have been in the shadow parts of our psyche and through image ask us for recognition. I believe that art images are powerful because they come from autonomous parts of our unconscious that have an impulse and desire of their own. It is no coincidence that I created the crimes scenes for years, transformed the images internally and externally, and never touched the subject matter again. I have new material that grips me now, but the victim has been seen, honored. Im happy to have given her the attention she needed.

Juarez: Veronica Legs by Virginia Conesa-O’Gara

Juarez: Veronica Legs by Virginia Conesa-O’Gara

HS: What’s the value of interacting with darkness (from an art and therapy perspective)?

VC: The value of working with dark, or shadow aspects is that this is the way the unconscious makes its first attempt at communicating to consciousness. It's through the distasteful, repulsive, frightening, possessive, shadow (dark) feelings, thoughts or behaviors that we hear first from our psyche. Our job is to not judge these parts of ourselves. And artists are so lucky, because we can always work with the dark through image. The image makes it bearable and tolerable and the dialogue can begin. Underneath the darkness is light, and then more dark, and light again.

Juarez: Lily by Virginia Conesa-O’Gara

Juarez: Lily by Virginia Conesa-O’Gara

Juarez: Michelle by Virginia Conesa-O’Gara

Juarez: Michelle by Virginia Conesa-O’Gara


Virginia is a photographer and therapist based in Southern California. She got her BFA in Photography from Art Center and her MA in Counseling Psychology from Pacifica University. She has shown in New York, LA, Mexico and more. To see her work visit her website, theriverswife.tumblr.com, and Instagram, @virginiaconesa.

Alzheimer's, the Death of a Relationship— An Interview with Colleen Longo Collins

Colleen Longo Collins loves her grandmother as much as it is possible for one human to love another, and her grandmother loves Colleen unconditionally. Colleen’s grandmother grew up in the French Riviera, in Cannes, moved to Santa Barbara in her early 20s, and made a career for herself in the LA fashion world. Growing up, Colleen took refuge at her grandmother’s house because her mother was creating a career and her father was emotionally unstable. In her grandma, Colleen found a person who was always had time to hear about her life, to paint her nails, to look through closets of clothes from around the world. Her grandma modeled femininity for her, but more importantly modeled love. Without further ado an edited interview with Colleen Longo Collins:

Photos by Colleen Longo Collins @tenaciousnostalgia

Photos by Colleen Longo Collins @tenaciousnostalgia

CLC: She would pick me up from school in her little two-door, old-school, champagne-colored Mercedes that had sheepskin seat covers. We would listen to soundtracks of the chorus line and she would take me to my favorite restaurant to get a Shirley Temple. There were these very key moments of being with her that really felt like a very loving childhood. It was very far away from the sea saw of what was really going on at home for me. Then in high school, we would make time to see each other because I lived in Alameda and she lives in LA. Either she would fly up or I would fly down. Then when I went to college at Humboldt and I think I change my major five times in my first year of school.

HS: Really? What from?

CLC: When I went into college I was a religious studies major. I took a couple of religion classes and I developed some relationships with the advisors. Then I was like, “No, not really into this.” From there I went into my french major and, oh, my grandmother was so excited because I didn’t take french in high school I took Spanish. High school was just not really about school for me. I was way more interested in social activities than classes.

It was kind of like, “Okay I’m going to do this. I’m going to learn french.” We started developing a weekly chat so she could help me with my homework and she would speak french to me. That was really sweet. That was my sophomore year, and because of the major change I had decided to do a year abroad. I had applied to the program which just so happened to be in Aix-en-Provence which is in the South of France. My mother also did a couple years of college there, so it was really special and sweet to feel like this tradition happening there. Of course, Aix is only about 45 minutes from Cannes so my grandma knew all about it. My junior year I left to move to the South of France.

Interestingly enough, as we’re talking about death, about a month after I left a friend from home died. I was 19 and one of my good guy friends from high school got diagnosed with some awful stomach cancer when he was 17. He went into remission and then it came back. I think the month after I left and was living in France, he passed away. Here I am in this foreign country, don’t speak the language, don’t know anybody, and one of my friends dies from home. I had nobody to mourn with. It was a very dark couple of months for me. I was very depressed and I didn’t want to learn. I was very resistant to learning this language because I just couldn’t get it. It was a very sad time. 

That was my first real introduction to building a relationship with death. It took over the year, but I finally had a couple friends visit me, and then I ended up in Ibiza at the end of the following summer. I had two of my girlfriends, Michelle and Katy, that visited me. They were also very close with my friend Chris, who had passed away. We finally had, not a seance, but a meeting. We were all torn up about Chris and we just started to talk about building a relationship with death— what does that mean and what does that look like? That helped to start to process the grieving stages and pull myself out of the darkness. It felt like a tangible way of honoring him. That’s what we did. 

Anyway, my grandmother came to visit me in Aix. We had a week together there. We walked around went to Cannes, visited her friends there. It was just really magical. At the time, I remember thinking how special that, “God, I’m nineteen years old and I’m traveling in France with my grandmother.” It was very cool. Then we went to Paris for a week and then she flew back to California and I met up with a friend in Amsterdam. I had spent two weeks with her and it was so special. I’ll never forget that trip.

Then I came back. I had taken a photography class in my second semester of my sophomore year but I was not an art major. However, when I was in France I took some community photography classes as well. When I came back I met with Don, who was my photography teacher from class 1, and he told me, “I think you have a really good eye. I’ll mentor you. You can do direct studies with me.” I was just like okay I’ll become a studio art major. Because I was in France for a year I had enough french classes to have a french minor. I ended up with a studio art major and a french minor.

Then graduation happened and she came out for that. Then I was like, “Okay, I got into grad school. I’m moving to New York.” I moved to New York in 2003 and we just continued to, of course, talk on the phone and see each other on holidays.

In February of 2010, my uncle passed away— my grandmother’s son. He had been struggling with alcoholism for almost two decades. He would be dry for five, six, seven, eight years and then relapse. It was very sad, very awful, saddest for my grandma. I mean she just bent over backward for him, would go to AA meetings with him, pray for him, all of these things. Eventually, it just took him. It wasn’t even like him and I were that close. He would send me a birthday card. I would see him at Christmas. He was very nice but we didn’t have a close relationship by any means. It was a weird point because when he died, I was like, “Okay, I give up on New York.” It was very weird how that influenced my wanting to leave. Again, I wasn’t really close to him. It was just the straw that broke the camels back. I was done. 

I had just been in Humboldt for that New Years. I had decided to craft this plan with Paul and Julie Jo, to do WWOOF-ing on their farm. It was very serendipitous. I knew I had to come to California, on multiple levels. I didn’t know if I was really done-done with New York but I knew I wanted a year break. I moved back in September 2010 and lived on the farm for a little over six months. Then Britta and I shacked up together and moved into Westhaven.

Right around then is when I started to see things were off with my grandmother. I can’t remember if there was a phone call— I think it was a visit. I had gone down for a visit and I was staying at my grandma’s. While she was trying to find plans for this apartment building that she had, she got so frustrated. All of a sudden, she was angry with me. I remember thinking, “Why is grandma wigging out? What’s going on? I’ve never seen this?” I tried to calm her down, and then like we got into a really silly fight. I just wanted to be a bitch and then she came in kind of crying. Of course, I felt awful. I just remember that interaction being so strange and so out of character. She was still living by herself, still cooking for herself, and still taking care of herself, but I had started to notice a couple of weird things. She was going over to the neighbors to use their microwave when her microwave worked just fine. She was putting toasted toast in a drawer in the kitchen.

When Britta and I had been at the Westhaven house for a year, I arranged with my mom to have her and my grandma come to visit and to see the place. My mom got my grandma up there. At this time we had the first family conversation to say, “Does she want to go talk to somebody?” We were thinking a therapist. That’s when we started to notice everything. She didn’t remember what room she was sleeping in. It was starting to happen. That was probably the end of 2010, beginning of 2011. 

That January my mom took my grandma to the doctor who ran a series of questions. She totally failed it. Couldn’t remember what year it was. Couldn’t remember who the president was. I don’t know how it was for my mom, but when I heard all of that— it was really really sad, and that’s when it started.

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HS: What was going through your head when you realized that she had Alzheimer’s? Did you understand what would happen?

CLC: I feel like there were two things going on. There was the super-anal-Virgo-get-shit-done-let’s-take-care-of-business mode that took over. “Okay mom, what are we going to do? Do we need to get her on drugs? Do we need to get her brain tester classes or books? Let’s get her a big calendar, so she can see things. Let’s write notes all over the house so she can see things.” I was being very logistical about how to remedy the situation. Then there was like the other little scenario, “That’s it. She’s done. She’s not going to remember who I am.” I felt like slowing down time or like boom it’s done, it’s over. 

What actually happens, or happened to us and I’ve read happens to others, is that it’s a very slow process. For the first year, it was all about my mom and I getting her to really understand what was going on. “This is happening. You can’t drive anymore grandma. You can’t. You just can’t drive anymore.” 

Label maker everything. Go down, make seven meals for the week, so she could just pull something out and eat it. Then we started to have somebody come from like nine to five three days a week. When we started to have that, that’s when all of these other things started like sprouting up. The first caretaker could never get into the house. Then the second caretaker would always get kicked out. She would be there for awhile and then my grandma would be like, “Okay, goodbye.” So that was the first round of caretakers. It was very part time. Then she started losing a lot of weight. She’s always been svelte, but she got real skinny. 

Then there was a shift. There was a lot of resisting because she didn’t know what was going on. Even when you talk to her about it, she would kind of be with youbut then disappear. There started to be a lot more of the stuffing things around the house. We couldn’t find her diamond earrings because she had wadded them up in a kleenex and thrown them away. She would go to the Wells Fargo, pull out like $3000 and then hide the cash in the house, and of course, forget about it.

HS: Is that something that’s normal with Alzheimer’s?

CLC: Absolutely, there is definitely a phase with Alzheimer’s where money goes out the door. They all of a sudden get very generous. Of course, this causes lots of problems. They give people, strangers, anything, everything. 

Then you’d open up drawers and there would be the most random shit in there— a coffee mug with coffee in it, in a drawer with sweaters. Very strange, everything was very strange in the house. My mom and I learned very quickly that she was going to need full-time care. Since my mom lives up north, I was up in Humboldt, and she’s down in LA, it wasn’t like we knew anyone who we trusted to start paying. It’s a very difficult process. 

There’s this company called Home Instead which became our ally for a while. More and more, they deal with memory care. There are memory care facilities. There are memory care workers. This stands for dementia and Alzheimer’s. We started getting our caretakers from them and we went through about six of them. The first living woman, Cora, did good for what she was— but me, I just felt like the food she was feeding my grandmother was awful, super fatty, super sugary food. She wasn’t specifically trained with Alzheimer’s so I could tell sometimes she would get frustrated, just like anybody would. She would play a little game as though she was angry with my grandma, and I was like, “You can’t do that.” She ended up moving on.

You needed to have a team. You needed to have the person who was there Monday through Friday, and then you had to have the person who comes to support if your weekday person needs time away. Then you need to have a person on the weekend, to relieve the person during the week. 

In the first year or two, I started writing about my grandma’s Alzheimer’s, and a lot of it had to do with the return to infancy. That was really the perspective that helped me communicate to myself and to people— the true return to being a baby. You cannot leave a baby alone, we cannot leave her alone. A baby cannot go to the bathroom for itself, you got to change that diaper. You need to feed that baby with your hand. This person might look like an older adult but 100% she is a baby. We pick her up like a baby. We love her like a baby. We hold her like a baby. We feed her like a baby. We put her to bed like a baby. That’s just that’s what it is, 100% that story of the little boy that has the mom…

HS: “Love You Forever,” that’s the book.

CLC: Yeah, it’s totally that. 

Then third year, 2013-14, had dramatic changes too. She was able to walk for a long time and feed herself. Then when I would go to visit her, it became about savoring the fact that we could still share a meal together. That’s where I went with it— savoring those little things. It got so quiet around her house. 

My mom started going to these support groups in Oakland, in the Bay Area. They had a good one for her. I never actually went with her but she would tell me all about it afterward. There were a few things that would always come up. One was the money thing, how expensive it is to actually take care of somebody. Say this happens to somebody in your immediate family. Say it happens to your mom or your dad or your grandma or your grandpa, or whatever. A lot of people will say if they’re married, “Oh the spouse is going to take care of them,” or, “The daughter is going to take care of them.” It’s obscene to think that. Even though you’re mother took care of you when you were a baby, it’s so different for us as adults doing our life to then take care of this person because it is a round the clock job. It’s not like you can fit in other things because you can’t get a babysitter. It’s so interesting, the caretaking aspects of it. Luckily my grandma had done a really good job of saving her money and lives a very low overhead lifestyle, so we are able to afford this round the clock care for her. It’s around $300 a day, around $100,000 a year, and they say a third of our humanity will have some form of dementia by the year 2060. That’s crazy. 

Okay, let’s back up now. My grandmother ate food from farmers markets her whole life. My grandmother walked two miles every morning. She would meet her girlfriends to swim in the pool at 5 p.m. for a half hour. She was on the board of her homeowner's association. She was on the board of her emeritus college school for senior citizens in Santa Monica. She took french political science, Italian, opera, and literature classes from the age of 70 to 83. She read every Shakespeare book multiple times. She played solitaire. She went to plays and shows. She covered the bases. When they say, “Exercise your mind, exercise your body, keep the community, and eat good food,” she did it all. I don’t have an iota of, “God, she should have done more of this or that.” There’s a part of me that thinks in my gut— okay she’s 89 now. When you’re on the planet that long, in my vagina sense way, I think a portion of it might have to do with pollution, might have to do with something toxic in the air or even in the food back in the day. Obviously, we don’t know, but if I was ever going to cast my own cards to say how could she have gotten this… It’s a disease. It’s genetic. It’s whatever it is. They don’t know how you get it. They don’t know how to stop it. I think, “Okay, yes. Definitely eat well balanced leafy green diet, walk, exercise your mind, exercise your body.” She’s done all of that. The only thing I could possibly attribute it to is some pollution-toxic-something in the air that we just can’t avoid and we don’t really know what it is and it’s just there. There are toxins all around us all of the time. When you’re on the planet for this long, those things add up, right? 

Or, because we are living in a time where people are living longer than they ever have, maybe it is a very natural thing for the brain to decay. It’s going to start to shut down and go back to the earth. I mean, that’s just the path. Some people get cancer. Some people, I don’t know. Alzheimer’s could also be a very natural way of dying. Starting to slowly shut down. That’s what it is. I cherished sharing a meal together, and now she has to be fed. 

Speed it up to last year. I went to Ibiza for a month and I had a lot of angst about leaving for that long. I felt like, “Oh maybe that’s going to happen. Maybe she’s going to die.” I did some deep spirit work about it and decided to really just let it go. Since then I probably have been the most at peace with it.

HS: At peace with death or with Alzheimer’s?

CLC: With her having the Alzheimer’s. 

I’ve never had a big fear of death so I don’t feel like I had to work with that. I mean death can be very tragic if it happens to a young person if it happens very spontaneously. When somebody dies in an accident or something like that like it can be shocking because of its abruptness. Then there are deaths where somebody has a disease and you’re hospice-ing them and you know it’s coming. You know it’s coming but it’s coming slowly. I always knew my grandma was going to die, sooner than probably my mom, but it’s more of… Back to my mom’s support group— so one thing was the money, that they all talk about because a lot of people don’t have this extra funds, that’s very traumatizing. The other thing they talk about is that it’s way harder for the immediate family than it even is for the person that has the Alzheimer’s because they’re just slipping away. There was a point where it was very frustrating for her, for sure, but that did not last long. Maybe a year at the most and I would say half a year, in our situation. It’s way harder for the cognitive living family because we’re still 100% taking care of ourselves and we can see the imbalance that’s happening. 

I have never seen this amazing support in my mom before. I think my mom has stepped up in ways she didn’t even know that she was capable of. For five years now she has been flying down to LA every two to three weeks to see my grandma for a day or two. My mom calls her every single day and just talks to an ear essentially. She has shown me the capacity of showing up for somebody, that I did not know she was capable. It is really beautiful.

Backing up to before I left for Europe last summer, I had this spiritual session with Kristen Marie. One thing she said to me was, “All the guides and all of the angels are saying that she is completely surrounded by love. She is not alone. She is fully supported and loved and has lived a very full and beautiful life. There are no regrets. It’s all good.” I just remember holding onto that. Now I just see that love every time I see my grandma. She is completely surrounded by love. She has these caretakers that take care of her. She has my mom. She has me. We celebrate her birthday. We send her flowers for every holiday. We’re there for thanksgiving. We’re there for Christmas. She’s not alone. I mean, God, that’s the most beautiful thing we can have at any point in our life and especially at the end of our lives— being surrounded by love, even if you’re a nomad and it’s just one other person just loving you.

HS: How did you handle seeing your grandmother’s progression, and also how did you help comfort your grandmother while she was aware and frustrated?

CLC: To cope I had to see her more often because when I would let too much time pass it was way too traumatic for me. The year I met Chrisray 2012-2013 when we were first dating, I was going down to LA every five weeks or six weeks. That was helpful. When I was there I went into my Virgo mode. I did a lot of organizing, trying to keep things fresh and clean. Getting rid of expired things. Maintaining the home. That was a way I was processing and a way that I was still connecting to her— looking at her books, touching her clothes, folding her sweaters, organizing her secretaries desk, and noticing, “Oh, that’s the way she would write.” I would look at how she used to write. 

When I would feel my emotions coming on, I would just write. I have a very long google doc that I would date and then do stream of consciousness writing. I would write down things like, “She can’t really talk, so this is how she talks now. This is what she’s says and this is how it sounds. This is how she was pacing around today.” Just writing about the Alzheimer’s, and that’s where that infancy thing would just keep coming up over and over again.

To comfort her I just tried to not break down, get super sappy and teary-eyed, in front of her. There were times when I would just be so overwhelmed with emotions that I would have to move my face away and just let the tears come, then bring it back and smile. Sometimes through the smiling I would be tearing because it’s a combination of loving somebody so much and knowing that all I’m doing is just being present, sitting next to her and watching her Judge Judy or watching her stare off into the unknown. There’s a lot of that. There’s a lot of staring into the nothingness for them. 

