Deciding to Stay Alive After Choosing a Palliative Care Route With Anorexia

July 2019.

It’s been a year.

It’s been a year of something. It was truly a light in a season of dark and broken places. A life-changing, heartbreaking, mind-blowing and lifesaving something.

On July 23, 2018, after very careful thought and consideration and many, many tears, I felt my brain just “was” and would never change. After eight months of intensive treatment for the umpteenth time. I was 32 years old, 18 years of which I had been tormented by my eating disorder, and nothing in my brain felt like it had shifted. I was weight-restored, but I still felt cemented in all the ways I didn’t want to be stuck. I couldn’t reason, rationalize or act in any sort of different way with food. It really felt time to face what “was.”

July 23 of last year was the day I decided, in true partnership with my doctor, that palliative care was the likely path I was going to walk down. Looking back, I was devastated and sad, but strangely at peace on this day. Leaving that session, I felt a sudden sense of urgency to work through my list of simple but meaningful things I wanted to do with the people I loved in the places that were most important to me. Above all, I just wanted to make it to Christmas. If I could just make it to Christmas, then I’d be ready to let go.

So, I started.

My “to-do” list was not Mount Everest, but I came to realize your true personal values will become extremely apparent when you’re facing end-of-life considerations. I had a beautiful time with my mother who was actually visiting me over the week I made this life-altering and life-ending decision. Telling her and my father was one of the most painful things I have ever done. We rode that emotional wave over her time in Denver (where I had relocated for treatment from New York City). We have a sort of kismet connection (whether we like it or not) and although we undoubtedly felt the feelings, separately and together, she also carried with her the experience of volunteering with hospice services in Toronto, Canada. She respected the work I had done, the pain I was in and the decision I inevitably made. I can’t express the amount of gratitude I had for this reaction and the gift of taking those painful first steps with someone holding my hand. Even if it was the last road we’d ever walk down, she wanted to walk with me.

I loved and lost so much during those initial weeks. The world became so much closer to my heart given the finality of what was. I tried to explain to the best of my ability where I stood on my palliative perspective to many close friends and family; and to be honest, it didn’t land most of the time. And if it did, some weren’t able to hold it. I’m not saddened by this now, and to be honest, I am glad they were able to protect themselves and their own hearts in whatever way that looked like. I’ll be truthful though, sometimes the silence felt too loud to bear.

I did start to understand everyone’s palliative journey looks different. I needed to start deciding what I was willing to accept, both medically and therapeutically. I kept my values and my “list” at the front of my mind and used those to guide me. If IV fluids or medication or a therapy session would help me make it to the next “thing” on my list, then I was game.

I knew I didn’t want to die at home in Toronto. I didn’t want to bring that sadness into my family’s house, even though it was not the childhood home I grew up in. I wanted to spend as much time with those I loved, but it just felt too heartbreaking to do that — both to them and for me. The Denver Hospice was incredible about answering my questions and quelling my fears about the final days. I wish everyone had a resource like this to comfort them in their darkest hours if needed.

I can’t say I wasn’t afraid. I was afraid of so many things. Afraid to suffer and afraid of the pain. Suffering and pain are the weirdest, purest things I think a human can experience and they also inform so much of our decision making. However, by the time September rolled around, I was neck-deep in both suffering and pain, unable to continue doing the things I wanted with the time I had left. I soon realized I would likely not make it to Christmas. I was told I might make it physically, but definitely with zero quality of life.

So, in early October, I decided to return to inpatient treatment in Colorado under the firm condition I would stay only until I was in a physical place to continue on with my list. One month, tops, and I would continue on my palliative path. Although my treatment team respected my decision, I was often reminded I should “entertain the idea of possibility,” and “allow the program to take me and give it one last go.” This made me so angry and sad and resentful. Didn’t these people know how much agony I was in? Did they not understand how painful it was to choose to pursue end-of-life care? Why were they doing this to me by bringing it up again?

It was one of the loneliest times of my life. Surrounded by so many people, but feeling so unheard. I think I needed it though. I needed time and space to face it, I needed time alone. I have always said I want to live and die with no regrets and here I was, sitting in a place with people inside and outside of treatment who were affording me another chance. I had absolutely zero hope, but I didn’t want to sit there at the end of my life and think I didn’t do everything I could and follow any opportunity I had to maybe turn the tides toward saving my own life. This was never about wanting to die after all.

Many people have asked me why I stayed and what shifted and all I can say is that I have come to know we all have pieces of ourselves. There are parts that are in pain and hurt, and parts of us that show up in this world in a more visible capacity.

I absolutely knew two things about myself to be true:

1) I was suffering, in mind, body and soul.
2) I was a daughter, sister, friend, aunt, advocate, helper and amateur healer.

