“How’s school going?” My favorite perky, blonde nurse slid a blood pressure cuff on my arm and grinned. “Ready for midterms yet?”
“Barely,” I shrugged. “I’m not really going to class much; still making it happen though.” The cuff beeped and started squeezing my arm. I tried to stay still. “There’s no time. I’m always here.”
I move my other arm around to gesture to the hallway in the all too familiar rheumatology clinic at Nationwide Children’s hospital. The nurse smiled at me and I smiled back — she really was my favorite. She always hugged me and I liked that. Twenty year olds need hugs too, you know.
“It’s not forever,” she sighs. “You know that.”
“I know,” I smirked, “but it’s been 5 years.”
I can feel my throat tighten whenever I put a time stamp on my journey with chronic illness. I don’t like to think about it — how much time has actually gone by since my Sophomore year of high school when all of this started. During that time I’ve graduated high school. I’ve gone to college and changed cities and friends. My whole life has changed. I’ve also had 5 near death experiences. I’ve lost the ability to walk and gained it back more than once. I’ve seen hundreds of doctors and medical staff (literally, hundreds) and had my blood drawn so many times that my veins occasionally can’t hold an IV. I spent all of this past December (2017) in the hospital because of a three week flare and have just recently come back to being myself (kind of). Now, we’re considering a bone marrow transplant, which is only slightly terrifying. The mortality rate for my disease and a bone marrow transplant are about the same, so to me, it’s the same amount of terror both ways.
If you can’t tell already, I’m not necessarily upset about my life circumstances anymore. I’m past that (for the most part) and I’ve moved onto the acceptance. This is my life. I get it. There’s nothing to be upset about — I’m a 20 year old woman with a life threatening (likely genetic) autoimmune condition. Everything sucks all the time and that’s real life. If I spent all of my time being upset about it, I would never get anything done. That’s not to say that I don’t have moments (being upset is natural and justified), but I also have to live my whole life in this disaster. You only get to do your early 20s once, and I refuse to spend what little time I get to experience of mine sulking about something that I can’t change.
And for me, time is the most important thing that I have.
On average, I would say that I spend about 5–8 hours in a hospital a week. Or at least, some sort of medical facility, whether it’s physical therapy or a doctors appointment or meeting with my psychologist. On weeks when I have a blood transfusion, that number doubles to about 14 hours, give or take. Sometimes it’s even more than that. If I end up with appointments stacked throughout the day more than one day a week, that turns into many many hours of me, sitting in the corner, sprawled out over my homework.
Despite my medical conditions, I’m still a college student. Kind of. I show up to what I can, and do what I have time for, because I’m blessed with wonderful professors who actually care. Not everyone is as lucky as me and I realize that. If it wasn’t for their understanding, I would have had to drop out of college completely a long time ago. I’m taking about 10 credit hours right now, which is not a lot for a normal person, but more than enough for me. I spend most of my time in the hospital pouring over my laptop, writing papers to pass the time. When I finally get my degree, most of it will have been done in hospital waiting rooms. I get that it’s unconventional — but you accomplish your goals in life with what you have. I want to go to law school. I want to get a masters degree too. I want to publish a novel. During my weakest moments, that fire keeps me going.
Then, there’s everything else in my life. Remember, I’m a 20 year old woman. I still have friends and drama and boys and girls. I have a family with two younger siblings to keep track of. There are extracurricular activities and the whole “finding yourself” thing your supposed to do in your twenties. There’s sex and alcohol and poor choices. There’s the political environment of 2018 too (and I’m a news addict).
The point is: my life is full — bursting at the seams, actually — and sometimes, that makes sitting in the hospital hard. Because for every moment I get to spend actually living, I’m spending another hour sitting on some plastic chair in whatever-the-fuck clinic thinking about my own mortality. When I think about all of the moments I’ve missed — events and plans that I’ve had to cancel — it makes me sad. Sometimes it’s hard not to feel the weight of everything I’ve lost. From my college plans to loosing a trip to Germany, having a chronic illness has made my life unpredictable and, at times, downright impossible to plan. I have no consistency and no control. Every foundation I’ve ever tried to build has been swallowed by quick sand.
Except, of course, my relationships. Learning to manage my life as a very sick young adult would be impossible if it wasn’t for the help I get from other people. Time is hard to manage and I don’t have a lot of it, but the world is a more manageable place with people you can count on. My sense of loss is often replaced by fulfillment in my friendships, and even my darkest days are lighter. Building my support system has been the real key to my success at life. My friends quite literally keep me alive and my professors do too. Communication is also key — always sending emails to the right people and making sure to keep everyone updated. I get paperwork for every single thing I possibly can and always send it to the school just in case. The truth is that you simply have to be willing to do what needs to be done — always. It’s exhausting and emotionally draining. I spend a lot of time curled up in my bed, wanting everything to stop. But at the end of the day, I have to get out of bed. I have to do the thing — live life — do college. Because someday I will thank myself.