The team that she has now is above and beyond amazing. I don’t know how they do it. They are gifted. They are special. They know how to deal with her. Not only to not get frustrated but to like raise the quality of life for her. That’s another thing they talked about in the Alzheimer’s support groups (and things that I have read, and podcasts that I have listened to) the minute that you take them out of their home and they go into a memory care facility or an aging home, across the board the decline is like whoosh, very steep decline. We knew that we were going to keep her in her home until the end. Now the doctors say the only reason she is alive is because of the care that she’s being given.

Danielle’s grandmother, her dad’s mom, died of complications of dementia. One of the things that I’ve read and seen happen, is people with dementia get a lot of UTIs. My grandma does. I remember Danielle telling me that her grandma got a UTI that went unnoticed. That bacterial infection was the thing that took her down.

Different ways you can actually die from Alzheimer’s: 

  • Not eating because they forget how to eat. They don’t know how to chew or swallow. 
  • Forgetting to breathe, which is crazy to think about. 
  • A small infection that goes unnoticed and then breaks down their immune system.

Before the Alzheimer’s she was one of my muses. I’ve been heavily photographing her for about ten years. Another interesting dynamic to our relationship is that she modeled when she was young. She was in this kind of luxurious industry and then here’s her granddaughter that’s a photographer who starts to use her as a muse. I feel like the photographs of her are so elegant and so timeless. Then it just kind of stops. 

I did photograph her a couple times with a Holga. I developed that film, and looked at what I wanted to get out of those photos. It was just so interesting. It was just like boom boom boom. There was no need to take more pictures— loss, confusion, loss of identity, frustration. It was all there just in one photoshoot. I still have some Holga’s down there. I still have some film down there and every time I go down I say, “Oh I’m going to photograph my grandmother.” I’ll take pictures with my phone but these past two years I haven’t really shot her with film. I kind of feel like I don’t need to. I think if I hear she has to go to hospice, or I hear that it’s really declining, I’m going to do end of life photos of her. I don’t want to heavily produce work of her current state probably because it’s just too sad for me. I’ve known her to be such a beautiful elegant woman. So many of my photographs display an old beautiful woman. I already have the images I need to document her fragility, the shift, and the change. This is a big change in our relationship. Every time we got together I would photograph her and I don’t do that anymore. 

I also had to process the relationship that she now has with the caretakers. It is very intimate and strong. I don’t know if anger or frustration are the right words, but it really annoyed me. There were times in the past year where in my head, I would think, “Can you fucking leave? so I can have time with my grandma, can you not sit right here?” Of course, I would never say this. These were involuntary thoughts, “I want to be with my grandma. I don’t want you here.” That is the young little girl in my being overprotective and traumatized by the situation. The adult in me is like, “Oh my god, I’m so thankful that you are here. I have so much gratitude for the way you love my grandmother and take care of her.” So that’s kind of a mind-fuck.

I would talk about it with my mom after each visit. 

It becomes all about now, the present moment. Everything is about, “Oh it’s sunny and we’re together. That’s amazing, and that’s enough.” Also, my own philosophy of the slow passing of time it's something that I talk about and use in my work. I feel that when I’m really present time slows and yet time goes by so fast sometimes. It’s sun and moon, light and dark, young and old, yin and yang. It’s just two sides of the same coin all of the time, back and forth, back and forth. 

The whole thing with the Alzheimer’s is nobody has any idea what it is like like unless you have somebody in your life going through it. Seth Rogan’s wife’s mom had it. I don’t know if she’s still alive now. He did this amazing speech in front of a senate hearing on Alzheimer’s research. I just remember hearing it at the time and it just hit the nail on the head about every point. It was like, “Yep, yep, yep, yep, yep. That’s it. That’s it. That’s it.” 

I’ve heard some interesting podcasts of people who’ve had Alzheimer’s. This woman who had Alzheimer’s was in was so early along that she was able to document her transition, which was really interesting to hear about. She was younger, so it was different. I can’t imagine when it happens to people who are younger than you would expect. I think my grandma was like eighty-four when it started onsetting. Diane, who is a friend of the Tika community, her husband has early onset Alzheimer’s. I’m just like, “Oh my god.” That’s so young. My grandma lived a full life. She’s not being robbed of anything. I don’t feel like, “Oh god, she didn’t do all the things she wanted to do.” She saw her grandchildren graduate college. She saw me get married. She definitely had Alzheimer’s then but she was able to show up for the civil ceremony in LA, which was really special. I couldn’t have asked for anything more.

HS: In your experience what’s the difference between preparing for death than in preparing for dementia? As a society, we have such a taboo about talking about death, so it’s very shocking to the system when either an accident or a diagnosis happens. Is it similar with Alzheimer’s? Do you feel like there’s something that society could have more awareness of that would make Alzheimer’s less intense?

CLC: The weight of end of life care a hundred and million percent needs to be talked about more. I just can’t say it enough, everyone needs to have a health directive. There are some great podcasts that I’ve been listening to about this. Health directive, do it. Get it done. It saves millions of dollars. It saves families hundreds of thousands of dollars. Most of health care is used in the last third of your life and even more so in the last 10% of your life. I think it is atrocious the amount of money that we spend at the very very end of a life to try to keep that life around in that form and state. I think that is disgusting, in my personal opinion. I’m watching my grandmother go through this. I can say now, “If this happens, euthanasia. If this happens, resuscitate, don’t resuscitate. If I cannot walk for myself, go to the bathroom for myself, feed myself or talk, this is what I want to happen.” Just go through the typical form that they have maybe for the first time when you’re around 35 and then once every 10 years. Check in with yourself, your family, your immediate loved ones, and your close friends to be like, “Okay I used to think this but now I’ve updated it to this.” I can’t express that enough. Especially for the child-parent relationship— once your parents hit 65, talk to them. Ask them what do they want to be done. Do they want to be cremated? Do they want to be buried? Where do they want to be buried? How? Do they want to be in a coffin? Do they want to be in an urn? Those sorts of conversations, huge. 

I’ve been very clear with my mom that I want to be there when my grandmother passes. If she doesn’t pass in her sleep, if there is an inkling, if hospice is there, she has an NDR but if we were going to pull the plug, I’ve been very clear about wanting to be there.

Preparing for death is a little bit foolish in my perspective because I kind of just feel like preparing for death is preparing for life. It is do or die. You work on your life to be loving, expansive, peaceful, whatever it means to you to be living a fulfilling life, and to me, that is preparing for death. It’s not a different preparation. Yes, there are the logistics. Get your affairs in order. Make it, hopefully, very easy for the next of kin to deal with whatever finances or paperwork or insurance or doling out of money or savings and bonds and stocks. Hopefully, make that very easy for whoever you leave things too. It’s very difficult when there are multiple children involved. I can definitely say that. When there are lots of siblings, I’ve only seen more and more trauma develop because of that. Everything comes up, “Mom didn’t give me that toy when I was at Christmas in 1985 but she gave you that bike.” All that shit destroys families. I’ve seen it happen in my own family and I’ve seen it happen in the families of my friends. It’s very easy if you’re an only child.

I think in preparing for dementia would just be to simplify all the logistical things. Do you live in a one story home? How easy is it to get into that home? What are the locks and the keys and who has those keys? All those simple logistical things. Is the refrigerator working? Do the washer and dryer need to be replaced? Is there a leaky faucet? Simplify all of those things because really what remains, for example in my grandma’s situation right now, is keeping a clean house, making sure the garbage is taken out, making sure there’s food in the fridge, making sure the lights work, the heat works, the air conditioner work. All those really simple things. My grandma doesn’t shop. She’s not a consumer. We consume for her. We get her things we think are nice because it makes it nice for us when we go to visit. We try to keep her home the same, even though it’s all subconscious at this point. Just keeping up with keeping up the house is a big thing if you are somebody that starts to come down with dementia. If you don’t have family or friends or people that check in on you, it can get so scary, so fast. Literally not knowing where to go to the bathroom so you just poop all over the place. The body and the functions and the humanness and the cleanliness— the more sound mind you have the more likely you are to keep a clean home. If you have instability, if you have like issues, then your home starts to show it. It’s scary to think about people who don’t have the support. That to me is one of the saddest things that could happen.

HS: What are the options for someone who doesn’t have money. Do you know?

CLC: Medicare and Medicaid. There is a portion of money that is federally funded that will provide up to a certain amount of home care. It’s not enough, though. Then you get put in one of those homes. You’re just left there. I’ve walked by these homes. I’ve peered in. It’s not good. It’s very sad and it’s very lonely. It just goes back to like the simple things. 

When I say you need a partner, I don’t mean like a lover-partner. You just need somebody that cares about you. Sometimes this person could be somebody you didn’t know at all in your life but all of a sudden has an affinity toward taking an interest in you, checking in on you, and being around for you. I mean really just that. The biggest blessing is if you have someone who is interested in your well-being— who will bring you food, make sure your garbage got taken out, bring you a blanket if you’re cold, turn on the AC if it’s hot. It all gets so simple. Nothing else matters. 

Every time I go down there and I’m like, “Ugh conventional chicken and fuckin' Lucerne milk.” I’m scoffing at the refrigerator and I’m wondering, “Why can’t we get her organic stuff?” My mom is like, “I hate to say it honey, but that’s low on the totem pole right now.” It’s so true, but to me, this young 30 something, organic is where I go because that’s what I’m working on in my life. Or the recycling, “You guys aren’t recycling. Why can’t you recycle?! Why are you putting it all in the same basket? Stop buying bottled water get a water filter.” This is because I’m living in the present where I’m trying to make the world a better place or our lives better. I don’t want to say that at the end of the day it doesn’t matter, but when you’re dealing with somebody who’s days are numbered, those things kind of don’t matter. It also reminds me of how much really isn’t being done. The caretakers are doing excellent at taking care of my grandmother but if they’re not recycling, can you imagine what an entire memory care facility is doing? It’s insane.

HS: How do you think this experience has changed you?

CLC: Well, I feel very blessed to have insight on this. It feels like I’ve peered into something, peeled up the carpet, looked behind the curtain. It’s a different dimension in a way. People talk about Alzheimer’s like, “She forgot her keys. She’s getting early onset.” People say silly things in relation to Alzheimer's and I’m just like, “No, no, no, no, no.” 

A lot of it has to do with how close I am to my grandmother. If it’s somebody in your life that you’re super close too, a super close loved one, it makes you love them so much more. It makes you be thankful for all the time and wonderful memories you did have. I feel like I did a pretty good job of asking her to tell me stories about the old country, her life when she was growing up, but sometimes I wish she was all with it right now so I could ask even more questions, hear even more stories. When I was leaving New York I met this girl who worked next door to me her grandma had Alzheimer’s. She said something about videoing her grandmother. I wish I had done more video with my grandma before the Alzheimer’s. That’s something that I kind of put out there to people now. My mom doesn’t really like pictures taken of her, nor does she really like videos of her, but I can definitely sense that I will be videoing her more in the next 10 years. Video is a beautiful way of remembering somebody. 

This is the other thing that happens. The longer the Alzheimer’s is with you, is in your family, you’re around it, the more those current memories start to become stronger than the older memories of when she was bopping around the house, cooking Thanksgiving dinner, shopping, getting in and out of the car, and driving. Another thing I do when I go down there is I look at the old pictures to remember, to get in touch with her vitality and how voluptuous she was, her skin, her hair. I’m trying to keep that essence of her in the orbit right next to her current state of being. I’m so tuned into like when people start to die when people start to go. The color of their skin gets drab. Their hair turns all white. Their life is draining out and you can see it. It’s like looking at a tree, knowing that you’re staring at the leaves and you can’t see it growing right in front of your face but you know that it’s growing right in front of your face. That’s how I see my grandma. I’m looking at her and I’m not looking at the time-lapse but I know the time-lapse is happening.

HS: How has your relationship with her death changed? How do you feel about her physically dying?

CLC: Great. I feel like it will be a blessing. I’m prepared and ready for it. I just want to be there and witness and hold space. That’s it. That’s all there is to do. Again, it’s very simple. It’s not complicated. It’s not gripping. It’s different with an old person. I can’t imagine if it was my baby or my three or four-year-old kid who got a terminal illness. That would be a completely different story, and I would again have to build another relationship with death in order to learn what that transition would teach me. With my grandmother, it’s the end of her life. If anything, I’m mourning my own needs and wants. I’m sad that she can’t talk to me and tell me her stories. I’m sad that she can’t take me shopping. I’m sad that we can’t go out. She can’t get in the car and drive me to dinner. I’m sad that I can’t show her my home in San Francisco. It’s all "me" stuff. It’s all ego. It’s all personal gain, personal desires. Not that any of that is bad. It’s all good love, but the amount of gratitude and love and time that we’ve had far outweigh those things I wish I could still do with her.

HS: If there’s one thing, one or two things, that you wish you could share with people that you’ve got from this experience. What would those things be?

CLC: The photographer in me immediately says document. Document your loved ones. Take pictures, mundane pictures, festive pictures, pictures when you visit them. Even if it’s just a small little selfie or snap. But that’s me.

Meet them where they’re at now and find out what their wishes are. Even if the first or second or third time, they say they don’t want to talk about it, they don’t want to think about it, just keep asking. It can just save so much money. Not that it’s about saving money but it’s also not about just throwing money at the situation to put a band-aid over it. Find out what their wishes are and do your best to uphold them. My mom did get the word that my grandma wanted to stay in her home, so we’re making that happen for her. She gets to stay in her home.

Simplify all of it— from the clothes, to what’s in the bathroom, to what's in the kitchen, to how the bills are paid, how the money comes in. Make it simple so that if Alzheimer’s does happen, whoever is next of kin won’t have the stress of figuring it out. It’s going to be stressful enough to deal with the transition of somebody getting dementia and Alzheimer’s. 

There’s a part of us living-working-humans, when we’re very young and vital and active (and that’s for most of our lives), that needs to do. I cannot show up to my grandma’s house and not do anything and my mom’s the same way. We’re doers. You want to make sure everything works. You want to sweep. You want to clean. You want to get her blanket. She’s just fuckin’ sitting in a chair not doing anything. There have definitely been spiritual moments where I’m like, “Wow, here is the art of doing nothing.” [laughs] Who knows what’s going on in her head. Nothing really. I don’t know. 

HS: Is there anything else that you want to say?

CLC: The phases are crazy from going through like the denial of, “Okay she’s going to beat this,” to the severity of, “Oh my god, it’s all or nothing.” Going from thinking she is immediately not going to be able to talk, not going to be able to walk, not going to be able to eat— to then the personal suffering. When you deal with Alzheimer’s, it becomes about the people left behind. It’s about the people that are still cognitive and aware and present, communicating, experiencing life, and talking about ideas. Not being able to do that with her is what’s hard. That’s where your personal journey takes over. That’s what happened for me. It’s a personal journey of letting go, honoring what was, what is, what will be. There’s nothing to clench onto or grip toward. There’s is definitely a sense of helplessness but it’s a different helplessness. It’s like you can’t do anything about the situation but that’s okay you don’t have to do anything about the situation. Are you okay with not doing anything about the situation? If you’re not, then that’s what you have to work on.

There is also the very natural, genuine sadness of missing her being interested in my life— asking me questions about Chrisray, asking me questions about our house. That’s the whole thing, though, I’m missing her and she’s not even dead. That is a very real thing that I talk about with my mom. I miss her. I’ve already missed her in the past couple of years as if she’s gone. Now when I see her it’s a little icing on the cake, a little treat. Now it’s like I can still hug her and giver her a kiss. How sweet. I awe. That feels like an added little gift from the universe because we can’t communicate about what’s happening in life. She’s not the woman, the grandma, the caretaker, the guardian that she used to be for me.

The end is near for her, and it is not for me. I just sit with that and I contemplate what that means because that is definitely a concept that spans a lot of other scenarios. Everybody is somewhere different on their little path. 

I can’t say that this experience has put me in a state where I’m going to live in the present moment, that it’s taught me all of that. I had already had that going on in my life, from the first experience of death I had. 

I remember, when she still had a little bit of her wits, going on a drive with her and she was in the passenger seat. I got really emotional. My voice was cracking. I grabbed her hand and I just said, “Grandma I want to ask you to make sure that you will be my guardian angel, that you’ll look out for me and that you’ll always be there. I’m just saying it even though I know you’re going to say, ‘Of course I will be.’ I’m saying it to the ethers. I’m saying it to the universe. I want you to be always with me.” She said, “Of course, of course, of course.” That went hand in hand with an experience I had soon after. 

Not too long after, I went to a meditation retreat and this one guy sang this song at the end, and it was beautiful, beautiful song. The song goes, “May you always remember me loving you.” When the song was happening I was just bawling because it was all about my grandmother and it was her singing it to me— her spirit saying, “May you always remember me loving you.” Without a doubt, the tenderest bit in my heart, inside my being, inside my spirit and soul, knows that when you have love like that in your life, nothing compares. Nothing else matters. How lucky am I to have had this person in my life, that happened to be my maternal grandmother, that happened to teach me and practice unconditional love? Without a doubt, I know what that means. I would never take that for granted. That gave me so much confidence in myself as a being. If you have somebody in your life that just loves you no matter what, no matter if you die your hair crazy colors, who will love you if you have dreadlocks, or if you have tattoos, or if you marry someone outside of your religion, or out of your race, or any of those things, you are so fortunate. That’s what she was for me. A lot of people have that with their mom, or with their dad, or with their siblings, and then a lot of people don’t have that from anybody. That is very sad. That can make life very, very difficult.

HS: Wow, there was a lot of good stuff in our conversation. Not related to Alzheimer’s, I have a question I ask to everyone that I interview: What do you want your funeral to be like?

CLC: There’s a picture that I pulled out of a national geographic it is a really beautiful picture of this Tibetan girl. She’s laying down and she has these a line of like charcoal patties on her body. They all have incense on them and they’re all burning. It’s unclear if she’s dead or if she’s alive and this is a ritual. I have had the vision in dreams, and journeys, and prayers, where I imagine when it is my time I will take a breath in and my whole body will be filled like a balloon. Then when the life is gone, the air poofs. My whole body deflates and a little bit of smoke comes up. I know that can’t physically happen [laughs]. 

As technology and science move forward, I’m very open to exploring euthanasia. I resonate with that peaceful injection from my loved ones, with my loved ones around— my children, my grandchildren, my partner. If it is that time, as I have specifically written out, I will have a nice healthy dose of morphine and go into the next world. 

