Colonial Nelson House

Fourth of July is a wildly celebrated holiday when we all get together to drink and be merry. Hot dogs, burgers and coolers of Budweiser have become iconic staples of Fourth of July festivities. But as time moves further and further away from the Revolutionary War, many have forgotten that there is a lengthy death toll associated with one of our most feted holidays. Despite 241 years having passed, the dead continue to influence our lives. They are part of the reason we are free.

In February of 1775, Parliament declared Massachusetts in a state of rebellion. Its thirteen colonies had been stirring for some time, buzzing with the desire to become independent from Great Britain. The beginning of this battle for freedom forced many of these men to come to terms with the idea that they were marching gallantly toward death’s door; the only thing returning home from battle would be their legacy.

The work of dead Revolutionary War soldiers does not only lie in gaining independence from Great Britain. Casualties from both sides of the war continue to remind us of their presence in mystical ways. People who live near the hallowed grounds where bloody battles played out often claim the dead still walk among them— that the violence surrounding their death will not allow them to rest. In Yorktown, Virginia one such location has been said to buzz with activity. The Colonial Nelson House once served as a hospital for wounded British soldiers. The poor conditions, lack of proper medical care and the fact that the Nelson House was a constant target for American and French cannon fire, were not conducive to high survival rates. The death toll was high, and many believe the dead still inhabit this house. Currently serving as a museum, claims have been made that a man in a bloody red coat appears in the mirrors of the building. The grounds are supposed to be just as haunted; ghosts of red-coated soldiers are often seen on the full moon, fleeing spectral cannon fire. Whether you believe in a ghostly afterlife or not, the casualties of the Revolutionary War do not want to be forgotten.

Our unconscious disassociation with death, especially on holidays such as this, is understandable. We are conditioned from youth to avoid discussions of death— taught that engaging another in deathly conversation is disagreeable because it risks bringing on a certain sadness or negative feelings. No one wants to hang their head when they could be celebrating instead, particularly on a festive holiday like the Fourth of July, but taking even the smallest moment to contemplate the casualties of the Revolutionary War can help us remember why we celebrate in the first place. Even if it may be a little uncomfortable, contemplating death can let us live more profoundly and find greater appreciation for the things that we have— things we wouldn’t have if another hadn’t given their life. So when the hot dogs are on the grill and buns are being toasted, take a second to remember the fallen soldiers of the Revolutionary War.

Besides, Budweiser is pretty cheap. Pouring a little out for the dead isn’t really a huge loss.

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Burial, books and bones are the most important things to Krista Amira Calvo, aside from black coffee and fluffy felines. Pursuing her degree in physical anthropology and bioarchaeology, Krista spends most of her time buried in books about the dead. When she isn’t turning pages she is wielding an X-Acto knife and glue gun, making teeny tiny skeletons and other things of that nature. Krista is currently focusing her work on exploring the origins of Tibetan Sky Burial. Follow Krista on Instagram: @trowel_and_bone.

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 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.

A Slice of my Death Inspiration: Mass Graves, Morgue Photos, Body Farm, Right to Die, Crematory Lessons

Image from Capuchins’ Catacombs

Unearthing the Secrets of New York’s Mass Graves

Do you know where unclaimed bodies in New York City go? Do you know what happens to your body after it’s been used for science? Nina Bernstein reveals the history of Hart Island, NY, where corpses are ferried twice a week to get buried by paid prison inmates in mass graves.

About Dying

Photographer Cathrine Ertmann takes intimate portraits of the dead. InAbout Dying she documents what death looks like at a morgue.

Forensic Anthropology Center

Colloquially known as the Tennessee Body Farm, the center is dedicated to studying the decomposition of human corpses. Understanding how bodies decompose in different environments allows forensic anthropologists to aid law enforcement by better identifying unknown remains. HERE’s a mini documentary Vice did on the body farm.

