I’ve known that I was going to die young since I was eighteen. After being diagnosed with a collection of rare autoimmune diseases in my late teens that continued to relapse aggressively every couple of months, it was only a matter of time until one caught up with me. There was no part of me that expected to reach my twenty-first birthday or graduate college, and while that may seem somewhat gloomy, it was a simple fact of my reality that I’d learned to accept over my six years of illness.
Growing up as a young person with a disease of any kind is incredibly isolating. I often felt disconnected from the lives of my peers and didn’t have a typical high school or college experience. From writing final papers and taking exams in hospital waiting rooms to casually shooting myself up in a grocery store parking lot before going into a bar, I’ve often struggled to find ways to relate to other people my age. But in the pockets of life in between hospital visits and medications, I tried to live a normal twenty-something life. I traveled to other countries and had internship opportunities. I dated around, even though it was difficult, and maintained my grades in school.
But I also knew full well what was coming — that someday I was going to wake up and find out that my disease had relapsed yet again and I probably didn’t have very long to live. This knowledge impacted every aspect of my life even when I didn’t want it to — relationships, friendships, and financial decisions. Every time I made a new friend I worried that my death would hurt them. Every time I fell in love I was terrified for the moment we would have to say goodbye. I also tried to hide my illness most of the time; in order to find some fake sense of normalcy for those around me. Most of the time I was able-bodied passing unless I’d just gotten back from a bad trip to the ER or a hospital stay. To other people, I was a typical college student — until I wasn’t.
Finally, in December of my Sophomore year of college, my disease relapsed for the sixth time. I’d had suspicions about it for weeks, so when the blood tests came back positive I was relieved. By that point, I’d been waiting about a year for it to happen again and I was mentally prepared for the worst. One by one, the drugs started to fail and it took the doctors three weeks to stabilize me again. But this time, it was clear to me that the next time would be the last time.
I went back to college that January certain that semester would likely be my last and part of me was okay with that. After five years and my whole young adult life, I was tired. That doesn’t mean that I didn’t want to live, but I was also standing at a line in the sand that I’d considered intimately for a number of years. When I looked forward into my twenties, I didn’t see a quality of life that I wanted for myself. If I was going to die, then I wanted it to be on my own terms.
Then, in early February of 2018, my Rheumatologist decided to send me to a new specialty that I’d never heard of before: bone marrow transplant. The Rheumatology department at my hospital had never considered transplanting an autoimmune disorder before, especially my disease, but she thought that it might be a good fit considering the situation. I was willing to at least talk to them — I didn’t have anything to lose.
From the moment my transplant doctor opened her mouth, I knew what I wanted to do. I didn’t actually know a lot about transplant process or even what it would actually entail, but when she spoke the words that nobody had ever dared speak to me before, my mind was automatically made. This could cure you. You could live.
There has never been a moment of hesitation since. At that moment, I chose transplant because, for the first time in my whole life, I was choosing something for my body. I could control when I got chemo; when I was admitted and how I died. I was choosing to take my power back over a disease that had controlled and taken entire years of my life. This was it — if it killed me then it killed me.
Bone marrow transplants are high mortality rate, extreme procedures that are easily the top of modern medicinal science. The entire process takes place over a year, starting with sixteen to twenty days of chemotherapy, the receiving of stem cells, and then the one hundred days afterward when the new immune system grows back. After that, you not only have new blood (I got a new blood type), but you’re pretty much a baby again. It changes your allergies, your vaccinations, and wipes out any disease that you had before. Everything in the body regenerates, especially if you had a disease like arthritis or celiac disease like I did, that effects the inflammation in your body. You’re basically a new person.
I was admitted for transplant this past July and received my bone marrow transplant on July 18th at 11:30 pm. Most people don’t realize that you’re actually awake for a transplant — it’s a simple blood infusion of cells that you actually get to hold in your hands before they hang the bag and you watch it drip into your chest. In my mind, that moment is the Rubicon. There is everything before and everything after.
The woman who emerged back into the world after 100 days of isolation is different in lots of ways, but most radically in the way in which I frame life. For the first time since I was fifteen, I’m not only able-bodied beyond my wildest dreams, but I am also not planning of dying anytime soon. That in itself is a perspective shift that nobody could have prepared me for and one that I am still very much adjusting to. I wasn’t really planning on being here and now I am.
People believe that once you get out a traumatic period in your life that the world should automatically snap back into focus, but that’s also not the full picture. My identity as a disabled queer woman is now very confusing and murky. I have struggled to create a new identity for myself and am still very much recovering from years of medical trauma. It also didn’t take me very long to realize that while I had the whole ‘sick person’ thing down to a science, being a functional human in the real world is a lot different. Suddenly, I understood my twenty-something peers dread for the first time. That’s absolutely terrifying.
Going back to college after transplant has been especially challenging. Sitting back in the same classrooms with the same people; knowing full well that so much of my life has changed. I am no longer friends with people that I was close with and rarely participate in the same activities. My interests have changed drastically, as has my major, and trying to gain understanding from those around me has been tough. Even my own family is still adjusting to the new me — a person to whom they are no longer blood-related but love very dearly.
The entire structure and direction of my life has changed forever and on days when everything is going right, I often wonder why I was given my life when so many others weren’t. Why did this go right for me? I talk to other friends of mine or see stories on the news about people who didn’t make it — people who had family, friends, and wonderful lives who died or will never get what I have. There are days where it casts a shadow over everything I do. I often think about a story that I saw on the news about a man who died because he couldn’t afford insulin, when I, a temporary diabetic because of my medication, had two months’ supply that I would never use sitting in my fridge. I would have done anything in the whole world to send it to him. It makes me sick sometimes at night to know that I’m here and he isn’t because of something so small.
There are other moments when this guilt knocks me off my feet too. Sitting across from my partner at a bar, healthy and happy, eating a cheeseburger feels like a strange parallel universe that’s difficult at times to accept. While I am happy and excited by my new life, the reality is at times so overwhelming that I can hardly move. Everything that I knew about my life is gone forever, and when I look in the mirror I’m proud of the person that I see looking back, but I also know that she shouldn’t be there.
It’s been about 10 months since transplant and I am just now reaching a comfortable moment in my transition. I am coming to terms with the idea that recovery is a lifelong process of growth and adjustment — we are all recovering from something we want to move past. In that way, I’m just like everyone else: a young woman trying to figure out what she wants; what food she likes and how to take care of her body. I’m trying to live a balanced life at the moment but plan for a better future at the same time. I’m learning how to cook, going to college to get a degree, and taking joy in training for my first half marathon in October. These aren’t abnormal things to do in your twenties. And while this isn’t a life that I was expecting to have, I’m ready to finally figure it out for myself.