I want to be cremated. I haven’t figured out where I want my ashes. I would like my immediate family to have some, and then probably, spread the rest out in the waters of Ibiza. I also like the idea of keeping a good urn of ashes so that when if there’s somebody in the family that feels the need to have a ceremony that they could take those ashes at any time. It doesn’t need to be at the anniversary of my death. It doesn’t need to be on my birthday. I want them to have something they can commune with that means something to them, because honestly after I go, it’s the people that I’m leaving behind, that still around that still have memories of me, that I would want to have something sacramental. 

I don’t want to be buried in a box in the ground. I also don’t know if cremation is the best thing we should be doing to our environment so I’m open to changes that happen in the next 10, 15, 20 years— plant a tree in my name, move me into the soil. I want whatever is most environmentally friendly and causes the least amount of resistance for my family because they are the ones that are left behind andI want them to feel good about how my body is taken care of. 

I don’t know if there will be more than ten people at my grandmother’s funeral. When you get old, there are not that many people left around. It’s not like when you die young and there are tons of people. It’s such a different type of death. I kind of want to say, “Funerals are for the young.” Then there are all the people that die that don’t have anybody. That’s something I’ve thought about when somebody died and nobody goes to their funeral. I’m sure there’s a group where you could show up to strangers funerals. I like that idea. I’ve thought about that a couple times. Maybe I’ll start doing that occasionally. I’ll go to some strangers funeral that doesn’t have anybody to just be like, “You were loved. You were remembered. You’re not alone.” 

There’s this moment that I’ve heard of and read about, where there’s struggle, or not a struggle but a resistance, knowing that death is about to happen. You take their hand and you tell them, “It’s okay. Go ahead,” and then they can go. I’ve heard of this happening a few times, with Danielle’s grandma, my great grandma, and my grandpa. I see that with my grandma, “You’re okay. You can go.” I can’t imagine, even if you’re like out of your mind or diseased or whatever, that struggle to just release into it. I will be there for my grandma to tell her that she can go and that it’s okay.


Colleen Longo Collins is a dear friend, an amazing fine art photographer, and a professional organizer. To see photographs of her grandmother, click HERE. Please follow her photography on Instagram @tenaciousnostalgia.

Walking to the Edge of Life— An Interview with End-of-Life Planner, Alua Arthur

Alua Arthur of Going with Grace is an end of life planner— a job she created from the collision of death midwifery and frustration at not having anyone to walk her through the logistics of death. Through her work she has noticed what helps people approach their end of life with a sense of peace, recognized the importance of leaving “shoulds” behind, and has learned to see everyday losses as practice for death. Most importantly, she’s seen how much families are helped when loved ones have advanced healthcare directives. Without further ado, an edited interview with Alua Arthur:

Forget-me-nots from goingwithgrace.com

Forget-me-nots from goingwithgrace.com

HS: When I first reached out to you I found a story on your site where you had traveled somewhere and that experience got you into death, but I couldn’t find it when I looked on your website again.

AA: Yeah, I took it down.

HS: I’m just curious, what’s the story. How did you become interested in death?

AA: I had been practicing law for 10 years and found myself really unhappy and burnt out. I was working at legal aid so I wasn’t doing high priced fancy law. I was working with the people, serving down in the trenches. I burnt out. Then there were budget cuts at work and then I got moved into this place that I call affectionately, “the dungeon.” This was not a very happy place. It was miserable, no light, concrete upon concrete. I would drive into a concrete parking structure in the morning, walk into like a concrete corridor, and into a concrete office with no windows. The mild grade depression I was feeling just ballooned and became this big heavy cloud of darkness, so I took a medical leave of absence. 

I went to a friend’s house in Colorado. While I was there I started meditating daily again. I had regularly meditated in times prior but really I committed to it this time because I didn’t know what else to do to get myself back to the joyful, colorful, human that I had known. One morning I went to the library and a book literally jumped off of the shelf and landed at my feet. It was Anita Moorjani’s, “Dying to Be Me.” It was about a woman who had a near-death experience after a four-year dance with cancer. What she learned was really familiar and relatable and yet her experience was filled with things I knew nothing about. 

I finished the book and was getting ready to return it when Elian Gonzalez popped into my mind. I don’t know if you know or remember him, but he was this kid in the ’90s who had come over on a raft from Cuba with his mother. In the last part of the trip she died, but he made it to land safely. He was six. There was an image stuck in my head of when the U.S. found him. They had been trying to send him back to Cuba, but his family members had been hiding him in Miami. It was a very stark image. His uncle holding him in the closet and sheer terror on Elian’s face. I started thinking about that kid and whatever happened to him after they sent him back to Cuba. I wonder who he lived with. Cuba was on my mind. 

When I went back to the library that afternoon to return the book and I found a Greenpeace worker. He went to his bag to get me a pamphlet and on his bag it said, “Cuba Te Espera,” which means, “Cuba Awaits.” It turns out that that was the tourism company for Cuba back in the day. I don’t really believe in coincidence, so I decided I was definitely going to Cuba. 

I bought a ticket, went, and spent a couple weeks traveling by myself. I got that spark of joy again. I was so excited that it was coming back and not gone forever after the depression. Later, I was in a town called Trinidad and I met a woman on a run one morning. She decided she wanted me to go out with her, so she could find me a boyfriend. She put my hair up in this scrunchy to make me cute for the guy that was going to be my Cuban boyfriend, which he wasn’t at all. He was so young and he didn’t speak a word of English. It was nothing romantic, but we had a lot of fun. We were in a limestone cave in the middle of a mountain, which was super cool. It was also kind of strange because there were all of these Europeans there who thought I was a Cuban prostitute. That’s a whole other story. 

Anyway, in the morning I woke up really late, hungover, and went to go return the scrunchy to the women. In Cuba, there is a high value on things because they don’t get very many new things in the country, so I went to go take the scrunchy to her. Along the way a car almost hit me. I put my hands on the car and I was like, “Oh my gosh, get it together. Don’t die on this street here.” I gave her the scrunchy made it back to by the bus stop in time.

At the bus stop I met a young woman who offered to save my place in line while I got tickets because I was late. She was going to stall the bus so I could get on it, which she did very well, in a silly way. She was being completely ridiculous and I was watching her thinking, “She’s really willing to make a fool out of herself.” We started laughing hysterically about how of control and way over the top she was. It was hilarious and it was super cute. Needless to say, we were instant friends. We got the last two seats on the bus and started talking over the woman who was in between us. Before long we started getting deep. She told me that she had uterine cancer and was on a trip to see the top places she wanted to see before she died, Cuba was amongst them. She was really scared to die. The cancer diagnosis had brought her mortality into the full view and she was terrified of death.

Through our conversation, it became clear to me that her desire to travel came more from the fear of death rather than embracing life. You know very different vibrations. One is like, “Oh no, I’m going to die.” The other is like, “Well shoot, I’m alive now. What am I going to do with it?” 

We talked a lot about death. I lead her through meditations on death. I don’t know where I was pulling this stuff out of, but we had a really beautiful time on the bus. We talked about her passions, her life, what it was she felt she hadn’t yet done, what she wanted to do with her life, and so on, and so forth. We spent seven hours on the bus together. When we got to her stop and she was supposed to get off she decided to stay with me, which was really beautiful. We laughed and coveted our neighbor’s ice cream and watched music videos from the ’80s on the bus. It was a really magical time. 

On that bus ride, I got super clear that I was going to work with people who were dying. I was really sad that she had never spoken to anyone about her fear of death before. Here I was a perfect stranger and she’d opened up to me. It seemed to be a really good and positive experience. I was on leave of absence from my legal career, but I didn’t know that I wasn’t going back. I felt strongly that I was going to work with people that were dying. 

We went to my place in Santiago de Cuba and had a really beautiful evening. We were in bed when she said to me, “Remember when you were in Trinidad?” — the city that we had left fourteen hours prior. 

I said, “Yes” 
She said, “You were running through the streets, right?” 
I was like, “Yeah,” but I was thinking, “Why does she know that?” 
She said, “A car almost hit you.” 
I said, “Yeah.” 

She was in that car that almost hit me in the street on Cuba — so trippy. It was literally a collision into what my life’s work would be. 

This set me on a course, but also set her on a course. The reason we started talking at the bus stop was because she had a tattoo of a quill pen on her arm. When I asked her about writing, she said that she just liked it. However, when we were talking about her life, what she regretted was about writing. That was really her passion. I wanted to know, “Why aren’t you writing?” She turned her six-month trip into a book which became a bestseller in Germany. She’s now a published and decorated author. Our meeting really set us both on brand new courses in our lives. I am eternally grateful for her. She’s a soul sister like none other. We’re still in touch. She’s totally healthy, cancer’s in remission, writing, living, loving. It’s beautiful.

That’s the story of how I fell into death work. It’s been a long wild road. 

I had to figure out what I was going to do with people who are dying? I applied to psychology programs on death and spirituality. I got into a couple of them, but I wasn’t quite sure. I met this great German guy, fell in love with him, and spent a couple of years traveling around the planet with him. I still wasn’t sure that I wanted to do the Ph.D. route. Somewhere along the line I found death midwifery and kept studying that while being abroad. I would fly back and do classes. Death midwifery seemed like a really good fit, but after spending some time with it, it didn’t quite touch on all of my desires. 

The most poignant of these desires was brought to light when my brother-in-law got ill in May 2013. By December he was dead. When he got his terminal diagnosis, I packed up and went to New York where he and my sister and my four-year-old niece were. I essentially midwifed him without knowing that was what I was doing. There was a lot of frustration during that time. There were so many things happening with his body, and there were medical people to explain those things. There were social workers that would check in. There was a hospital chaplain that would come, pray, and be with us. But there was nobody that would answer the questions. Nobody who’s job felt like it was to be with us through this process. Frankly, I was angry. I thought it was really cruel. I felt like it was big missed step in the system. After he died I spent a couple days with my sister trying to figure out things like how to close his accounts. We’d already planned the funeral out, but how do we wrap up all of the affairs of his life. What are the passwords for his accounts? How do we cancel his driver’s license, cancel social security number, figure out what the death benefits are? Where are the people? Where is the guide to help me do this? Where are the people? So I became the people.

HS: Will you explain more about what death midwifery is and kind of contrast it to hospice framework?

AA: Hospice is a theory of care. It’s based on comfort. It is still medical. It is palliative care so there is medication and making sure that the patient is comfortable. Death midwifery is more of a companion, someone who sits and answers questions, who does all the non-medical care and support of the dying person. Death midwives also help families bathe the bodies, create ritual around the death, can help keep the body at home for vigil-ing. If the family would like, death midwives can also do a home funeral before the body goes off to a crematory or to be buried. 

HS: That’s really interesting because most of the exploration I’ve done, people in the death industry are either on the life side of death or on the death side of death. There are all of these nurses and doctors and spiritual counselors and chaplains and social workers and they work with people until the death. Then there are the morticians, the people who run the cremation machines, people helping with the graves. I guess the bereavement counselor would work with the family on both sides, but there seem to be very few people who work leading up to and after death. It’s interesting that a death midwife will help in both ways. 

AA: Yeah and that’s what I feel like is really lacking in the system, somebody bridging the gap. 

HS: Definitely seems like there’s this middle ground where people are asking questions like, “Can I keep them at home?” and no one knows. 

AA: Nobody knows, death midwives know.

HS: What reactions do you get when you tell people you’re an end of life planner? Any funny ones?

AA: Funny, funniest to me is when I say, “I’m a death midwife” and they’re like, “Oh so you know sign language?,” and I’m like, “Well I learned it in college…” Now I understand the connection but the very first time it happened I went on as though I was a deaf — A-F — midwife. They don’t hear death, they hear deaf, and it’s happened quite a few times. When somebody asks me how I find the deaf people, or if I’m deaf, or if I have a deaf sister, or if I know sign language, then I’m like “no-no-no deaTH, like dying.” That’s kind of funny.

There’s one of three reactions I usually get at a party for instance. The first is people say, “Oh god, that’s so interesting,” and then they’ll leave. They’ll go get another glass of wine or go to the bathroom or go find somebody or something. That’s always fun. The next reaction is that people want to talk about grieving somebody has died and they finally feel comfortable to talk about it with a stranger. That’s actually really awesome. The third is that people are like, “I’ve never heard of that, what does that mean?,” and then before long I’m asking them about whether they want to be buried or cremated and they’re like, “Holy shit! How did we get here at a party?”

HS: “I was just eating hors d’oeuvres, what’s going on now.”

AA: What’s going on, why are we talking about my mortality?

HS: Right, gotta spread the word. There’s this question on the Going With Grace website, “What must I do to be at peace with myself so that I may live presently and die peacefully?” Have you experienced any common answers to this question?

AA: Yeah girl, it’s such a juicy one. The commonalities are typically about wanting to leave this earth with some peace of mind. That answer is the biggest commonality but it varies so much by individual. If I were to ask you what dying peacefully and dying with peace of mind meant for you, what would you say?

HS: For me, it would really be about being authentic and also making sure to live my values — treating people with care and respect, and showing the people who I love how much I care about them, including myself. In a nutshell.

AA: In a nutshell. Sum up your entire life in 10 words or less, GO. One thing that comes up a lot is people wanting to make sure that all of their relationships are healed, that’s really important. Another one is people want to make sure that their affairs are in order, meaning that they’re not going to leave a messy estate for their loved ones. By estate I don’t just mean the will and the finances, I’m also talking about practical things like what to do with the body, their stuff, or how to find where their account passwords are.

Healing relationships, cleaning up the estate, living with authenticity, making choices that are in line with who you are (like what you said) — I think those are the top three. Another is leaving nothing unfinished, truly leaving nothing unfinished. Control and leaving estates nice, clean, and healthy are the largest ones for the older people that I talk to and the people that have experienced death of grandparents. Mostly people in their mid-40s that are starting to think about when their parents are going to die and all of the stuff they’re going to have to deal with. I find that a lot of younger people are more interested in living authentically. People of all ages are concerned with healing relationships.

HS: What’s your answer?

AA: Ay dios mios, did you really just ask me that?

HS: Yep [laughs]

AA: What must I do to be at peace with myself so that I may live presently and die peacefully? For me right now, it’s most important that I do everything within my power to bring awareness of death to this culture — to live my purpose fully. That’s my short answer.

HS: It’s a good one, purpose is a good one.

AA: Yeah, purpose is it for me right now. There’s a burning desire, there’s a call in my life and this is it

HS: Has your end of life planning work, have you had to use it personally, has it helped you through deaths of people that you know?

AA: Not since my brother-in-law, which was at the inception of my end of life planning. Nobody close to me has died since then. The beautiful thing is that people call me for advice on what to do within death situations all the time now which I love. A friend of mine is dating a guy who’s mother recently died and she wants to know how she can be with him during this time. I’m not a grief counselor but I’ve been around a decent amount of death — there are some things that help and other things that don’t. We talk a lot about what to do in different scenarios. For example, she offered to close down his mother’s eBay account but she doesn’t have the death certificate so eBay’s giving her a hard time about it. Well, I got some tricks up my sleeves. I like being able to help, I’m a helper.

HS: Have you ever sat with someone when they died?

AA: Yes. My brother-in-law being the first and I’ll tell you about that. He had been sick and when he got a terminal diagnosis they gave him about two weeks. He lived about six after that. Things that went back and forth and they thought maybe they had done something wrong — maybe there was a little bit more time, maybe it wasn’t as bad as they thought. To me, it was pretty clear, though, that he was dying. I don’t know why I knew, but I knew months prior that he was going to die.

He had gone to the hospital because he had decreasing function and his body was starting to shut down, but there was still so much hope. There was also a lot of regret, a lot of sadness, and a lot of fear. My mother, my sister, his parents and myself were the core team around him at that time because it does take a village also. It really does. We were all at the hospital, spending nights there, and waking up there. He didn’t want to die in a hospital but nobody had said, “Hey he’s dying.” Everybody was telling us to jus try this thing and try this and this. I was like why in the hell is nobody just saying the truth. He was dying and he was getting super close but nobody said anything. I still actually carry some anger for the doctor in that situation. Although I understand that the doctor’s job is to heal and for them to say you’re dying means a failure on their part somehow — even though it doesn’t because that’s what happens with bodies. Nobody said that he was dying and I got frustrated because he died in a hospital.

He fell asleep one Sunday night and I was leaving to go take my niece home, she was four at the time. He was having a hard time speaking but he took the oxygen off and he said a bunch of thank you’s and he said he was tired. I responded, “Okay well then rest, no big thing.” I didn’t realize that those would be the last words that were spoken to him. I took my niece home and I came back to spend the night. He was asleep but it was a different quality of sleep. I don’t know how to describe it. He stayed in that state for about a day and a half. Very early morning about 2 a.m. his mother woke us up, we had only been asleep for an hour, and his breathing had changed dramatically. It was very very clear that he was dying, like actually, you know.

We stood around him and I massaged his feet and gave him as much love as I could to carry him on this journey that he was so clearly already on. I kept reminding myself that it was okay, that his time had come. By reminding myself, I guess I was also sending out visions that it was okay for him to let go finally. He had been in a lot of pain and he was very very ill and it was time. There were moments of waiting, hoping that he’d take another breath, but there was also hoping that he didn’t. When he finally he didn’t it was like, “Oh… fuck. That’s it. He will actually never take another breath.” It was very overwhelming. It was also very beautiful. The greatest gift that anyone has ever offered me is allowing me to be present for their dying.

HS: Why do you say that?

AA: Because it’s such a delicate space. It’s such a vulnerable place. It’s such an intimate space. It’s so profound to witness life leave, to see what the end actually looks like, or what the end of this life, as we know it, looks like. Have you ever seen a baby being born? When a baby is being born you feel like, “Oh my god, life has begun.” When somebody dies it’s like, “Oh my god, life has ended.” No more words to be spoken. They will never create anything else. He’s not making anything. He’s not talking to anybody. He’s not putting his hands on anything again. We’ll have no memories of him from this point forwards. This is it. There is a period on this. Similarly when life begins, before this first breath was taken there was nothing, then there’s a brand new life. When life ends it’s like closed book, but can’t open it again.

HS: A birth is intense so I imagine witnessing a death would also be emotionally trippy. It’s like witnessing the edge of the unknown.