My Right to Die

Kevin Drum shares the history of legalizing assisted suicide— also known as death with dignity, or euthanasia. He delves into the complexities of how naming the movement affects public opinion, and he discusses why minorities that are wary of the medical system (often rightly so), are generally against legalizing assisted suicide. He frames the whole article in his personal story of individual and family health issues.

Smoke Gets in Your Eyes

When Caitlin Doughty was eight she witnessed a little girl fall off the second story balcony at her local mall. The girl might have survived (we don’t know), but to eight-year-old Caitlin it felt like witnessing death. This led her to become a mortician so she could confront her fear of death brought on by this childhood trauma. In Smoke Gets in Your Eyes Caitlin demystifies death by sharing what most would consider gruesome details of corpses and cremation— get ready for detailed descriptions of body burning.

Photo Series: The Intersection of Mythology, Photography, and the Underworld.

Shrouded in full regalia, she prepares to go through the first gate.

About six months ago I did a death-themed photoshoot with my family friend, who is an amazing artist and a therapist. I was telling her about my early photographic exploration of #thebenefitsofcontemplatingdeath, and she immediately told me about this book she was reading. The book wasDescent to the Goddess by Sylvia Brinton Perera. It is about a Sumerian myth that is one of the oldest myths about the underworld. In the book Perera discusses the value of confronting death and assimilating our shadow selves. Well, I had been looking for a way to deepen the death photoshoots for awhile and this myth seemed like a perfect structure.

Here is a (very) simplified version of the myth: Inanna, the goddess of heaven and earth, decides to go visit her sister Ereshkigal, the goddess of the underworld. To get to her sister, Inanna has to pass through 7 gates. She has to remove one piece of her divine regalia at each gate, until she reaches Ereshkigal naked — without any markers of her identity. Here, naked and vulnerable, Inanna dies. It’s ok though, because some trusted minions appeal to the better nature of some other gods, and one of them revives Inanna. When Inanna comes back from the underworld it’s as though she’s gained a new aspect of herself.

I turned this myth into the basis of my descent shoots. During this experience, the model removes one layer of regalia every few minutes. At the end she is either nude or wearing a nude slip. This simulates the model losing her identity and becoming as vulnerable as one can be. Can you be more vulnerable then when you are facing death?

A few months after our initial conversation, I was able to do a descent shoot with my family friend. Check out the rest of the photos below:

Her first piece of regalia was removed as she passed through the first gate of the underworld. She has started the process of shedding her identity and becoming more vulnerable.

Through the second gate, and forces begin to pull apart your you-ness.

Through the third gate. If death strips you of everything does it make you one with everything too?

Through the fourth gate. Death is the ultimate letting go.

Through the fifth gate. One piece of regalia has been removed at each gate, destroying any indicators of identity.

Through the sixth gate. Almost at the foot of Ereshkigal’s throne.

Through the seventh gate. Bowing to death. Confronting our shadow.

Thank you for looking at this descent series. I’m excited to announce that I’ll be making descent shoots available by appointment September 2016. Stay tuned!

When I was little I was very concerned about my dad dying. Long story short — my mom took me to go see The Lion King in theaters when I was two and a half (#typicaldisney). So I told my dad I didn’t want him to die. His response? He told me that when he died I could take him to a taxidermist and prop his stuffed body up in my bedroom so he would always be around. (I maintain that this story encapsulates who my dad is better than any other anecdote, haha.) Over the years he has come up with other out their schemes about what to do with his body post-mortem. These include:

1. mounting his head on the wall with a motion sensor so that he can scream obscenities at people as they walk by (think a combination of the house elf heads at Grimmauld Place and those talking fish you see at manly meat restaurants or outdoor stores)
2. and rolling his body off the side of our beach path so that the carrion-consuming creatures can eat him.

(This last one I’m actually totally on board with, presuming we can do it legally.)

Talking about death with my mom came later when, at the ripe age of 10, I realized I was going to die. I could avoid thinking about death during the day when my mind was consumed with routine activities, but at night I couldn’t ignore my mortality. I was completely terrified. I would sleep in my mom’s bed and I remember talking to her about it a little bit. At that point in her life she was thoroughly atheist, and told me that life would just end— it would be blackness, nothingness. Not a comforting response, but looking back I appreciate the bravery with which she told me her beliefs and refused to skirt around the subject.