So, knowing these two parts existed in my proverbial hands, I knew I would need to give up everything in my second truth to find peace in my first. After many agonizing nights, it became apparent I knew I was in pain, but the pain of giving up on all of those other relational parts of me — everything in my second truth — was too much. That part of me deserved I show up one last time.

So, I stayed and ate and felt and cried and ate again and felt again and cried a little bit more.

What was one month turned into four, and then insurance discontinued coverage on my treatment stay. I know so many people become angry, as I have as well, when their insurance “cuts,” but I was so at peace. Canada is an amazing country, but the United States is just ahead of the game in terms of eating disorder treatment. I am so privileged to have had access to some of the best clinicians in the world across my journey and I can’t help but think whether I would be here if I wasn’t afforded these opportunities. All I could do in that moment was lean into gratitude.

I also believe the universe sends us messages. My dear therapist once told me, “The universe will take care of you, it may not be how you initially want to be taken care of, but it’s going to be OK.” I walked out of the doors of treatment, probably a month or two earlier than intended, but I felt at peace and I knew that the universe would take care of me somehow. I didn’t know how, but I just knew it was going to be OK.

I wish I could say everything was puppies, sunshine, rainbows and smooth sailing after I was discharged from treatment, but it was not. I tanked. It was still an unexpected event, leaving early, and I struggled immensely. I know transitions are difficult for most people, but I am terrible with them — always have been, maybe always will be.

One thing I want people to know is that this is a cumulative disease. What used to take me a year, then six months, then three, then one to reach a very critical place medically, now only takes me days to reach. It makes me angry because I wish I had the rope to struggle, but it is also a gift because it’s my body telling me right away “Not OK, get back on track, we can’t do this anymore, get it together. XOXO, your Bod.” Gone are the months of bargaining and rationalizing with myself and others. I don’t have that time and space anymore, and quite honestly, the healthy part of me doesn’t want to exist in that realm either.

After I was discharged, my team and everyone who cared about me jumped in with suggestions on what should be next, where to go, who I should contact etc. I took a few days, but it finally just dawned on me that I knew the stuff, I had the information and what I needed to do was just eat the fucking food (I know this doesn’t seem like rocket science, but it was like the first landing on the moon to me). So, I opted to actually scale back support, strip it down to what was necessary, not layer in other professionals or another program and just eat, or ETFF (“Eat the Fucking Food” as my dearest friends would say time and time again).

So that’s what I did … I worked with an incredible outpatient team who helped me get back to a place of health and healing; and quite honestly, I went from the table to the couch, eating and then crying and feeling sorry for myself. I was reaching out and above all else, having the time and space to feel everything.

I sat down to dinner with my eating disorder. literally and figuratively. I faced it, I felt it, I fought it.

I came back to life in Denver, Colorado and everything else is just a bonus. Colorado often boasts it hosts 300 days of sunshine. If that is true, I want to thank this state for its 300 days of sunshine in all the ways it presented itself this past year.

Now for the next step and a next breath. I’m home … home to where I belong and home to everything that was waiting for me all these years.

I have the deepest gratitude to those who were instruments of hope and healing:

My parents always respected my decisions, but most importantly afforded me the time and space to feel and heal. I can’t write this in good faith and not acknowledge my financial privilege; it wouldn’t be right. My parents granted me time without judgment and opened their minds and hearts. And my father opened his wallet to my “one last try.” I am humble in knowing this is not an option for all.

My treatment team, both past and present stood with me on the front lines, and although saddened, still respected my ability to choose the amount of my own suffering and let me preserve my dignity through comfort care. To the clinic I went to and specifically to Dr. G, the way you treated me as a patient saved my body, but the way you cared for me as a human being saved my soul.

To be completely honest, I sometimes feel like a fraud to speak or write on the topic of palliative care. Yes, it was a very difficult decision I made, a decision that set up camp in a visceral, painful place in my heart, yet I pivoted. I chose to walk down a different country road. So, I’m torn.

I could tell you how things are today, how I am finally seeing the other side of my eating disorder, but when I thought of who I wanted to write this for, it didn’t feel as important. You do not need to hear stories about puppies, sunshine and rainbows right now. That will be a story for a different day, but you just need to know in this moment you aren’t alone.

I suppose my wish, and I think my responsibility, as a human being is to tell people this palliative option may be possible for them, that they don’t need to die by suicide. I say this knowing this is the way beloved friends of mine have passed because of their own pain and struggles. I want people to know there is another way, whether you are ethically eligible to pursue palliative care or not, there are options. There can be another possibility if you agree to entertain it and if you are in too much pain, there are people who will walk with you whatever path you choose.

You aren’t alone.