AA: I’ve likened it to walking a human as far as you can go with them before you have to turn around. We take them to a certain spot and then at some point we can’t go any further.

I dreamt about my brother-in-law. It was a vibrant colorful dream. There was a parade going by. There was confetti in the air — moving, floating in the air, not falling. It was like there was no gravity for the confetti. Everything was super sparkly. We came out of the parade and my brother-in-law was like, “What are you doing here?”

I was like, “I don’t know.” I felt like I was not supposed to be there — that it wasn’t for me.
He said, “Well that’s okay you’re exactly where you’re supposed to be.”
I was like, “Okay thanks!”
He said, “Stay for as long as you want, but you can’t stay here forever. You have to go back.”
I was resigned, “I’ll go back.”

He gave me a big ol’ hug and got back on the float he was a part of. He was playing this random trumpet. There was like tinfoil confetti, the type that’s on sparkly paper. That’s what the air was. It was just everywhere. Everybody was bright eyed, sparkly, happy, joyful, ecstatic almost.

When I woke up and I was like, “Oh, that’s so weird.” I talked to my mom about it and she helped me unpack it. I feel like it was more about this work where I walk people as far as I feel like I can go. I can push it, but then I have to come back. I can’t go with them to that sparkly parade place until I go there myself.

HS: But you got a glimpse of it and it sounds amazing. Sparkly parade place! What advice do you have for being with people who are dying?

AA: Remember that whatever the person is experiencing is totally okay and correct. We often have a belief about how things should go, but there’s no place where people do things more differently than in dying. As humans we don’t do anything the same anyways, but when it comes to death and dying everybody approaches it differently. How I feel about how somebody else should feel about their death is irrelevant. This goes back to authenticity. Give them space to experience whatever they’re experiencing without our judgments, feelings, and concerns. If they want more pain medication, more pain medication. If they want less, less. No matter what you think. If you think that they should be accepting and understanding, keep that out of the business. If you think that they should still be fighting… Anything that has a should in it, has no place with the dying. It helps a lot when we do our best to keep our own thoughts about death out of the arena.

Feelings can be challenging because there is some sadness that comes along with death and dying. There is a sense of loss, fear, and discomfort that calls our mortality into question. It’s a rich, rich time for feeling as long as we’re not projecting onto other people, but that’s a challenging exercise.

HS: Yeah, it’s challenging even if you are aware of not projecting the should’s.

AA: Very much so. I come up against it all the time. Before entering a house of somebody that’s dying I check my should’s at the door, like a blank slate. I’m just here to be of support. That means whatever they need is what I provide, not what I think they need.

HS: Sometimes I feel like working around death exacerbates all of these lessons that are really useful to know during life. For example, I think of this when I’m doing one of my part time jobs and all of a sudden a priority changes. I had all of these expectations about what I was going to do, but then it changes. You have to let go of how you think things should go and accept the new situation. It’s like what you were saying, there’s no room for “shoulds.” There are so many lessons to be learned.

AA: Absolutely, I think that our richest lessons come from people who are dying or are in space because while we think we’re learning how to live we’re actually learning how to die. We’re learning how to approach our dying while living.

HS: What do you mean by that, will you expand a little more?

AA: In the example that you just gave, you had something that was not going the way you thought it would go — a priority that you had already decided upon was changed. If we can approach situations like that with surrender, acceptance, and an ease, rather than a fighting and a rallying against it, then this situation becomes practice for the loss we experience around death.

When we receive a diagnosis of some sort or there’s an accident, circumstances change. All the future that I had thought I was going to have, all these things I thought I was going to do are suddenly no more. I have options. I can rally against it. I can fight. I can be angry. I can wish it were different. Or I can say, “This is what it is.” I can work with it as it is rather than trying to rally against it. How do I behave when I lose my keys? How do I behave when I’m stuck in traffic? When things aren’t going my way? When I break up with somebody? All those are losses over and over and over again and death is the “ultimate loss.” Again I’m using air quotes because I don’t quite think of death as loss. Instead, I think of death like a divorce from all of the future, all of the things that we thought were going to happen, that we thought we were going to have.

HS: I love that phrasing, “A divorce from what we thought we were going to have.”

AA: …and from the future, what we thought, what we expected, what we felt we somehow were entitled to. We often have this entitlement to life. We wake up expecting to live. It’s a given somehow. I didn’t wake up this morning like, “Holy shit I’m still alive!” No, I was like, “Okay I’m up, first meditate, pee, blah blah, da da dadada.” I’ve already decided that today is going to be mine when in reality I don’t know that.

HS: So funny! I want to start waking up and be like, “Holy shit I’m alive!” That would be great!

AA: Right? Can you imagine the different sort of energy and excitement you would have if you woke up every day like, “WOOOW, I’m alive! I’m still here!”

HS: That would be awesome, I need to work on this.

AA: Let’s try tomorrow.

HS: Yes definitely. So what age group are you working with most of the time?

AA: They’re all over the place, honestly. Everybody should be planning right now. Do you have a health care directive?

HS: I don’t. I need to have one. I talk about it regularly, I just have to do it. I think part of it is that I need to figure out what I want. Where are my lines in my health care directives? When do I want resuscitation to stop? When do I want to keep going? I don’t yet.

AA: Part of my job is to help people figure that out. I ask tough questions but they help people consider options. For example, if you lost any particular function would life no longer feel like it was worth living? What are those functions? For some people, it’s sight. For some people, it’s being able to care for their own bodily functions. At what point does loss of function make life not worth living anymore? How you want to be cared for and what treatments to you want to be given at the end of your life? When you are physically in pain, how do you prefer to relieve the pain? Do you use medication do you prefer holistic methods? What kind of ambiance do you like at home? Do you prefer the quiet? Do you like noise? Do you want the tv always on? Do you like music? What kind of music? All of these things will inform how to treat you when you’re dying.

HS: All these little preferences add up.

AA: All the little things that you learn about yourself as a unique human play into how you die — how you die well and how you die in a way that honors your life.

HS: That makes a lot of sense. I’ve got to get on my paperwork. What do you think are the main barriers that prevent people from doing their healthcare directives or any of the other living will or anything else?

AA: Either they don’t think they’re going to die, they think they have a lot of time before they die, or they don’t want to think about it at all.

HS: It’s also weird figuring out where and how to document your end-of-life decisions. I know about The Conversation Project and I think that walks you through some of this stuff but I’m not 100% sure. Is this site the official thing? It’s just a whole other world that I haven’t walked through yet.

AA: This is the role of an end of life planner. It can be super overwhelming for people. They hear these things and think, “What is this? What does it mean? What do you mean by this?” People fill out those forms without understanding what they’re choosing and not choosing, which ends up becoming even more of an issue at the end of life. I think it’s really important to talk to somebody, ask questions, and have somebody else ask you questions so that you can get clear on what actually want and need.

When I sit with people I start to pick up on things they say they care about. Themes emerge and those themes are the things that make up their values. They probably can’t see them on their own or haven’t identified them objectively before. I help people get clear on their values and then we put what they want in a document that becomes legally binding when signed and witnessed by two people — at least in the state of California. In other states, you might need a witness or to get it notarized. It varies depending on the state.

I’ve written advanced healthcare directives that have the healthcare stuff in it but also the death-care stuff in it. In the healthcare portion, you decide on life support and write down how you want to be treated. The death-care portion is where you write down what to do with your possessions, if you have will and where it is, and who your lawyer is. If you don’t have a will, this is the place you write down which things you care about. What should we do with the rest of your stuff? Should we sell it? Should we give it away? Should we give it to dress for success? Should we give it to the archdiocese? What are all your of accounts? What are your passwords? Do you want a legacy setting on your facebook page? should we delete your Instagram account? You probably want to keep yours up — would you want to keep your Instagram account open?

HS: I would want to keep my Instagram account open, my Facebook account can… I don’t care about Facebook.

AA: Okay so delete it or don’t delete it?

HS: Make sure to get all of my photos off of it and then delete it. It’s such a funny thing, I really could care less. As long as someone has the photos I say delete it. Unless someone has some funny project to do with my Facebook account and then they can go for it.*

AA: That’s great to know. There’s also an “in memoriam” setting where you can create a memory page. That way it’s not sending out birthday reminders but people can still post to your wall. Nobody can post on your behalf, but people can gather digitally on facebook to look at photos of you or talk about your life, but it’s not an active page. I ask because the little decisions that we don’t make add up. My brother-in-law is up on facebook in perpetuity and I get reminders of his birthday every year. What are we supposed to do with his profile? My sister is not sure. She feels uncomfortable closing it. His mom says to leave it open. It’s just one example of the very many things about which we say, “Oh it doesn’t matter I’ll be gone anyways.” Well somebody’s going to have to deal with it at some point. There’s three million dead people on facebook, or something crazy.**

HS: Whoa! Facebook zombies, our next Netflix original. It’s crazy, though. I think about death a lot but I don’t think I’ve ever thought about my own social media after I’ve died. I’ve thought about other peoples’. I’ve read articles on funny, different things people have done with their accounts after they have died. We’re nearing the end of our interview, do you have time for one last question?

HS: What do you want your funeral to be like?

AA: Oh girl! It’s going to be a lot of bright colors. I prefer mid to late afternoon outside if possible — weather permitting and it’s a nice enough day. I want it to be outside in nature, trees rather than desert.

I’d like there to be like an actual service inside somewhere because I’d like all of my jewelry to decorate the space. I wear a lot of jewelry in real life. I never have on fewer than forty-one pieces, my ex-boyfriend counted for me. Those are perpetually on my body. That’s just how I go to sleep and wake up so as I move about the day there’s a lot of other jewelry, and I own a lot of it, and people like it and they want it, and I don’t know who to give every piece to because it changes all the time, so my funeral is going to be decorated with my jewelry,

It’s also going to have a lot of really bright colored gilliflowers and daisies everywhere. People are going to dress in color — no black or neutrals really. White is okay, but I don’t want cream, beige, brown, or gray, just color, vibrant color.

I would also like my favorite photos from my travels to be displayed. I’ve traveled quite a bit. There’s a folder on my computer entitled “fav” and the password to my computer is written down in my death-care directive. I’ve written out directions to use these photos, print them off, etc.

It will start mid/late afternoon. There will be the service portion of it, where there will be Rumi poems read. I’ve selected a couple. There will be some songs — maybe my mom’s favorite hymn if she’s still alive. If she’s not, they don’t have to sing it. I don’t care much for hymns. I’d like a funeral procession. I want Little Dragon’s, “Brush the Heat,” to be played because I love that song. The first time I heard it I was like, “Oh my god, please play this at my funeral.” It’s lively and there’s a bunch of clap and snap. It just makes you want to dance. My body will be wrapped in a hot pink and orange shroud. The procession is going to lead to the vehicle where my body will be taken to a green burial site. I can imagine people want to stay there and watch as the vehicle drives off. The people will go back to the dance. I hope at that point that it’s starting to turn into night. I really like dusk, it’s my favorite time of day. I want my funeral to become a party. There is alcohol. There’s music. There’s food. There’re bright colors. There’s dance. There’re twinkle lights everywhere. That is my last party.

I can go to my final resting place and rest in peace, while the loved ones I leave behind can celebrate the fact that I lived and, hopefully, celebrate the fact that I accomplished something while I was alive.

HS: That sounds suspiciously similar to the confetti-parade-land that you experienced in your dream. [laughs]

AA: [laughs] Yeah right, confetti everywhere. I really also want the people who are at my funeral to take pieces of jewelry, put them on, and wear them. That’s how I can get rid of my jewelry without people fighting over it.

HS: That sounds like a good way to do it. Is there anything else you would like to share?

AA: I’d like to explain what my big picture vision is because I think this is important. When everything goes the way that it’s gonna go in my head (you like how that’s a when), everybody that is of age will have a very clear and concise written plan for the end of their lives. This will include how they want to be treated, what their decisions are for life support, what to do with their possessions, what their major accounts are, et cetera. Their funeral directions will be in that plan.

The other part is that there will be somebody to support the family after the death, to help clean up affairs from life. This can be accomplished by having separate centers across the country. I want to have duplicates of me everywhere. I don’t mean me-me, because I think I’m the shit — I mean people who are organized, intellectual, compassionate, kind, and knowledgeable who are there to support families in a rough period of time. It can either be part of the hospice program or an offering from funeral homes. I’d love it if we created this brand new bridge that is the end of life planner.

That’s my big picture vision — that nobody or family deals with death alone.


*Since this discussion, I’ve decided that I want my Facebook page to be set to the in memoriam setting upon my death.

**30 million facebook users have died since the site was created. It is unknown how many of those profiles remain active or were deleted by family members or were changed to memorial pages.

Deathstination— An Interview with Laura Hardin
Image from Laura’s Instagram: Deathstination

Image from Laura’s Instagram: Deathstination

There is one thing seeing dead people has helped me with. It is changing my point of view on suicide.

There is one thing seeing dead people has helped me with. It is changing my point of view on suicide. It’s not necessarily seeing the dead bodies, but seeing how the living people react to the dead body that is changing me. I don’t view suicide as selfish because I have been to that place. I almost was successful at it when I was 19. I understand the mentality of a person who has committed suicide, thinking you’re a burden, and nobody loves you. Thinking your death would actually be a positive because you wouldn’t be burdening the people you love anymore.

There was one funeral that I directed early on in my career where a gentleman who decided to hang himself. He had a wife and he had two sons. They were Catholic. In the Catholic faith if you commit suicide, a Catholic church will not allow you to have a funeral mass, so the wife wanted his death to be kept very hush hush. Her main concern was if I going to be able to hide the ligature marks around his neck so no one would know he hung himself— that wasn’t an issue at all since he was in a suit with a high collar. When we got to the church she wanted to see him first without anybody else there, so we had to keep everybody out in the parking lot while she looked him over. At the end of the funeral mass when we were recessing out of the church, one of his son’s walked up to the casket. He flopped over it and wouldn’t stop crying. He wouldn’t move so everything stood still while everyone stared. He was about 19 years old.

I wouldn’t ever want to put the people I love in that situation. Now when I get sad or depressed, the thought of wanting to commit suicide will come up, but I’ll remember that experience and think, “Yeah, I’m not going to do anything.” I’ll complain. I’ll say, “I give up,” but the next day I’ll get up in the morning and move on with my life. That’s how the funeral industry has changed me. It’s not necessarily about the dead. It’s about the living.

HS: Is it challenging to be seeing dead bodies everyday? For me and, I assume, anyone who’s not a mortician or in jobs that are ancillary to the funeral industry, seeing dead bodies sounds like it would be really emotionally intense. Is it for you?

LH: It is not for me. Not because I’m cold hearted, but because at the end of the day I didn’t know these people so I don’t have an emotional connection to them. I am able to do the work I do because I’m not devastated emotionally by the deaths. That’s the whole point of hiring me. I’m the person who is clear headed who’s going to know what to do. I can do it because I’m not in the grips of grief.

I am able to do the work I do because I’m not devastated emotionally by the deaths. That’s the whole point of hiring me. I’m the person who is clear headed who’s going to know what to do.

I took care of my grandmother when she died from beginning to end and that was emotional because I knew her. It was also really refreshing because it gave me control of the situation. I couldn’t control that she died, but I could control what was happening to the body. She was in the mortuary for about three days while we were procuring the documents so she could be cremated. It was a unique experience because not a lot of people get this luxury. Before I would leave work I would go back into the cooler, open up the drawer my grandmother was in, un-shroud her and say, “Goodnight.” Then I would re-shroud her, push her back in, and leave for the day. That was the only time I got any emotion from a dead individual and that was because I knew the person.

HS: That makes a lot of sense. Recently I’ve heard there’s a movement about sitting with the dead relative for three days to let yourself emotionally move on from the death. Have you heard of that?

LH: That’s actually not a strange concept. I mean it’s strange to our society now, but it’s really not a strange concept. In Buddhist cultures they actually have someone who sits with the body and chants prayers in the hopes that their prayers would help get the spirit to where it needed to go. Or at least that’s how it used to be— now we have these things called chant boxes. They are prerecorded prayers by Buddhist monks that are put with the decedent. If you look back in history within every culture, there is some aspect of sitting with the decedent. It’s a strange concept to us now because we fear death, but it’s not a new or original concept at all.

HS: Do you have a favorite death ritual?

LH: People like to talk about Tibetan sky burial, which is pretty cool. In Tibet they don’t have enough wood to build funeral pyres to cremate decedents and they can’t bury people either because the ground is too cold. So they have these individuals similar to morticians, called body breakers, who take machetes and break up the bodies. They will take the decedents remains to a high point, like on a hill, and vultures will come in and feast on the remains.

In my own work I’ve seen people do things I really like. For example, I used to work for one mortuary where we dealt with a lot of Gypsy families, and Gypsies like to party. They would always bring in goats and pigs and would roast them in the parking lot. They would have Crown Royale. We would get the cops called on us because we were being too loud. They would have the decedent changed. They would view the decedent one day in one particular set of clothing. Then we would bring them back in, take them out of the casket, and dress them in something else. Then they would view the decedent again the next day. They would have two, three days of viewing and partying.

Another thing I thought was really neat, was when I was with a Filipino family. They had requested cremation, so they viewed the decedent in a rental casket. We went to the church, and they had everybody write something on a little piece of paper— whether it be a story, a thought, a message for the decedent. One person in the family knew how to fold origami cranes. Before we closed the casket they brought this big box of different colored cranes, containing messages for the decedent, and they dumped them in there with her. She was completely in a bed of these multicolored cranes and she got cremated with all of them.

HS: You were saying dealing with the dead isn’t necessarily emotionally hard for you because they’re not your family, but what’s it like dealing with the living who are around the dead person?

LH: Dealing with the other funeral directors or dealing with the family members of the decedents?

HS: I meant the family so let’s start there, but then I will ask about funeral directors because now I’m curious.

LH: It is nerve wrecking to say the least. You never know what you’re going to walk into with a family. There are some families that come in who are so happy, death positive, and they know what they want. They’ve been through the process before. They’re accepting of the death. They all get along so it’s easy and it’s breezy, and you can laugh and make jokes with them. It’s a great experience to work with them. As much as you don’t want them to experience another death, if they do you hope they come back to use you because you feel like you want to be part of their family.