Most people are afraid of death (fear of death ranks right after fear of public speaking, as we’ve all heard by now), and as an adult who is probably uncomfortable with the whole death thing, I can’t imagine anything quite as unsettling as telling your child that they’re going to die. Ok, ok, maybe telling them about kidnapping, torture, rape and murder is up there too. Some horrors of living definitely seem scarier than death, at least to me. On a lighter note, the sex talk is probably up there on a lot of parents’ lists of most uncomfortable moments. Still, you get my point — the mortality convo = not the most fun. But my mom confronted it head on and I’m so grateful that she did.

To comfort me, she said that she thought that people get less scared of dying as they get older, and she reached out to one of our family friends who had been confronting similar existential realities. Basically, she asked our friend how long she’d been thinking about death. When the jury came back, the answer was something like, “forever,” or, “my whole life,” or, “I still think about it now.” Essentially, an answer that made me feel like I would never escape this scary relationship I had with my inevitable death. This TERRIFIED me. I was thinking “WTF, how am I going to deal with life if I’m stuck in this existential hell forever.” Ok, I was 10, so it probably wasn’t in those words, but you get the idea. I’m not sure what the turning point was, but I eventually stopped fixating on my death and found other things to worry about — boys, how to avoid being the most socially awkward person ever… you know, those sort of things.

The funny thing is that I’ve circled back 15 years later. I’m now choosing to think about death as much as I possibly can, and I am the happiest I’ve been in a while. Is death still scary? Sure, of course it is. I’m not sure I will ever be fearless toward dying. But does thinking about death make my life better? Abso-fucking-lutely.

So how did I go from death-terrified 10-year-old to death-obsessed 25-and-a-half-year-old? There was a turning point when I was 22 (I’ll get to that in a second), but there were indicators along the way. For instance, I’ve always been attracted to the darker aspects of life. Growing up I read about eating disorders, self-mutilation, and depression. I don’t know why that was, but I found these typically disturbing topics fascinating. I gobbled up books likeReviving Ophelia, Pledged, and Prozac Nation. Even my fictional entertainment was affected. A couple of my favorite movies were The Nightmare Before Christmas and Thirteen, and I loved books like Coraline andSabriel. I never thought much of these interests. I just wanted to watch and read what I enjoyed, and these were the movies and books I liked.

Then I turned 22 and had a breakdown when I returned to college after traveling for 3 months. For three years, I had been studying graphic design— the profession I had wanted to go into throughout high school. I was following the designated trajectory, doing everything I was supposed to… except I wasn’t fulfilled by my schoolwork. Not an uncommon experience, but I still felt very shaken. I stopped feeling motivated. I stopped wanting to do anything creative. It felt like a core part of my identity was gone, so I started looking for ways to feel better. Through that search I found a book called Nature and the Human Soul. In that book the author, Bill Plotkin, talks about a phase in human development where we have to confront mystery, the unknown, and darkness, in order to figure out what most fulfills us. How do we do this? One way he suggests is to confront death. Here’s a quote that sums up his thinking:

“The confrontation with death is an unrivaled perspective-enhancer. In the company of death, most desires of early adolescence fall away. What are the deepest longings that remain?”

— Bill Plotkin, Nature and the Human Soul

This is exactly what I wanted— to figure out what my deepest longings were. Heck, I didn’t even need that much. I just wanted to know what I still liked. At that moment I had no idea. So I signed up for volunteer training with Hospice SLO, and although there were timing issues that prevented me from volunteering after the training, a spark of inspiration had finally been ignited in me. What do I want to do before I die? What is it like to die? What happens after I die? These questions hint at one of the biggest mysteries: How are we even here right now?!

