I don’t want the pursuit of health
The health, medical and wellness industry exists in direct relation to capitalism. There is this common vein of thinking that runs throughout disease areas that says healing is a full time job. If you aren’t investing all your time, money, energy, effort into getting better, you’re not doing it right. The treatments don’t fail you, you fail the treatments. There is a one size fits all medical model, and if you are not doing everything you can, you’re not trying hard enough.
I wrote these words last week during an AMA I did on TransplantLyfe: I know the extraordinary measures that can be taken to save a person, I know what’s on the other side of that and I knew I didn’t want that again. I made this comment in regards to my latest abdominal surgery. People ask me how I did it, and I always say I have no clue but if I’m being honest I think I do.
I attended a class with Sophie Strand this weekend. Sophie is a disabled writer whose work I admire and appreciate, and she brings a new perspective to this sea of disabled voices I don’t see often, and one I agree with strongly. She speaks on ecosystems and stories, the body in relation to everything around it.
Diagnosis, she says, is by definition the discernment or recognition of something through isolation. This isolation experience, this diagnosis, is the beginning of the health journey inside the current medical model for most individuals. Healing and health becomes a solitary task. Your body becomes your responsibility. Working in transplant advocacy, I agree. You are your own best advocate. And I see great harm coming from this outlook of your body is a problem to be fixed and it is on you to heal better, work harder, fix it.
I am not a problem to be fixed. I am a person.
I realized something recently that maybe I should have realized before. And it takes a few tangled web stories to get there. The first is a quote from the Devil Wears Prada in which Andy says “But what if I don’t want what you want?” to which Miranda Priestly replies, “Don’t be silly, Andrea, everybody wants this.”
The second comes from a memory when I was 17. I was in the ER, in a crisis situation and triggered by severe medical trauma, being asked to undergo a procedure I’d never had before, nor was it properly explained to me. I ended up getting a different procedure, everything was fine, I had an amazing doctor who called me on the phone from his office in another city and coached me through it. But after all was said and done and my blood sugar returned to a stable level and I was no longer hysterical, the ER nurse I had said, “If I was that close to death, I would have done everything I could have to prevent that. I don't know why you didn’t.”
Let’s erase trauma and the effects of PTSD on the brain. Her words stayed with me for years, and still ring in my head almost 10 years later.
What if I don’t want what you want?
I see a lot of people in transplant, especially in the field I work in with innovation and advocacy, focused on the next best thing. Science is improving, better drugs need to come out with less side effects, sign up for the clinical trial, do, do, do. It reminds me of healing being a full time job. If you’re not getting better you’re not working hard enough. And it took me up until recently, 2.5 years post transplant, to realize I don’t want that. It sounds crazy, even to me.
Why wouldn’t I want the trial, the new drug, the whatever if it meant possibly furthering innovation and science and improving care for millions of people around the world living with transplants? It’s a loaded question, and I think it has to do with why I got my transplant in the first place.
I remember thinking pre-transplant if I got one good year, it would be more than enough. I wanted to eat fruit and let the juice drip down my chin, I wanted the energy and ability to hike up the side of a mountain on our family trips every summer, I wanted freedom from the constant 24/7 job that was living with Glycogen Storage Disease. And that is still what I want, more than anything.
I am so glad there are people out there who want those things. Even with my own complicated feelings towards scientific advancement, there is no denying how far medicine has come. And I am far more interested in stories and connection and a little bit of magic. I’m far more concerned about the ways in which the body heals when we let it be easy. When we stop trying so damn hard to turn a chronically ill body or a transplanted body or a disabled body into a well body. There is no going back. And the moment I realized that was the moment things started to shift.
I’m really interested in collaboration, in the unique union between my native body and my donor’s organ, and how there will always be this interconnectedness between us. I’m really interested in the stories my body tells, and her wisdom. I chose my medical team because I trust them to take care of me and do what’s best for me, and of course if they recommend something I’ll take it into consideration but I don’t want to spend my entire life chasing the next best thing.
I want to chase what lights me up. I want to spend my days eating fruit and kissing my husband and soaking up sunshine. I want to be really truly alive while I’m alive.