Now there are some people where they don’t get along with their relatives at all. They come in, they get into fights and you have to play referee — pull them off of each other, call the cops. It’s really exhausting emotionally as a funeral director. You want to pull them aside and scream in their faces that they’re acting ridiculous, “Everybody is sad. Everybody is hurt by the loss. You guys are making a difficult situation even more difficult by acting like jackasses to one another.”

Then sometimes you get families who aren’t angry, they’re not happy, they’re just sad. They cry all the time. It’s really weird when you have someone crying in front of you, and you know you can’t take that pain away from them. You know there is nothing you can do to absorb what they are feeling. All you can do is offer them a hug, give them some tissues, or try to provide them with a drink or some food. You never know what you’re going into and you always have to approach it in a very cautious way.

The most rewarding part for me about working with the living, is when I have people come in who are really skeptical of me— maybe because I’m younger or because I’m a funeral director and everybody thinks we’re in it to steal your money. We’re not. We’re all broke ourselves. You see someone come in with this fear, or this anger, or this hatred toward you, and by the end of the process their whole attitude has changed. They are very thankful and respectful. The best part is being able to prove to people that we’re not stuffy, we have good senses of humor, and we’re not in it for the money. We’re trying to help you in any way we can.

HS: You don’t control when people die so do you have to come in on holidays frequently? Is that part of your life?

LH: I am very fortunate because I’ve worked for mortuaries that believe it is important for their funeral directors to maintain a life outside of the mortuary. But yes, there are times where you will planning for a Fourth of July barbecue when you know the mortuary’s going to be closed, but then a death will occur on the third. The family will come in and say, “We need to have this service tomorrow because everybody’s in town for the holidays.” You have to suck it up, cancel all of your plans, and be there.

Death doesn’t take a holiday. It doesn’t subscribe to a 9-to-5 schedule. There are times where you’ll come in and you think you’re going to be busy but there’s nothing to do so you can leave at noon. There’s times when you think you’re going to have a holiday off but then you end up having to work a funeral service. It’s ever-changing.

Death doesn’t take a holiday. It doesn’t subscribe to a 9-to-5 schedule.

HS: What happens to bodies if mortuary offices are closed?

LH: There are always funeral directors on call, regardless if a brick-and-mortar funeral home is open or closed. When a mortuary shuts down for business at night we transfer our phone calls over to something called an answering service. They will always pick up and assist you — whether you are calling to figure out the date and time of a funeral service, or if you are looking to report a death. If a death occurred, they will call a funeral director and relay that there is an immediate need for assistance. That funeral director will call you from their personal cellphone, and sit and talk with you about what’s going on. They will personally go to the home or hospital where the death occurred, and they will pick up the body.

HS: I have a couple more logistical questions. What is legal to do with a body in California. For instance, how long can you keep a body in the home after someone’s died?

LH: Well legally there’s nothing in the books that says you have to use a mortuary, so you can do everything yourself. The only thing you have to do legally is report the death to the health department in the county where the death occurred. You have to get a death certificate completed and signed by a physician. You have to get a permit issued by the health department, or the local registrar, stating they have received the death certificate and have accepted the cause of death (i.e. there is no suspicion in regard to how the person died). Depending on whether you’re burying or cremating you can solicit a funeral home to either take the individual to a crematory or to the burial— most people don’t have vehicles that are equipped to transfer the dead. Legally you can do home funeral services if you want.

Legally you can do home funeral services if you want.

In regard to regulations against mortuaries though, we are not allowed to keep bodies out in the open. We legally either have to embalm or put a body into refrigeration within 24 hours of death. As long as we have a working cooler or the decedent is embalmed, the body can stay in our care until the family comes to an agreement regarding what they want to do with their loved one.

At one mortuary I worked for, we had an individual who stayed in our care for three years. The individual was not from America, was not a U.S. citizen. We had to arrange to have the individual prepared and shipped back to their country. There was an embargo, so we could not ship anything from our country to their country. The decedent had to sit around in the mortuary and wait until their home country lifted the embargo.

HS: Wow, what a crazy story. My next logistical question is in terms of dealing with the body. You can bury the body, and depending on the cemetery it can be a natural burial, and you can cremate bodies at the correct location— what are the laws about burying on your family’s property or burning on a pyre at a private beach?

LH: Yeah so, you can’t do those things [laughs].

HS: [laughs] Those are illegal.

LH: Yeah, in order to operate a crematory you have to have establishment licenses and you have to be certified. So no, you can’t take grandpa and put him on the front porch in a bonfire. That also would not produce enough heat to cremate a decedent. It would just char his flesh. You can’t cremate on your front yard. You also cannot bury on your own property, you have to bury within a designated cemetery. People believe that it’s their death they can do whatever they want to do but there are regulations in regards to where you can do certain things.

HS: Right, totally. What is it like working with the other people in the funeral industry? The other living?

LH: In California, the industry is predominantly female now. When I went through the program there were about three or four women to every one man in the program. The only real issue with working at a mortuary with a bunch of women is all of our periods sync up and we all become crotchety old ladies to one another. We are all passive aggressive during one week of the month, which is happening right now [laughs].

I haven’t experienced a lot of outright sexism— where people tell me they don’t like me because I’m a woman, or that I shouldn’t be doing this because I’m a woman, or that I should be at home pregnant. However, there definitely is a bias when it comes to available management positions. Women in the industry typically get overlooked for these positions. They hand them to men regardless of if the man is qualified or not. It’s very subtle. You have to be aware that it’s happening, because they’re not outright saying it.

Women in the industry typically get overlooked for these positions. They hand them to men regardless of if the man is qualified or not.

For the most part, it’s work. It’s like any other work environment. You work with people have different views than you and you have to find some harmony. I’ve worked for some mortuaries where everybody gets along like they’re one big family. We go out and party with each other. It’s all about environment and the different personalities. That’s not isolated to the funeral industry — it’s just the workforce.

HS: It’s interesting to have the death industry normalized — hearing, “It’s just a place we work at.” I definitely feel like there’s this whole shroud of mystery around it our culture places on it.

LH: Yeah I definitely feel like I’m part of the midnight society from Are You Afraid of the Dark. People think we’re in the back stealing organs and selling kidneys on the black market. People think we’re all necrophiliacs and we’re having big fuck parties in the back. No, it’s an office. It’s only unlike your office in that we have dead bodies sitting in a cooler in the back room. That’s the only difference. We’re not satanists, we’re not doing rituals on your loved ones, we’re not having orgies. There’s not a lot of debauchery that goes on in mortuaries, just paperwork — a lot of bureaucracy and paperwork.

There’s not a lot of debauchery that goes on in mortuaries, just paperwork — a lot of bureaucracy and paperwork.

I will say this, because I get this a lot on Instagram: Don’t go into the funeral industry just because you are into goth culture. Don’t go into the funeral industry because of money, because there is no money in death care. There is none. We are all broke. I’m not saying that to deter people, I’m saying that because it’s the truth. I get a lot of people who reach out to me on social media asking me how they can become a funeral director or embalmer. They always ask how much money do you make. I worked for minimum wage for many years as a licensed funeral director, until I got my second license as an embalmer. So there’s no money there.

I’m pretty sure you are aware of Caitlin who does Ask a Mortician and Order of the Good Death. She’s doing her part for the death revolution and is encouraging people to be a part of it. I think people misinterpret her message and go straight to thinking, “I should become a funeral director.” But she actually just did a blog post about how she can not encourage you to become a funeral director.

If this is something you want to do, really think about it. Think about what I said about the low pay, the unusual long hours and, having to be a selfless person. How it is very conservative. Working in the mortuary is nothing like the Addams family. We don’t have guillotines and we not playing games with electrical chairs. It’s not goth and it’s not creepy. It’s like any office job. We’re pushing paper and making phone calls. It can be very monotonous work. I would say to anybody listening to this thinking about getting into the funeral industry, do some research. Talk to funeral directors. If you can find a mortuary that would allow it, try to go there and see what it’s like for a day. I guarantee you it’s nothing like you think it is. It is probably far less exciting than you make it out to be in your brain.

HS: Yup. Totally. That’s really good advice for any career actually. What are some of the biggest lessons you’ve learned doing mortuary work?

LH: Biggest lessons [laughs]. Don’t ever tell people good morning when they come to a funeral home, because they’re not having a good morning. You are liable to get your head ripped off and be verbally assaulted by someone.

Other than that, live your life. I am so much more excited about living now I am a funeral director and I realize life is fleeting. Our society has this belief that we’re all going to make it until old age and that’s not the truth. I see just as many dead babies and dead twenty year olds as I see dead 80 and 90 year olds. As cliche as it sounds, it’s really true: you don’t know how much time you have left. You have to seize the day, carpe-the-diem. If it’s your day off and there’s some weird idea you want to do, go do it. Don’t let people stop you from doing it. Don’t stop yourself from doing something because other people may think it’s weird. It’s your life and one day it’s going to be over. You don’t want to sit there and think you wasted your life because you were too busy trying to please other people by conforming to this idea of what a normal person and life should be.

We’re all going to die so do whatever the hell you want to do. Bukowski had a really good quote where he said (I’m probably not quoting it 100% correctly) “Everything will kill you both slowly and fastly, find what you love and let it kill you.” That’s why I try not to be so hard up on people. If you want to go out and drink, go out and drink. If alcohol is what you love, if you like hanging out at a bar, go drink. It’s your body. It’s your life, do what you want with it. It doesn’t affect me. It doesn’t affect my life. You got to do what’s right for you.

We’re all going to die so do whatever the hell you want to do.

HS: Do you think society would be better if people were exposed to dead bodies?

LH: Absolutely. I think everybody should experience something with a dead body. Non-sexually of course [laughs]. I think everybody should experience taking care of someone they loved who died. It’s a very powerful experience to do something as little as even coming in and styling the hair on your mom, or come be present and watch me do my job. You can legally come in and watch your loved one be embalmed or witness the dressing. I have people who do it all the time. They want to come in to watch me dress the decedent, or they want to participate in the dressing, or they want to wash their loved one, or they want to do cosmetics. I think everybody should be as involved as they can be because at the end of the day it will give you some control back in an otherwise uncontrollable situation.

HS: I’m going to switch to Deathstination now. How did you get into Deathstination or how did you have the idea for it?

LH: I was working as a funeral director and I got this really weird idea. I thought it would be really cool to go out on Halloween and put jack-o’-lanterns on famous people’s graves. I looked up some people I thought would probably appreciate having a jack-o’-lantern on their grave and the person I found was Bela Lugosi. He was buried in Culver City at Holy Cross. I asked my friend, “Do you want to go out on Halloween and put this on Bela Lugosi’s grave?” My friend also decided to take the reins and be like, “Oh I found out Darby Crash from The Germs is buried here.” Then I was like, “I found out the original Uncle Fester is buried here, and John Candy and Sharon Tate with her unborn baby, and members from the original cast of The Wizard of Oz.” We decided to look at all of these people’s graves and take pictures with them. I was pretty new to Instagram, but I put those pictures up and I got a good response.

Then I started finding communities on Instagram dedicated to cemeteries and headstones — all these people interested in beauty of cemeteries. I noticed it was more about the photography and less about the decedent. I’ve always been really interested in the questions: Who am I? Where did I come from? How did my ancestors live? I’ve always been very inquisitive about my own history, so I became very inquisitive about these other people’s histories too. Who were these people? I thought other people would be interested in knowing these are more than just headstones. There’s someone buried there who had a really interesting story. I started doing it. People gravitated toward it.

HS: What cemetery did you go to today?

LH: I stayed local today. I feel the most underrated cemetery in Los Angeles county is Inglewood Park Cemetery. It’s in a not so good area. People I think are deterred from visiting because they hear, “Inglewood” and think, “Violence and people getting shot.” It’s actually a really beautiful cemetery. There’s a bunch of famous people buried there and a lot of really big beautiful monuments. I also like it because it’s not one of those cemeteries in Los Angeles county overrun with hipsters.

I used to really like Hollywood Forever but my opinion of it has soured. When I first started doing this, cemeteries weren’t places people wanted to go, Hollywood Forever included. But now, with everything they’re doing with Cinespia, the summer movies they show in the cemetery, and the concerts they have in their masonic lodge, it’s starting to generate a lot of traffic. Negative traffic is generated as well. People are being very disrespectful to the decedents are buried within— their headstones, and their monuments. Because of this, Hollywood Forever has started to police individuals who go into the cemetery just to walk around. I don’t feel as comfortable there as I used to, so I go to Inglewood.

The people at Inglewood Park Cemetery are also always really helpful. Every time I go there I get a cemetery grounds crewman who comes up to me and asks, “Hey, do you need help finding anything?” They’ll take you to graves you never knew about. They’ll say, “Do you know this person is over here? Ray Charles is right there. Want to see Ray Charles?” I found a couple new people there who are aren’t famous but they’re interesting, so I went to take photos of their graves.

HS: Say you find a headstone that intrigues you, how do you go about figuring out their history and what’s interesting about their lives?

LH: I utilize google searches and websites like findagrave.combilliongraves.com. I use ancestry.com to find documents and census reports. I try to find copies of newspaper clippings and obituaries. Before I go to a cemetery, I will sit down and try to figure out who is buried there. Why should I go there? Then when I find interesting people I go take photos. While I’m in the cemetery I will usually find interesting epitaphs and monuments. I’ll take photos of those out of curiosity. Then I will take the name from the stone and research it online. I also network a lot with other taphophiles, other cemetery enthusiasts. I find out a lot from them.

When I make vacations to go to places outside of California, like I recently did with Goldfield and Tonopah, NV, I typically seek out museums or welcoming centers in these small communities. Most cities have those, and you can go there to read up about the history of the town. When I show up to these historical societies I find people who work there who know a lot about the cemeteries. Then I pick their brain for information. Sometimes they’re generous enough to take me out and show me around.

HS: That sounds really cool. I imagine you end up meeting really interesting people by going to those places.

LH: A lot of older people. I have a lot of friends in their 70s [laughs] who I stay in touch with via email.

HS: The tech-savvy, death-obsessed, older generation of the U.S. [laughs]. What is your favorite part about doing Deathstination?

LH: I get really excited whenever I can find someone who’s not famous but has a really interesting story. I get this feeling that, “I know something no one else knows.” I’m all about finding the common man, the work-a-day person, that got murdered or invented something or did something that was really cool or interesting or kooky or weird.

I also really appreciate the positive feedback I get from people. There have been several times where I’ve thought to myself, “This is really weird. Why do I do this? Does anybody really care about this? Do any of the people following me really read this?” It’s really rewarding when I get feedback from people saying, “I read this and it was really interesting,” or, “Can you help me find that person's grave? I’m going there this weekend.” I can see people are getting inspired to go out and visit graves themselves.

HS: What’s one of the most interesting everyday person stories you’ve found?

LH: When I was up in Colma, CA earlier this year I went to the museum and I was talking to the president of the historical society who told me about this gentleman’s grave who died attempting a stunt. He wanted to jump off of The Golden Gate Bridge, but survive. He was having a difficult time procuring the permits to do such a stunt so he decided, “Eh, I’m going to do it anyways.” He actually did survive the fall, but he ended up drowning. He was wearing parachutes, knee pads, and floating devices. All of this equipment weighed him down, so once he got into the water he couldn’t keep his head above water.

Recently when I went up to Tonopah, NV I learned about the old gravedigger. He is buried within the Tonopah cemetery, but the individuals working to renovate the cemetery have yet to locate where his burial plot is. He was known for going to the saloon and getting beer at a very specific time each day. There was one day he didn’t show up so someone from the bar went down to the cemetery. When they got there they saw him climbing out of a grave. They asked, “Where have you been? We’ve been waiting for you at the bar?” The gravedigger climbs out of the grave and he replies, “I just finished digging this grave. I stayed down here because it feels kind of homey. It feels right for some reason.” He ended up getting sick that night and he was dead by the next morning. They buried him in that grave.

They know what cemetery his grave is in they just don’t know which area. The foreshadowing in that story is so interesting… maybe he knew he was going to die.

HS: That’s crazy, like some sort of otherworldly insight. How do you lose track of a grave? [laughs] Just because it was an old grave, not a fully set up infrastructure, or…

LH: People have been getting buried for many many years, and a lot of cemeteries fall into disrepair. The towns of Tonopah and Goldfield, in particular, are ghost towns essentially. There isn’t anyone to take care of the cemeteries. Over the course of time people vandalize the graves and there’s normal wear and tear— the headstones become weathered or they break and fall, or there are fires. Just life. Things decay and things wash away. Then people have to come in and try to find old cemetery and burial records. When they find where people are buried they work to get them monuments and build up the cemeteries again. That’s what the people of Tonopah and Goldfield are doing currently.

Over the course of time people vandalize the graves and there’s normal wear and tear — the headstones become weathered or they break and fall, or there are fires. Just life. Things decay and things wash away.

Also, with a lot of western graves too, the headstones used to not be stone, they used to be wooden markers. Those decay very easily.

HS: Where has your favorite place you’ve visited?

LH: My favorite place was actually Goldfield, NV. I’m completely in love with that town. I am considering going up there on a monthly basis to continue doing research and help with locating graves. Goldfield is actually where I want to be buried. You can still be buried there, you just have to notify the city that you’re coming. They don’t have any regulations in the cemetery. You can do whatever you want. Be buried wherever you want to be buried. Have whatever headstone you want to have.

That’s one thing I really hate about cemeteries in big cities like Los Angeles, there’s so much regulation — you can’t go to these cemeteries at certain times of days. They don’t want you there unless you’re there for a funeral, otherwise, you should ignore this place. I hate the idea that cemeteries are something that should be feared, that the living shouldn’t be there and you should be policed while you’re in there. I think you should be allowed to go into a cemetery and walk around. You should be allowed to feel inspired. If you want to go there and have a picnic, you should be allowed to go there and have a picnic.

I think you should be allowed to go into a cemetery and walk around. You should be allowed to feel inspired. If you want to go there and have a picnic, you should be allowed to go there and have a picnic.

HS: Nice. I’ve never been there so now I’m curious. I did watch your youtube video on it which was pretty awesome. All of the different stories you found, and you had that man tell one of the stories…

LH: Oh yeah, him and I, we email every week. He actually used to work in the old Tonopah funeral home. He’s not a licensed funeral director or an embalmer but when he was younger he used to work in the funeral home picking up the dead bodies. He got a kick out of having that in common with me. He likes to send me newspaper articles and old business cards from the old funeral home, which isn’t there anymore. He has little artifacts from the old mortuary that he sends to me.