Besides the first question, there’s no way for me to know the answers until I die. I may never have an answer to the last question. I think the unknown is the X factor that keeps me intrigued though. For example, I have no clue what happens after death; I personally believe that it’s a mystery that we will never solve until we die, no matter how far science advances. Maybe it’s closed-minded of me. Maybe humans will have some scientific or spiritual (or something else) breakthrough that will tell us exactly what happens after we die. Even now there are tons of accounts of past life regressions recounted during therapy, tales of near-death experiences that seem to describe similar events, seemingly divine transmissions that offer detailed accounts of the afterlife, and staunch afterlife beliefs from many religions. There’s also the scientific understanding that no matter or energy is created or destroyed— what does that mean for consciousness? There are beliefs of reincarnation, soul relocation, reintegration, and abrupt endings— even stories of people living the same exact life repeatedly. Maybe someday one of these beliefs may be proven true. Until that point, though, I choose to believe that all of these possibilities are true. Or rather that any of them may be true. In other words, I choose to revel in the mystery.

And anyways how could I, one human in this huge universe (multiverse?), claim to know what happens after we die with absolute certainty? That seems so ridiculous to me. But of course, tons of other people claim to really know what the afterlife has in store for us. How can I begrudge them their belief, when in a sense I also believe what they believe. I just simultaneously believe what everyone else believes too. That’s the beauty and the scary part of the unknown, we can believe anything we want exists within it.

Even though I don’t want the answer, I am consumed by the mystery of death. I want to know what the staunch atheist and the devout believers think happens when we die. I want to know what the everyday person thinks about death. I want to know what bereavement counselors, hospice nurses, doctors, hunters, morticians, grave diggers, and others in death-related professions think of death. I just want to talk about death so I can enjoy the mystery instead of being filled with terror by the unknown.

Since I realized my interest in death, I have incorporated death contemplation into my life in many ways: going through hospice training, photographing wild animals that died on the beach, helping friends through the deaths of loved ones, and meditating on death. After doing this for awhile, I found that there were some side effects that came from thinking about death. Ok yes, more people became concerned for my mental health, and yes people constantly said, “isn’t that a little morbid?” But I found that there were a lot of people out there who wanted to be able to talk about death more openly. People have profound experiences around death, both beautiful and heartbreaking. The type of experiences that make you feel thoroughly human and alive. I also found that I was the kindest, most authentic version of myself when I remembered I could die at any moment.

So there you have it, those side effects are (some of) the benefits of contemplating death.

Without further ado, I present The Benefits of Contemplating Death. The BCDis a slightly-more-than-monthly online publication that will be coming out at every new moon (New York time). Fitting right? When the moon is hidden from us, and seemingly more dead than the floating hunk of rock normally is. This is the place I will combine my passion for photography, writing, and (durr) death. I will talk to a diverse range of people about death. I will talk to death professionals, spiritual leaders, the devout and the nonbelievers, and hunters and animal activists (animals die too!!). I will share death resources I come across — from logistical paperwork aids to young adult novels. I will share my experiences becoming a hospice volunteer (without violating HIPPA of course). And for all of my Insta followers out there (love you 😘) I will continue to share my descent shoots and death themed photographs.

Thank you for reading this. You made it to the end, congrats! Stay tuned for more. Next issue out on July 4th (talk about a death-filled day). See you then!

FAQs:

Q: So this death thing is kind of morbid right?
A: Here’s the definition of morbid:
mor·bid
ˈmôrbəd/
adjective

1. characterized by or appealing to an abnormal and unhealthy interest in disturbing and unpleasant subjects, especially death and disease.

I guess it comes down to whether my interest is unhealthy or not. I certainly don’t think so. Thinking about death has helped me live authentically, pursue my dreams, fear less, treat loved ones with more kindness, and be more empathetic in general. You however, might think my death contemplation is unhealthy, and thus morbid. That’s fine. Your opinion is your business.

Q: You’re not super depressed right?
A: Um, no. Actually the complete opposite. 3 years ago I was very depressed and thinking about death was a key player in making me feel vital again. When I confronted the impermanence of life, I realized how much beauty there was around me and how much I would miss when I was gone (that is, if I have the ability to miss things when I die). Thinking about death reminds me to cherish every moment, to love as much as I can, and to live life how I want to live it because this might be my only chance. The cheese factor is on point in this case.

