Brave New World:
I don’t remember how to pump gas. I picked up the pump handle and stared at the buttons for a minute. Are you serious? No, of course, you don’t. You haven’t driven in a year. Probably a year and a half. And when in that time did you actually have to put gas in the car? I studied the gas pump. Credit card first? Or maybe I press the button first?
I glanced back at my new car. Finally, after years of waiting, I’d finally gotten my very own vehicle. Post bone marrow transplant and 21 years old, I desperately needed transportation. The only problem was that I didn’t know anything about cars, and my experience actually driving one was limited. I’d been sick, in and out of hospitals, since I was 15. During that time, I hadn’t done a lot of driving. In fact, I was starting to realize that “hospital world” and “real-adult” world were two separate entities. Especially when coming back to the world included having the immune system of a baby — currently 4 months old, to be exact.
It turns out that functioning in the world takes a lot of more effort when you’re starting over. That’s the part nobody prepares you for — relearning everything. For the last 5 years, I’ve functioned as a very sick person and learned to navigate the world as such. I lived the part of my life where you learn key developmental parts of yourself in the hospital thinking that I wouldn’t live past my mid-20s. Now, everything’s different. I am going to live. I don’t have a disease. I’m also an adult who’s never had a real job and paid taxes, but has contemplated their own mortality and understands health insurance. My body is completely different now — drugs that I’ve taken for years react differently to my body than they did before. I have no idea what my allergies are or how my metabolism works. Looking in the mirror every day is an experience — my face is changing and my hair is growing back. The way that my brain functions is a little bit different. I have anxiety about things I never did before and feel differently about other things. My food tastes have changed and so has my diet. Getting a BMT also changed a lot of my habits, specifically around cleaning and how much stuff I own. I had to stop biting my nails, and no longer have arthritis, so my hands are completely different. When I work out, running feels different because I can take fuller breaths when I breathe. I’m building back my body from absolutely nothing — a month in the hospital and 100 days of isolation causes quite the muscle degeneration. As you can imagine, jogging again has been a slow process. Four months ago I could barely get up a single step. Going out in public is a whole ordeal too — I have to Lysol down every surface and wear a mask everywhere I go. I have to be careful around anyone I touch. I can’t touch my face or mouth in public for fear of picking up germs. All of my food has to be prepared fresh. I’ve had to learn to cook for the first time. Even my gluten-free diet is in question — I might not have celiac disease anymore.
All of the pillars of my life that I had changed in a very short period of time. Sometimes, I find myself wishing they would come back, but then I realize what I’m saying. I left all of that behind when I decided that I wanted to live. I just didn’t know what that meant. I’m not sure that I could have. I know that I don’t regret it. Before the transplant, I often asked myself what I would do to live a life without my disease. Now I know — almost everything. But it was exceptionally worth it. Learning to live life as a healthy person is a lot harder than I thought, but it gets easier every day. I’m blessed to get the opportunity to do so. Now, I just have to learn to pump gas. And drive. And do taxes. And go to school. Just like everyone else.
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