Another one of my favorite places was Mountain View Cemetery in Oakland, California. I was thrown-off when I went there earlier this year because you turn down this street and it looks like a housing development. There are all these cookie cutter buildings, but then you start reading all the titles on these buildings and you realize, “Oh! crematory, chapel, mausoleum.” There are these big gates you drive through, and if it wasn’t for the headstones you would never know it was a cemetery.

People were in there living life. There were people hiking because it’s a really tall steep hill. There were people there doing Crossfit. There were yoga groups going on. People were there with their dogs and dogs were running around the headstones. People were there drawing pictures of mausoleums and taking photos. There were people doing headstone rubbings. There were some families there having picnics. There were little kids playing in between the headstones making flower chains. There were, of course, people like me there to legitimately look for graves. That was really refreshing because you would never see that in LA. In LA if you went in there and tried to start hosting a yoga group, there would be someone there in a matter of seconds telling you to get out. It was refreshing that this cemetery was so full of life.

It was refreshing that this cemetery was so full of life.

HS: That sounds awesome. I know someone who lived in Germany and she said the cemeteries there are just like parks. She would go hang out and read a book or you could take a dog there. It wasn’t separated like you see so often.

LH: That’s how it should be, in my opinion— not separated. It should be treated like a park. As long as people are not vandalizing headstones or trying to grave rob, as long as people are being respectful, they should be able to do what they want in cemeteries. There’s been a huge heated debate recently about Pokemon Go. Pokestops are in cemeteries and some people think that is disrespectful. I think everyone needs to calm down and relax. All they’re doing is walking around looking for little imaginary creatures on their phone. Leave them alone. I know a lot of people who work for SCI (which is the big corporation of funeral homes and cemeteries in the United States) and they recently got an email about how to spot people playing Pokemon Go and how to get them out of thier cemeteries. I really feel that’s the wrong message to be putting out. Shame on you SCI and anybody from the corporate office who is listening to this. Let people live their lives. They’re not hurting anything. Ok that was my rant.

There’s been a huge heated debate recently about Pokemon Go. Pokestops are in cemeteries and some people think that is disrespectful. I think everyone needs to calm down and relax. All they’re doing is walking around looking for little imaginary creatures on their phone.

HS: It’s really interesting because with Pokemon Go, you are allowed to go wherever living people are and, as long as you are being respectful and not trespassing or robbing people, it’s fine. It seems like that can apply to the dead as well. We should be able to interact with the dead as long as we’re not being assholes about it.

LH: Exactly

HS: Where is your dream destination?

LH: I have a laundry list of places I want to go. There’s one cemetery in Romania, it’s called Merry Cemetery. Someone took it upon themselves to start creating mosaic headstones that depict how the person died. I would like to go to Germany because my ancestors came from Bavaria— maybe see if I could find my relatives. I would like to go to Norway and see the old Viking burial ships. I would like to see the Salem witch graves over in Massachusetts. I’d like to spend an October in Massachusetts just checking things out. Maybe go to the Philippines and Manila. People actually live in the cemeteries there because it’s one of the safest places to be.

HS: Why is it safe? Because people don’t want to do wrong in the cemeteries?

LH: You know I’m not really sure, but there’s not a lot of crime in the cemeteries so they’ve turned them into housing communities.

HS: That’s fascinating. There are so many places, this can be an endless question.

LH: Oh yeah there’s so many places. You’ve got the catacombs in France. You can go to ossuaries. You can go to Spain or Italy and see saints buried in churches.

I recently featured this little town in Colorado because it won an Instagram contest I held. I’m hellbent on going there now. I’m going to go to Frozen Dead Guy Days in Nederland, CO. It’s a festival that is completely dedicated to a Norwegian man who is cryogenically frozen in a shed in the mountains of Colorado.

HS: That sounds awesome! Ok, last question, which is kind of funny because I found you when you answered this question on one of my Instagram posts. What do you want your funeral to be like?

LH: I want everyone to be miserable. That’s my main thing. I don’t want any, “Don’t weep for me because now I’m free,” bullshit. No, I want you to be miserable. I want people coming to my funeral to break down and cry because they realize they lost one of the greatest people they will ever know in their lifetime. I want people to be sad. That’s what you should do at a funeral, be sad [laughs].

I do not want to be cremated. That’s kind of an odd thing to say in today’s society because we’re very pro-cremation nowadays. I want to be viewed. I want to be in a coffin, not a casket. I want to be buried somewhere where people will have the ability to interact with my grave. I want to be at Goldfield cemetery. I want to have an upright headstone. I would like for my headstone to possibly say what I died from. That’s one thing I like about old Western graves. If you ever go to a ghost town, like Tombstone, AZ, they put all your statistics on your headstone. It wasn’t epitaphs like, “loving mother, daughter, sister.” I swear if anyone puts that sort of crap on my headstone I will haunt them for the rest of their life. I don’t want to be simply known as someone’s mother or sister or wife or daughter. I’m so much more than a woman, I would hate for my headstone to show only that. Then have some black calla lilies and I really like the song Midnight Radio by Hedwig and the Angry Inch — I would like that to be my funeral song.

I swear if anyone puts that sort of crap on my headstone I will haunt them for the rest of their life.

HS: That sounds good though. Black calla lilies are really cool.

LH: I also like post-mortem photography and Victorian mourning. I’m very into that aspect of death. If you can implement some post-mortem photography, do that. Get the pictures of my dead body up there on the internet (or whatever method we’re using at the time of my death to share photos with other people).

HS: Right, totally [laughs]. Who knows what that will be. Ok, well thank you so much, is there anything else you wanted to say or ask before we go?

LH: I think I’ve said everything I wanted to say, but to sum everything up: be very miserable at my funeral; leave Pokemon Go players alone; stop policing your cemeteries and treating people like they’re weird for wanting to visit. That’s what cemeteries are for


This interview has been edited and condensed.

Image from Laura’s Instagram: Deathstination

Laura is a mortician based in Long Beach who vacations at cemeteries so she can unearth lost stories of the dead. Learn more about Laura in this autobiography she wrote for Adventures in Deathcare. For more from Laura follow Deathstination on Instagram and on YouTube. Deathstination is made possible through supporters on Patreon. If you think what Laura is doing is rad, please consider donating to the project HERE.

The Dying Therapist— An Interview with Lisa Greig

Interview with Lisa Greig. How do you help a friend through the death of a loved one? How do you avoid being put on a ventilator at a long term care facility while you’re still young? How do you respect your Grandma’s end of life wishes?

Lisa Greig opens her TEDx talk by saying, “I’m dying, but then again so are you.” She is a social worker who believes focusing on having a happy death will result in a fulfilling life. In this interview she shares insights from working in trauma centers and with bereavement clients. She answers the questions: How do you help a friend who’s loved one has just died— and what shouldn’t you do? What will help when you lose someone? How do you prepare for a tragic accident? How do you talk to an aging grandparent or parent about their end of life wishes? And so much more. Enjoy this edited interview with Lisa Greig.

HS: In your talk, you mention that your family is very open about death, which is amazing. When did you realize that death was more than something your family talked about, but a subject you actually wanted to focus on?

LG: It wasn’t until I was in my undergrad. I played on my university basketball team which is what drew me towards the university that I chose. I actually started off as business, which I did a year of and I quickly went, “Whoa, this is not for me.” There was no passion for me. It was a great program, just not for me. So I thought about what I wanted to do, and social work really stood out. I wasn’t drawn to social work just for helping and caregiving, which is why a lot of social workers are drawn to the profession. For me, it because I love puzzles and patterns, and I think that’s what humans are. To help put those together, to figure them out in detail, and deconstruct issues — these were the things I loved about being a social worker. In that moment I was thinking, “If I do social work, what am I going to do with it?” It was a very practical, logical side of my brain. I can’t just be a social worker and not know what I’m going to use it for. It was that moment when I realized it was grief, bereavement, end of life. That’s what captured my curiosity more than anything.

HS: Do you feel like you want to help people explore death because it’s something that you also need to explore?

LG: There’s definitely what I would call the rabbit hole of mortality. Even though I’m death-obsessed and I’ve embraced it, there’s still an unknown piece of death. I never want to shy away from that. I don’t ever want people to be like, “Oh, don’t worry about it, it’s not scary at all.” No, it is. I want to validate that, because there’s nothing worse than someone being like, “This is my experience,” and then being silenced, right? So more than anything, acknowledge it. Then talk about the whole other side to it. Which is life. I think the barrier we have to get through is realizing that we’re all on a timeline, but we don’t know what our timeline is. So let’s acknowledge it, let’s not pretend like it’s not there. Then we can just set it off to the side a little bit, so we can focus on what we want to do with our time here. That’s more of my driving force than anything.

Death can be a rabbit hole that you go down. You don’t ever get answers. Talking about your death doesn’t mean that you’re going to come to this be-all, end-all conclusion. That doesn’t invalidate people with their own cultural, religious and spiritual values. Depending on what your religious belief is, some people do have an end game to death. I think it still has uncertainties — people don’t know what it looks like to get there. For me, of course there is fear of the unknown, but there is also the choice to not get hung-up on fear. This’ll be the type A in me, how do I get control of it? And so you talk about it, right? I think it’s the simple things like, here are my advance care directives or let’s talk about end of life planning. What do I want for myself? Is it cremation? Is it a burial? I think that just by taking some control back, I think there’s comfort in that.

HS: I play with this balance a lot because I also find a need to take control, but it also seems like death is the ultimate loss of control. How do you reconcile those two things? Or do you just accept it and move on?

LG: I think it’s accepting, to be honest. Life throws at you two choices: fear or love. Right? If we allow ourselves to constantly live in fear, then suddenly, we’d just become paralyzed by our mortality. And I hope that’s the choice to live in love is what I can help people with more than anything. That reconciliation that it is true, I really am out of control, but I can choose to live a healthy lifestyle. I can take care of myself, my whole self. Not just my physical self, but my mental and emotional self as well. I take that holistic approach, which I think is so healthy. Those cases still turn up every day though — the forty-year-old mother diagnosed with breast cancer, or the fifty-two-year-old non-smoker who’s never been healthier and has lung cancer. That’s horrible, and shows we don’t have control. But do we always want to live in fear, and my answer is always no.

Life throws at you two choices: fear or love. Right? If we allow ourselves to constantly live in fear, then suddenly, we’d just become paralyzed by our mortality.

HS: Agreed. Are you regularly working with people who’ve had a loved one die?

LG: More often than not. I have a lot of different practices, but a large portion of the people I work with are grieving individuals. And that’s where my passion is, whether it’s anticipatory grief or people in the throws of grief.

HS: A lot of people in my life have had really close loved ones die. As someone who’s not a counselor, how should we show support for the living people who’ve lost someone?

LG: I think the best thing that we can do as humans is listen and offer empathy. Empathy isn’t trying to make things better. I think we project our own discomfort with death. You see this in comments like, “At least you still had good times with them,” or, “They’re in a better place now.” That’s not listening, because they’re grieving that loss. I think the best thing we can do is validate, “I’m so sorry, this must be so hard.”

Empathy isn’t trying to make things better.

Something I’ve heard from grievers too, is that our human instinct is to say, “Let us know if there’s anything we can do for you.” That’s so kind, but I’m yet to meet someone in the throws of grief who can say what they need done for them. Sometimes the best thing is just, “I would like to bring you a meal. Can I do that any time, or is there a day that’s better for you?” Or, “We’ve arranged for this for you.” Or, “Here’s a gift card for a restaurant that does delivery, or you can go out because you need a break.” Or, “You probably haven’t gone to Walmart to get your toilet paper. Let me go and pick up some things for you.”

Those are prime examples of things that can go a long way for people who like tangible things, who want to know, “How exactly can I help?” But I think the simplest and easiest thing we can do is just listen, and hold space. Just sit with these people so they get to go outwards with their grief. If you can hold space for them and just be with them them, that’s one of the greatest gifts you can give.

If you can hold space for them and just be with them, that’s one of the greatest gifts you can give.

HS: On the other side, are there any major NO-NOs that you shouldn’t do when your friend has lost someone?

LG: I think, “I know exactly how you feel.” That one is a huge red flag for people. I’ve heard that over and over. If I tell one person, “I know exactly what that’s like.” They’ll respond, “No, no you don’t, because you didn’t lose this person,” or “your relationship to them is different.”

It’s downplaying their emotions. People with depression share the sentiment, people ask, “When are you going to get over it? Can’t you just get over it? Are you still grieving? When are you going to be yourself again?” Those shaming comments strike right to the heart of people who are grieving. We live in a world where I hope that everyone is doing the best that they can. Grief isn’t fun to be in, it’s like a dark cloud. Everyday is hard. I tell people I work with, “You’re redefining your new normal.”

Death changes us. The new version of us isn’t good or bad, it’s just different. It’s a growth and transformation, and some people aren’t comfortable with that process. There are also the secondary losses that we experience after we’ve gone through death. Sometimes their friend groups change — some of their relationships will get stronger, and some of them will completely dissipate. And that’s normal.

Death changes us. The new version of us isn’t good or bad, it’s just different.

HS: It’s got to be pretty shocking though.

LG: Oh, it is. It absolutely is. And I think that’s when people say, “I just don’t feel like myself.” Because part of them is not themselves anymore. And it’s ok, but it’s another loss for them to grieve when they’re already grieving one.

HS: What major lessens have you learned from working with people who are in bereavement?

LG: They all sound so cliché, but they’re so true. Life is short. Even for people who lose a partner after sixty years of being married. They’ve had sixty years together, but life can change in a complete instant. That’s true, and it’s true over and over and over. Relationships are so important. I know that grieving is a consequence of strong relationships, or can be, but at the same time they’re what get you through it. And if you’ve read those five quotes by that hospice worker — they’re bang on.

The people who move through their grief quickly are strongly rooted in themselves and their relationships. They have fewer regrets, and are actually living a life they choose for themselves. The same goes for the people who get the palliative diagnosis or the terminal diagnosis — they’re in the doctor’s office given x-amount of time to live. If they reflect on their lives and think, “No, I’ve done what I wanted to do.” It will still be hard and painful and difficult, but there will be some closure too.

Back to those five quotes by that hospice worker — time and time again when I’m sitting with people in their grief, those show me whether they’re on a healing path or whether they’ve got some hurdles to get through. How many woulda-coulda-shouldas are they left with?

The people who move through their grief quickly are strongly rooted in themselves and their relationships. They have fewer regrets, and are actually living a life they choose for themselves.

HS: Just seeing those quotes makes me want to get that information in front of everybody, so many people don’t have it on their radar at all.

LG: I haven’t found the magic equation that helps people identify with them, because some people read them and they don’t resonate as much, you know? I think anyone who’s experienced any kind of loss (and loss doesn’t have to be death, loss can be in marriages or friendships) are more likely to connect with the quotes. Some of them can be like, “Yep, I need to make those changes now.” People who’ve experienced an accident, or maybe an temporary illness, will feel like they’ve got a wakeup call.

HS: You also mentioned that you had a really close friend and mentor, I think it was your basketball coach, who died.

LG: Yes.

HS: How did you navigate that grief?

LG: I went and saw her probably nine months before she would have died, and I had a wonderful visit with her. There was still a lot of hope at that time. I’m glad that I didn’t know that was the last time I’d see her, but a part of me treated it like it was. So there wasn’t like this moment of, “We’re saying everything we need to say,” but there was that gift of being present. Talking and laughing and having such a wonderful time. The phone call that I had with her, we just talked for an hour. I knew that would be the last time I talked with her. Again, I didn’t tell myself, “I’m saying goodbye forever,” even though I knew that — I knew that’s where the raw emotion was. It was having that time with her that was invaluable. I think that that navigated my grief more than anything. And knowing, after she had died, that I was going to go to her funeral. I wanted to be around the people who loved her most. I knew for me that is what was needed and that what would be healing. There was a personal family funeral that we attended and we also held a celebration of her life. Just being there and doing those things and being around my closest teammates — it’s just so powerful to talk about it.

She was a coach, so let’s not kid ourselves, not everybody had a great relationship with her. There was competitiveness. People were benched who didn’t feel that they should have been. But just to share and laugh and cry, that was the most healing thing for me. Once I left the funeral, I had to leave that piece of me behind. She was a huge reason I went back to Toronto once or twice a year. When I go back now to see everyone, there’s a loss of what that city was to me. Celebrating her life is what helped us grieve, allowing ourselves to feel the sadness, but also the joy. The fun stories. She said ridiculous things. We always joked that she had no filter. She never did. We had a lot of those things to laugh over. There’s something about healing in a group that really works, and I think grief groups are powerful for that reason.

Celebrating her life is what helped us grieve, allowing ourselves to feel the sadness, but also the joy. The fun stories.

HS: What advice do you have for someone who has just lost someone?

LG: Talk to someone. Go see a counselor, even if it’s just one time. Just share your story. I think there’s something about sharing with those closest that isgood, but there’s also a protective instinct that prevents us from going as deep into our grief as we want to. We’re being delicate. We’re trying to protect others from their own grief by not sharing too much about ours. So go talk to someone, and when you’re ready, find a grief group in your community. I facilitate them. I see how powerful they are. It’s so nice to be sitting in a circle with someone who can say, “Me too,” and actually relate to you— where you don’t have to explain how you’re feeling, because people there just get it.

It’s so nice to be sitting in a circle with someone who can say, “Me too,” and actually relate to you — where you don’t have to explain how you’re feeling, because people there just get it.

HS: People who can offer understanding are so powerful.

L: It’s so powerful. As much as our grief is very unique, there are so many commonalities. We know our experience, our feelings, and the struggle of our days, but when you get in a group of people and hear that other people are going through it too, you feel normal. It’s a powerful thing to have, not just our grief, but many aspects of ourselves normalized.

HS: Something I struggle with a lot as a death-focused individual, is this balance between being really curious about death, thinking it’s good to think about, but also not wanting to downplay the tragedy of death. How do you deal with that?