Q: But you can’t live like you’re going to die tomorrow all the time, right? You have to make money and stuff.
A: I’m not proposing you live like you’re going to die tomorrow all the time. I’m proposing that you think about death more, talk about it more, and examine what you would do if you knew you were going to die in different time periods. This self reflection will hopefully let you see what’s most important to you, so you can focus more of your energy on what matters to you. None of this implies that you need to quit your job and travel the world or party constantly or anything else. Maybe you will realize that your job is unfulfilling and get a new job, but maybe you’ll recognize this discontent and decide to stay in your job anyways because it allows you to take care of your family, and that’s what is most important to you. Using your inevitable death as a guide for your actions does not necessitate irresponsibility.

(Are you over that line of questioning? I sure am. Let’s move on.)

Q: I want to reap the benefits of contemplating death. Are there ways for me to incorporate death contemplation into my everyday life?
A: Yes! So many ways. A big way is to become a volunteer at your local Hospice organization, or you can just go through training if you don’t feel ready to hang out with dying people (totally fair). Another way is to start having conversations with your loved ones about their end-of-life wishes. This may be hard but it’s great to clear this information up while everyone’s healthy so that if something does happen you don’t have the stress of guessing what they would want. Some more low key ways? Meditate on what you would do if you were going to die in 10 years, 5 years, 1 year, 1 month, 1 week, and a day. You might gain some interesting insights. You can also read death-themed books and blogs. One book I want to read, but haven’t yet, is Smoke Gets in Your Eyes by Caitlin Doughty. While you’re at it check out her blog and videos by googling The Order of the Good Death. Another blog: Confessions of a Funeral Director. Want a young adult novel? Try Sabriel.

Q: Thanks, but I’m really into what you’re doing! How can I be involved?
Stop (don’t stop)! You’re making me blush!

One easy way is to take picture that shares your interpretation of the benefits of contemplating death and post it on Instagram. Make sure mention @thebcd and tag #thebenefitsofcontemplatingdeath so I can see your perspective on death, and so others can benefit from your thoughts on death too. Plus you might get featured on The BCD Instagram page.

Other ways to get involved will be available very soon! I’m going to open up descent shoots to the public, start an interactive project, lead death discussions, and more. I’ll be redoing my website soon so you’ll be able to find out more there, but make sure to follow @TheBCD on Instagram to be the first to know.

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Oops, backwards stressed A.

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A few Chakra Nation Hoopers pics from a photoshoot I did with my Mama just before Christmas.

Check out my Mom's awesome blog HERE.

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Today was quite the day. I'm in the midst of a transition to a new place and am on a massive job hunt— it's exciting and nerve wracking all at once.

What made today different from the past few days, though, was the death of my Opa. He and I were never particularly close, but he lived at my Dad's house since I was eight. This meant that I saw him every weekend when I lived in Humboldt, and on all holidays since I've moved away. He has been a present figure in my life for quite some time. His death wasn't unexpected. He had been sick for years and, while I can't claim to empathize with having a chronic disease or with dying, I can only assume that this transition marked the end of a lot of physical and mental suffering he had been enduring. There are a couple moments growing up, listening to his stories and singing rounds around the dinner table, that brought me happiness and that I want to honor now.

I'm grateful for his life, and that it lead to my father's life and mine. I'm grateful that he is no longer in pain. I'm grateful that this provides me an opportunity to come together with my father's side of my family. I'm grateful that I have a phone and can call my Oma and my dad. I'm grateful for all of the love that has surrounded me and my family today.

Connection is a wonderful thing.

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Model cred to Bbbearrr.

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Inktober | Day 21

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Inktober | Day 20

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Inktober | Day “19”

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Inktober | Day “18”

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a dreamland transition

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Inktober | Day 17

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Inktober | Day 16

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Inktober | Day 15

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