LG: The big thing is normalizing the fear. It’s about saying, “This is hard. This is scary, but it’s also this universal and we all feel it.” I’m not up here telling you that I’ve come to terms with it and everyone else should, because I haven’t come to terms with death either. I don’t know what it all means. What I do know is that talking about it in group forums, addressing the elephant in the room, does help. I think it’s essential that we validate the fear.

Sometimes, I think we downplay things too much in our culture. It’s like any diagnosis, right? For example, we can essentially live with diabetes now, type one or type two, but we don’t want people to say, “Oh yeah, but don’t worry. You can just take an insulin injection. It’s all good.” No, no, no. It’s still life changing. It’s still a huge inconvenience. It’s still painful. It still requires a lot of management. So let’s educate ourselves on it so we can be aware of the struggles. The struggle won’t go away, but we can acknowledge what’s going on. I tell all my clients, not just my grief clients, you’re allowed to throw yourself little pity parties, you just can’t stay in them. When we look at the state of the world right now, it is so easy to say, “I shouldn’t complain, there are so many people worse-off than me.” I say to my clients, “You’re right. There are so many people worse off than you, but there are so many people better off. We just need to talk about you, because that’s all that matters.” Let’s not downplay our own struggles, because somebody’s worse off than us.

I think gratitude gets us through everything.

It goes back to mortality and our own fear of death and dying. You’re right, it’s totally scary. But not talking about death and not thinking about it — how has that worked out? It hasn’t. We need a different approach.

But not talking about death and not thinking about it — how has that worked out? It hasn’t. We need a different approach.

HS: Oftentimes, people don’t want to acknowledge death, so I hesitate before talking to others about mortality. For example, my Oma has just turned 80… Well, first of all, I should probably ask my dad if he’s talked to her about advance healthcare directives. I’ve thought about talking to her, and it almost seems more intense now that she’s old, and in that time when we expect her to die, to bring up, “You’re going to die. How do you want me to deal with this?” Do you have any advice on that?

LG: I think we can only ever approach things from ourselves. A lot of people would say, “You’re 80, you need to talk about this.” But then Oma, or like my own grandma who just turned 80, says, “No, I don’t need to talk about this.” Especially with grandmothers (both of my grandfathers have died, and I never had any of these conversations so I can’t speak to what they would be like), they’re the matriarchs of families. They’re kind of like police officers who serve and protect. I think when a granddaughter or child goes to them and says, “I think about this because I want to do the right thing. I know that this is an awkward and hard conversation, but I want to have it. I want to know what you want because I don’t want to fight about this after. It’s going to be hard enough when you die, Oma, but I want us to able to get together and celebrate and cry and not be talking about flowers or details. I want us to all be on the same page, and this conversation is the only way we can get there.”

HS: What about family reactions? When you went and talked to your grandma, I know you said your family is super death-supportive…

LG: My dad is the eldest of three siblings. I talked to Dad after talking about this with Grandma and was like, “FYI, this is what we talked about, and this is the information I got.” He wasn’t surprised by any of it.

I was like, “You should have a conversation with your siblings about who’s going to have the conversation with her next because a conversation you had with your daughter in passing won’t stand up with relatives who are her health proxy. I will absolutely be there to say, “No, this is what grandma would want,” because I know, but I’m not her health proxy. So I’m passing information onto you three who have the joint power of attorney. This is a great opening for you guys to sit down and one of you to call up your mom up and say, “So I heard Lisa had a conversation with you.” She might just say, “Yep she’ll fill you in on it,” and there’s your cue.”

Sit down with your dad too and say this needs to happen. Record it, if you want. Say, “Oma, I don’t know if you know this or not, but I have a publication on death. I’ve done interviews on it, and I want to practice on you. I want to ask you these questions. Are you ok if I record them?” How amazing is that not even to have for your family but to have after.

HS: It’s funny because I have actually told her, at least in little bits, and she’s one of the only people who hasn’t immediately come back with, “That’s kind of morbid, are you sure you’re ok?” She was like, “That’s awesome. People need to know about this.”

LG: Then you have an easy candidate. I’m willing to wager that most eighty-year-olds are probably ok to talk about death because they’re 80. Because not only are they hyper-aware of their own mortality, they have also experienced so much loss at that point. Everybody around them has likely been dying. The other thing that I’ve learned is that it’s usually everybody else’s discomfort that gets in the way. I’ve always known that my grandma is superstitious, and so I think her fear is that by talking about it, it would happen. It hasn’t yet, so you know that’s good [laughs]. I think it was so healing and so healthy to talk with her.

I’m willing to wager that most eighty-year-olds are probably ok to talk about death because they’re 80. Because not only are they hyper-aware of their own mortality, they have also experienced so much loss at that point. Everybody around them has likely been dying.

HS: Yeah, it makes a lot of sense. Someone with more life experience has had to confront mortality more than I have at the beginning of my life. So, of course, I’m the one thinking, “Oh, it’s a touchy subject.”

LG: Exactly.

HS: This is kind of funny to admit, but I haven’t done any of the practical stuff around death. That’s one of the things hospice training tells you to do. At any point in your life something can happen to you, so you should have your living will and your healthcare directives completed. Where do I go to do that?

LG: You know, there are so many places. There are websites that walk you through it — The Conversation Project, or Death over Dinner. Everywhere has different requirements about what you have to do to put your documents into effect. I know up here all that it needs is to be signed, dated and witnessed. But having a document, while very good, is useless without a conversation.

Having been a social worker with ICU, I’ve had so many families bringing me power of attorney documents that talk about some advance healthcare directives. They don’t realize that now I need them to explain it to me. I need a voice in there because this is all now interpretation. We don’t interpret this document. You do. We’re not gonna take this and say, “Oh, Mrs. Smith meant this.” We’re still coming to you to say, “What does she want for life-saving measures? What is her code status? When she says, “Do not resuscitate,” does that mean no antibiotics and chest compressions, what about intubation?” The looks on the families faces are like, “No, but we have this document for you.” And we’re like, “Uh huh, but there’s no voice.” That’s one thing I tell people, do the documents, but then you gotta talk about them. Because if you have the conversation you can say, “We did talk about it. No she wouldn’t want this.”

A great place to start with friends and family is, “Right now in your life, what does quality of life mean to you?” For some people, living as a quadriplegic or paraplegic is great because there are so many advances now, it’s a no-brainer. But for some, that’s not ok. For some people, living on a ventilator in a long-term care facility at a young age is not ok with them. These are some of the options that it comes down to. The frustrating part is that there is a lot medical jargon. That’s why it helps to just kind of talk about what is quality of life, beyond just, “I don’t want to be a burden on my family.” That’s not fair because that’s putting it on your family. What does that mean? Are you ok as long as you can sit outside? Whether that’s you walking yourself or wheeling yourself. As long as your mental faculties are there, that’s ok with you? Beyond a certain age, there are statistics on how chest compressions can affect someone. A lot of good doctors will have those conversations: “What kind of life would she live? What would be important for her? What would she like to go back and do?” When you’ve talked about it, you can say, “I’ll never forget the time that she said this.” That provides a lot of insight.

HS: I’ve learned more and more the different types of DNR, just like you were saying, antibiotics, chest compressions, intubations — they are all different levels of invasive. We think of a DNR as a one stop shop even though it isn’t.

LG: And that’s our, no pun intended, but that’s also our fatal flaw. I’ve worked long-term care. I’ve seen the impact when our frail elderly receive chest compressions and also the impact on the paramedic who had to administer them. There’s trauma. Again, if that’s what the person wants, that’s ok. We have autonomy. We have the right to make that decision. I just want people to make an informed decision.

I’ve seen the impact when our frail elderly receive chest compressions and also the impact on the paramedic who had to administer them. There’s trauma.

HS: Was there a moment when you realized your own mortality?

LG: Fortunately, I can honestly say, “No,” in the sense that I’ve never had any of those moments where I had my life flash before my eyes. When I worked as a social worker in the ICU and had a lot of young traumas come in was when I had that moment of, “I could actually put myself in their shoes. That could happen to me. That could happen to anyone.” You could be in a freak car accident, or fall off a horse, or another trauma. Those are a compilation of examples from working in that environment. Every day I was faced with my mortality. Working in a trauma center you see it’s just wrong-place-at-the-wrong-time for some people. You’re not safe from accidents unless you want to live in your house in a bubble. I don’t want to do that because that’s not living.

Working in a trauma center you see it’s just wrong-place-at-the-wrong-time for some people. You’re not safe from accidents unless you want to live in your house in a bubble. I don’t want to do that because that’s not living.

HS: Did you choose to work in the trauma center?

LG: Yes I did. I applied to work in the ER and ICU as a social worker.

HS: Were there any major lessons learned from being in that environment?

LG: Oh my gosh, so many. I wrote a paper for my masters when I was working there called “Patient Death, Professional Grief” and I did an interview with a bunch of my colleagues, and it was a qualitative research paper. Again and again what came up was how trauma work is a reminder of how life is so short and how quickly things can change. I learned how important it is to talk about it.

It’s so cliché, but do not take relationships for granted. It became harder and harder to hang up the phone or end things on a bad note. I made a conscious decision to never end things on a bad note because I didn’t want to ever have that be the last conversation I had. I hear that from so many people who said about the last conversation they had, “If I’d known, that’s not what would have been.” We’re in control. When we’re with people, we can be present with people. We need to say what we need to say. We can’t say “Oh, I’ll have that conversation later. I can say that another day.” We can’t miss that boat for love over fear. It’s about embracing love.

Also, self-care is so important, Hannah, it’s so important. Whether you’re talking to people, going out with friends, going on a run. I don’t care who you are, working in those environments affects you. I pride myself on doing a good job of not taking everything home with me, but there are some cases that I hold very near and dear to me. They have changed me. I know when I see certain families affected, or see loss that has happened, is when I need to self-care.

You have to respect privacy and protection — you never talk about specifics that identify people, but you need to talk, and you need to share. If you’re in a workplace where that’s absolutely a no-no, you need to get together with a group of colleagues.

If you’re in a profession that interacts with people, you get impacted. We’re humans, we can’t turn it off.

I made a conscious decision to never end things on a bad note because I didn’t want to ever have that be the last conversation I had.

HS: How do you deal with HIPPA and confidentiality? Not only do you have it in the death environment (which I’ll have to deal with when I start doing hospice volunteer work) but as a therapist you, rightfully, can’t talk about any of your patients.

LG: We talk about how we feel. I don’t think that we need to say, “Patient N came in and presented these things, and this happened and the family came in.” We need to start doing a better job of being in touch with how we’re feeling. It’s about coming home and saying, “My whole world blew up today at work.” Or, “When I was sitting with my patient (or my client) today, they were talking about these things and I felt this. It made me think about my own life and this, this, and this are the reasons why.” We can share with people because it’s not the patient’s story specifically that impacts us, as much as how we feel.

If it’s something we’ve physically seen, then we need to go to our boss and say, “I need to talk about this, can you recommend the best way that I can?” In Canada we have a lot of places that will place you in programs where you can talk with a counselor, but you can even talk with a colleague, as colleagues are all bound by the same code of ethics. I know a lot of hospice groups that have volunteer support groups for that reason. You’re not trading stories like, “You wouldn’t believe what Edna did today!” That’s not it at all. It’s like, “I had a really hard time today with my client.” There’s a way we can talk about things and not identify people — we have to be cognizant of that.

For me, I’m in a small city. I’m not going to go home to my partner and say, “A major trauma came in today and four people were killed and I had the one living person, etc. etc.” Because guess what, that’s all over the news. They’ll know exactly who that is. But if I say, “I had a pretty severe trauma today, and this is how it impacted me,” then I’m fine because I’m talking about myself.

HS: We’re at the end of our hour and I have a question that I’m asking everyone. Answer at whatever level of detail you’d like. What do you want your funeral to be like?

LG: I’m torn because I’m a brunch lover. Part of me wants it to be a big brunch — everyone wakes up, has mimosas and really great food, then it can go all day. I don’t want people to dread it all day. It’s not like a wedding where you wake up excited to get there. You wake up and it’s like, “I’ve got to get the egg salad sandwiches made. I’ve gotta get to the funeral.” So I think it will either be a brunch that continues all day long or a party in the evening. A big ol’ potluck. I love community, family, friends, and relationships, which is why I’d want it to be a potluck.


Photo by Ross Dance Photography. Lisa is a social worker based in Saskatoon, Saskatchewan, Canada. Besides her private practice she also facilitates Death Cafés and has just started a death themed book club, calledEnd of Life Book Club YXE. If, like me, you want to follow along with what the book club is reading but don’t live in Saskatoon, you can follow Lisa on Instagram where she posts the book selections. Make sure to checkout Lisa’s website and TEDx talk.

Living While Dying— An Interview with Kayla Jones

Interview with Kayla Jones. Insights gained while living with cancer for a decade. 

Kayla climbed Machu Picchu two weeks after being cured from cancer. Original photo by Bill Damon.

Kayla climbed Machu Picchu two weeks after being cured from cancer. Original photo by Bill Damon.

Kayla Jones lived with soft tissue sarcoma for 10 years. Only when she was told she had no options left did she find a cure— in Lima, Peru. Kayla is a mom and a motivational speaker who spoke for the American Cancer Society in 2007. Between 2007 and 2009 she volunteered to comfort dying hospice patients by doing 13th-hour work. Now she is a mountain climber as well. What follows are her insights on cancer, death, and life— without further ado an edited interview with Kayla Jones:

HS: How did you find out you had cancer?

KJ: It was six weeks after I had had my second child. I was driving on the interstate and I looked down and I was hemorrhaging. I went straight to the doctor's office. I pulled over to a hospital and went to the ER. They said, “You’re pregnant,” and I said, “There’s no fucking way I’m pregnant.” I had just had a baby six weeks ago and my tubes tied.

HS: There’s no way you were pregnant.

KJ: No, there is no way I’m fucking pregnant. You also have to imagine, I’m 21 years old, 21 or 22. I was young. They came back and said, “You’re definitely preggo.” My test came back positive for pregnancy and I went in for a D&C. It all happened so quickly that nobody got called. I came to after my D&C to six doctors around a recovery bed. They said, “Unfortunately you weren’t pregnant.”

HS: You’re like, “Uh what does that mean?”

KJ: Right? I was like, “Yeah, I know I’m not pregnant,” and they said, “You have a very large tumor in your uterus.” It had attached on the other side of my placenta. I don’t know how long it had been there, but it caused my body to continue thinking I was pregnant after I had given birth. My body kept feeding this tumor until it realized it wasn’t a baby. That’s how I found out. The immediate response was, “Well you have uterine cancer.”

HS: Was that not true then? Was it not uterine cancer?

KJ: No it wasn’t. They went in and burned out my uterus. I went back and spent three months thinking, “I’m cancer free.” Then I started having all of these other symptoms. I was tired. I still didn’t feel good. I was experiencing massive emotional mood swings and headaches. I went in for a PET scan and they found, oh I think it was 28 tumors spread throughout my body. The doctors here had no idea what they were looking at, so I ended up being sent to the Mayo Clinic. At this point , I have a 4-month-old daughter and a 21-month-old daughter, but I go. I get down there and it still takes another five weeks to get the diagnosis of soft tissue sarcoma. That was the moment my life changed. Not the moment I thought I had cancer, but the moment they told me I had cancer that didn’t go away.

That was the moment my life changed. Not the moment I thought I had cancer, but the moment they told me I had cancer that didn’t go away.

HS: Wow. What was the mortality rate you were told?

KJ: They gave me three years to start. I went on hospice twice in 10 years with a prognosis of anywhere between three to six months left. But then I would end up in a new trial. I did three trials during 10 years, two of which had really good success.

HS: How did you existentially deal with finding out you had cancer?

KJ: I think it was a slow process, a really slow process. At the beginning I said, “No, I’m going to fight this. There’s no possible way I’m going to die of this. Death would be horrible. I’ll do anything it takes.” That slowly became, “Oh, I’m going to die, what does that look like? Is there a way to cheat death?” There was a long period of how do I cheat death and then there was longer period of, “How do I commit suicide and have no-one know that I have committed suicide?”

The honest answer is I had done mushrooms after I was diagnosed. I kind of went on a life rampage. I went to Burning Man and I started going to music festivals. I was sitting on mushrooms in the middle of Moab and I had this understanding that cancer didn’t have to be a bad thing. I had all the time in the world and I could choose to use to live differently. There was an immediate shift in how I looked at myself. It took an eighth of mushrooms and a group of hippies calling me a goddess. You know, “You are a goddess. You are a woman.” I can remember thinking to myself, “These people are fucking nuts,” and then there was this additional reality where they had a point. You do control your life. I can’t control when I die, but I can control every moment while I’m alive. There were definitely cycles of: how do I cheat this, how do I get around this, oh this is what’s happening, I’ll ignore it, let me put it in a box. Then a moment of, “If I’m going to die, I’m going to do it beautifully.”

In the beginning, it wasn’t self-driven, it was this desire for people to see me a certain way— as not the dying person, as not the grumpy person. I think the original need was for it not to take over, but that morphed pretty quickly into fake it till you make it. Eventually, that became how I was living. Every day I lived it, it was that much more clear that it felt good.

The hardest part of cancer was how people are drawn to pain. It was by far the hardest thing for me. I didn’t share my story actively with friends and family because it seemed like when I was in the most pain, more people wanted to be around it. They didn’t want to be around the joy, they were drawn to the depressing side of it. It was really hard for me to understand why people were drawn to the pain.

HS: Do you think you have gained any understanding about why that might be?

KJ: No, I haven’t. I think that American society is very intrigued with death because it’s not spoken about. Maybe they weren’t drawn to the pain but to the experience because it’s so taboo. Maybe I gained some insight but it definitely never felt good.

HS: How did you get through the darkest moments.

KJ: I think realizing it was going to go one of two ways — either it had to get better or it was going to end. Either of those options was better than the option of staying where I was. In those dark moments , death would have been a relief. Unfortunately, I’m not a religious person at all. I don’t believe in God. I don’t believe in heaven. The closest thing to religion I’ve ever had has been this belief that you do have a soul. I’ve watched enough people die to know something happens at death. There is definitely something that happens. There is a feeling, a complete shift in a room when someone dies.

It was going to go one of two ways — either it had to get better or it was going to end.

During my sickness, I worked doing what’s called thirteenth-hour. You sit with people who are dying who have no one to sit with them. I think I sat with about 20 people that were passing. It was a huge benefit to me to sit with them because I realized something does happen at death. I don’t know what that is, and I don’t have any desire to know what it is, to be completely honest. But death would have been a relief in my darkest moments and I watched it be a relief for other people. I watched people accept it. Through my darkest hours, I knew either I was going to get that relief or it was going to be better.

HS: Why did you start 13th-hour work?

KJ: I wanted to see what death looked like. I wanted to have a visual. I had never seen someone die. The closest thing to death I had ever seen had been my grandma’s funeral. I know I went to see her before she died, but I don’t really remember it — other than she was old and wrinkly and on oxygen. At her funeral, my creepy aunt pulled all the kids over to the casket and was like, “You need to come over here.” She opened the bottom of the casket and said, “I just wanted you to see that grandma still has feet.” Because of this, I used to think they cut corpses in half.

H: Oh my god.

KJ: Yeah, it was horrifying. And it stuck with me. The only other experience with death that I had was, I had a boyfriend commit suicide. I found him dead when I was 17.

The two experiences I had with death were 1) really strange, and 2) horrifically tragic. I thought I needed experiences where death didn’t feel that way. That is what took me to 13th-hour watch — to hopefully see death be peaceful. And it was 90% of the time. Plus, I learned to read aloud. I was a shitty reader. I didn’t read aloud very well. I was very anxious about it, but that taught me to read aloud, which I’m very thankful for.

HS: Yeah, that’s a very good mom skill.

KJ: Yeah, right!

HS: Had you thought your own death before the diagnosis?

KJ: Oh god no, I thought I was invincible.

HS: You had never had that moment of, “Oh shit I’m going to die,” before you were diagnosed?

KJ: No. There were moments of, “What would happen if I got into a car wreck?” I definitely hadn’t given thorough consideration to what death meant, other than maybe that it was depressing.

HS: Everyone talks about cancer like a battle or a fight, was that your relationship with cancer also?

KJ: No not at all. My relationship with cancer was definitely more of a journey. Cancer shaped my life. I think it changed who I was and how I viewed the world. It was a benefit. I have so much gratitude to cancer. It taught me an exponential amount about the realities of life that I could have never gotten somewhere else.

HS: Like what?

KJ: Like life is built on moments, and you have a choice every day to wake up and say, “This moment is mine, this day is mine.” Things don’t happen to me, I create things. I have the power to change my life in a day. I can change my attitude. I can change what I do for a living. I can change where I live, how I function, and how I treat people. It’s all a choice. I was a very entitled young person when this came into my life. I know that if I met myself 10 years ago, the person I am today I would have no respect for the person I was pre-cancer. I would have pity for that person.

Life is built on moments, and you have a choice every day to wake up and say, “This moment is mine, this day is mine.”

HS: How come?

KJ: Because I was a victim of life. I think 90% of the world is a victim of their own lives without even realizing it and it’s sad.

HS: People feel trapped and like they can’t do anything about it. Is that what you mean?

KJ: Or that they have no control. Or that they let everything in their lives happen to them without taking any responsibility. The reality is you can change anything. Even while I was dying I had a choice to live, instead of live my life as dying.

HS: Do you feel like you’ve been able to transfer everything you’ve learned to your daughters?

KJ: Yes. Cancer changed the way I parented. I’m probably the most brutally honest parent ever. People are always like, “Oh my God you cuss around your kids?” You do this, you do that. I’m like, “Yeah, they know they can’t leave the house and cuss but this is the reality of how I am.” There’s a huge thing at my house that if your attitude sucks you should take it somewhere else because I shouldn’t have to deal with it. Or you should change your attitude and come have a good time. You can go mourn, or you can be angry — you want to yell and scream, great, yell and scream but don’t let it take over. It changed my parenting enough, and it changed me enough that it ended two relationships. Mostly not because of the cancer, but because of how much I grew through those experiences, what my expectations were of my surroundings, how I wanted to live, and how I wanted to raise my kids.

HS: What was the conversation about cancer like with your kids?

KJ: I think it came in little chunks. I had gone into proton radiation, which was the most successful up until this treatment. At the time I thought it was completely new only to figure out it’s been around for like 30 years, it just wasn’t FDA approved yet. I was also doing brain radiation. So we definitely had conversations about “Why does mommy have seizures? What does this mean?” It was still pretty light. Then as soon as proton radiation happened, we had a massive comeback. I came out of hospice within four weeks. They had shrunk my brain tumor enough that my symptoms had dissipated really quickly. I had been experiencing leg mobility issues, extreme seizures, and headaches. I was off hospice within a month of starting proton radiation. I started living life again I met someone new. I got married.

HS: How did you talk about your cancer with the guy that you met?

KJ: Oh that’s a funny story. I had joined Match and had been casually dating. At the time I was still actually seizing, so this was actually before proton radiation had really been successful. I had a really good friend who found this guy on Match. We were surfing Match, having wine, kind of laughing at these Match profiles, and he ran across somebody. He was like, “This is the guy for you.” I don’t even remember looking at the Match profile. My friend sent a wink or a like and that was it. I kind of remember him saying, “Yeah sushifan772,” or whatever.

A few days go by, maybe even a week goes by, and I get this email in my Matchbox that’s like, “Nice chucks,” because there was a picture of me in Chuck Taylors. We emailed for a month. I was traveling. I was still speaking for American Cancer Society at rallies and at corporate events, but I hadn’t mentioned any of that. All I said was that I was a motivational speaker. We eventually met at this really nice restaurant. We go in and sit down. I think I made it through two glasses of wine and most of dinner when I said, “Before this date goes any further, you should probably know I have stage four cancer and I’m dying.” I remember gulping the rest of the glass of wine and he just kind of sat there. I remember we both started laughing almost hysterically and he said, “Okay, well do you want to go shoot some pool?”

I think I made it through two glasses of wine and most of dinner when I said, “Before this date goes any further, you should probably know I have stage four cancer and I’m dying.”

HS: [laughs]

KJ: I was like, “Okay yeah, let’s do that,” and we did. We left the restaurant and went across the street and shot pool until two o’clock in the morning. It never really came up again. I don’t remember having a serious conversation about it for over a year.

HS: Why did you end up having the serious conversation?

KJ: When we were getting ready to get married, I had asked to put together a prenup in order to protect his assets so that if I died there wouldn’t be a way to go after him for medical debt. I remember there being a very serious conversation about what I’d want to happen, how my will was set up, the realities of what was actually going to happen.

HS: What was it like right before you went to Peru? You had been told there was nothing left…

KJ: I had started to go to proton radiation again in June. The brain tumor came back, I had an intestinal tumor growing, and my spinal tumor had morphed the way it was growing. Before it was this solid mass. Out of nowhere, it became something that looked like an octopus— wrapping itself around my C7 and my spine. They were telling me this could make me a quadriplegic at any time, this could mean I’m not going to walk.

They were shooting it with radiation. I went in in June and then I went in July and then I went in August and in September. I was going to Seattle, and La Jolla and taking what the nursing staff calls, “death appointments.” I was pretty much on call. If somebody died during their treatment pattern I would get a call and I had to be there in two days, or the next day because the proton radiation centers were booked out seven months. When somebody else’s treatment pattern was over they already had someone else coming in. You were on death watch, hoping, totally sickly hoping, someone would die so you could have an appointment.

You were on death watch, hoping, totally sickly hoping, someone would die so you could have an appointment.

I think I went down October 2nd and I got back on the 5th. I went in for a scan about three weeks later and I had absolutely no change. My doctor of 10 years called and said, “We have a problem. This isn’t doing it. You know your brain tumor is inoperable. Your choice is to go back on hospice and wait this out.” I just kind of refused, I flat out refused hospice. I said, “I’m not doing that. Don’t order that. Don’t. If this is the end I’m going to do it without hospice until I absolutely can’t. You’re not going to order it before I’m ready.”

In October the word came in that there was really nothing left to do, and of course immediately I went off the deep end. I picked up another pack of cigarettes and had as much alcohol as humanly possible and went that road for a few weeks. I left my second husband. I definitely have a reoccurring pattern of, “Shit’s getting bad, let’s revamp. I’m not happy. I want to live for the day. Time to move forward.”

My husband hadn’t come to any of the treatments because of his work schedule. Instead a good friend of ours had been going with me. At that point when everything went south, he had been to Mexico to have his daughter treated for a growth issue. She was missing growth hormones. He said, “Let’s look and see what’s out there. There’s definitely treatment options out there that we have no visibility into from the States.” And I can remember thinking, “That’s fucking bullshit.” We live in America. America is the land of everything, right? How could it even be remotely possible that a treatment could be elsewhere— that anything that could possible help me could be elsewhere, other then maybe coffee enemas and seaweed. That was my understanding of alternative therapies outside the United States. You’re going to give me 900 coffee enemas and make me eat seaweed and take wheatgrass and I’m never going to have meat or alcohol or anything ever again.

HS: You knew the fads weren’t where it was at and that’s what you were expecting from places outside of the U.S.?

KJ: Exactly. Luckily, my personal doctor said, “I know of a trial called immunity therapy. It is a modified form of HIV virus they are using to fight certain types of cancer.” I started googling and I could only find one trial. It was in very early stages, but it implied that this mutation of the AIDS virus had been around since the mid 80s. They had mutated the virus in hopes of curing AIDS, and while they were testing it to cure AIDS it cured blood cancer.

HS: That’s pretty crazy.

KJ: But it was all incognito Hannah. There was no way to find out more information. I had called this one trial. I was down their throat, and they said, “You’re not eligible. You don’t have one of these eligible cancers.” I was thinking, “Where where has this been since 1988? Where did this go?” The digging started and it was insane— both the reality of what’s being used outside of the United States and how hard it was to find information.

HS: But you finally found a place that did immunity therapy in Peru.

KJ: Yes, but I couldn’t go right away because in order to get approved there was a lot of testing. I had to give blood, get it shipped it down there. Outside of the U.S., they prove treatment is going to work on you before they give it to you. So it’s not like, “Oh well we’re just going to put chemo in your body and see how your body reacts.” They said, “We’re going to take tumor tissue, we’re going to inject it, and if you have above this percentage of gain we will give you this drug.”

HS: That seems pretty smart.

KJ: It seems really smart to me too. I was like, “You’re telling me I’m going to know I’m going to have success before I go and spend however much on treatment?”

When I walked into the facility in Peru, I was met by my doctor in the waiting room. I didn’t say things to 10 people. I didn’t call in and say a story, then say a story to a nurse and then to a PA and then see a doctor for five minutes. My doctor was waiting in the waiting room for me. He said, “Hey Kayla, you ready?” He spent two hours with me. He had a scan done, and stood with me and looked at the scan in the same appointment— “Here’s your scan.” He put it up. “Let me tell you what we’re looking at.”

HS: That’s amazing, and also kind of devastating to think it’s not like that here. So you knew the treatment was going to work?

KJ: I knew the science worked. Mentally, I had not even begun to process that I could come home cancer free. I think there was too much doubt.

HS: What did you think was realistic?

KJ: I don’t know that I even contemplated what was realistic. I knew I didn’t have a choice, and it had come together so incredibly magically. I had an anonymous donor that called Peru and paid for it. I would never have had the money to pay for it. I still don’t know the exact cost because the anonymous donor wouldn’t allow the facility to release it. There were enough people I was down there with to guess it was over a hundred thousand dollars. I would have had no way to pay. That would have been leveraging my entire world to get down there for something I wasn’t sure was going to work.

HS: But it did work. Do you feel any shifts from being cancer free?

While I had cancer I wanted to say, “This all doesn’t have to be bad, dying is kind of magical.” This is why I became a speaker for the American Cancer Society, to counteract the stories being told that were only about pain.

HS: Death is kind of magical— it is unknown and there are so many possible outcomes.

KJ: It’s endless. Every time you talk to people who have had life experience that brought them close to death, you hear about how being close to death can bring you an abundance of knowledge and of self acceptance. One of the biggest things I took away from having cancer was that I got the chance to know I was dying and got the reality check that I was just as likely to die from cancer as from getting hit by a bus. Now that I’m running around cancer free, it’s not like the feeling of dying has left. We’re impermanent. Why are we treating ourselves like we should be invincible?

I got the chance to know I was dying and got the reality check that I was just as likely to die from cancer as from getting hit by a bus.

The shifts I feel are different than I thought they would be. I thought I would have all this gratitude about not dying, only to realize what I just said: we’re impermanent creatures, tomorrow it’s the bus. The biggest thing is physical relief. I hiked 18 miles on Saturday up a 12,000-foot cliff face. I never would have pushed my body to do these things before cancer, let alone think I was going to be capable after cancer. That’s been huge. I did it in a day. We got up at five a.m. and walked up a hill. We started at 3200 feet and ended at 11400 feet because we couldn’t make it to the peak, but it was a class five climb. I’ve always lived on the edge and I’ve always done things in extreme, and to have the ability to push my body to an extreme is incredible.

HS: Do you have any plans for that?

KJ: Oh yeah. Right now I’m trying to make it into the best shape I’ve ever been in. I have a goal to see a six pack of abs which I haven’t seen since before I had my first child at 18.

One thing my doctor in Peru said when I left was, “Science just saved your life and you have a choice to treat your body in a way where cancer won’t come back.” The cure was only a cure for the cancer I had. If I smoke cigarettes till I have lung cancer, I’m not going to be cured of lung cancer. If I eat crap for the next decade get obese and have liver failure, I won’t be cured of liver failure. These are all things I can control so I’m going to strive to do that. I want to climb the nine highest peaks of Idaho. I might want to do a bikini competition. There are all these things I think my body could have done, even with the cancer, that I didn’t push my body to do because there was this stigma of, “you can’t do it,” in my head. I’m sure my body really couldn’t have done some of what I’m doing now. I don’t think I could have hiked 18 miles six months ago. I don’t think I could have hiked Machu Picchu two weeks before I did. I think that’s the biggest change.

The biggest realization is that being cured didn’t change how I felt about life. I had a lot of fear… this is such an odd thing to tell you, but the idea of losing cancer, who had been my biggest teacher, was terrifying. I had all this fear about letting go of something that had shaped me so fundamentally. What if I stopped respecting my life? What if I didn’t make choices based on living? We’re taught to be invincible. I was terrified of becoming one of those people I just spent a decade trying to help realize their impermanence and learn to make choices to fully live. Making the choice to let go of cancer was probably the hardest thing I have ever done.

The idea of losing cancer, who had been my biggest teacher, was terrifying.

HS: How did you do it? Mentally what did you go through to let go of it?

KJ: I think the largest part was trusting that I didn’t need the journey anymore, that I had learned from cancer, and that I was capable of taking the lessons with me. But it took a lot of time. The night before we went to Peru, my 20 best friends came over. I stood in the kitchen bawling and said, “I’m not sure I’m ready. This has been such an amazing journey. It brought all of these people into my life and so much more. It taught me so much.” This woman who worked hospice, who has worked with dying people forever, magical woman, looked at me and said, “You’re going to have more journeys. You’re going to watch your children grow old. You’re going to continue to inspire people. You’re going to have a story of hope not a story of death. You get to make this journey even more than it is.” It was really eye opening.

And I went to Peru to the jungle and did ayahuasca. I had this insane ayahuasca trip. I have to tell you I was really anti drugs growing up. I didn’t smoke. I didn’t drink. I didn’t smoke pot because it’s dangerous. I was completely a stick in the mud. I go down there and I do ayahuasca. I had gone into it expecting a visual experience only to end up in my own head. My first visual wasn’t even a visual. My eyes were closed with all the lights off and I was with eight of me that were all talking at once. I was like, “Oh fuck,” but at some point along my mental journey, I saw a woman. This woman was beautiful. She identified herself as my cancer and asked me to let her go. She said, “You called me here to teach you and I taught you all you needed to learn. It’s time for me to go elsewhere, teach someone else. Don’t look for me anymore.” There was a huge embrace in my head. I was like, “oh my God! Right! I don’t need this anymore.”

I saw a woman. This woman was beautiful. She identified herself as my cancer and asked me to let her go. She said, “You called me here to teach you and I taught you all you needed to learn. It’s time for me to go elsewhere, teach someone else. Don’t look for me anymore.”

A lot of other stuff came to reality there. I decided during that ayahuasca trip that I needed a divorce and I needed to be more connected to my family that I had created distance with over the years. And to give myself a chance.

Both of my major shifts came out of drug use, which I hate to admit, but they totally did. Maybe it’s because you’re in an altered state that you can listen to yourself. Those were huge monumental shifts in my reality. Saying goodbye, and having cancer be so beautiful in my brain. When people talk about cancer, and put a face on it, it is usually a troll coming to shuffle sickness into them.

HS: Yeah and you see the smoking commercials with the people with emphysema and all the wires going in and out of them.

KJ: Yeah! It’s always this horrible thing. No wonder people are like, “I’m going to fight forever.” It’s ugly and nasty. I got to have an experience where it didn’t feel ugly and nasty. It felt beautiful and saying goodbye was heartbreaking to me. Letting go of something — I’m sure it’s how it feels when you walk your kid down the aisle. You’re letting go of this piece of you. The weird thing was, in the vision she was expressing that she was going to do this for someone else. In any other reality I would have thought, “Oh my God! Please don’t do this to someone else! This is horrible. You’re going to infect someone else?” But the reality is that this whole experience was such a gift— to connect with other dying people, to be a friend to a child who is scared, to look at someone who is completely healthy and be able to say, “You have everything and you’re dying too, you just don’t know it.” I mean, pretty big stuff.

To look at someone who is completely healthy and be able to say, “You have everything and you’re dying too, you just don’t know it.”

HS: I’m asking everyone I interview what their funeral would be like, so do you know what you’d want your funeral to be like?

KJ: Oh yeah, I can totally talk about my funeral start to finish. The thing is that there is no funeral. No funeral in the sense of funeral. I say let people mourn and gather as they’re going to gather. Then party. Hire a band, throw a barbecue. Let people share stories they want to share. Play music that is not about death. And really embrace my life. Show my death how I lived, not how I died.

Take my ashes, go to Burning Man, and send them up with the temple. Take some of my ashes and put them in a necklace and carry me with you. Show me your experiences. Take me where I didn’t get to go. Don’t put everyone in a room and say horribly sad things about how I wasn’t going to get to see my children grow old. Yeah, Let’s just not.

That’s what my funeral would look like. Just go party, please party.