I have spent the majority of my young adult life growing up in hospitals. From the time that I started passing out in school at fifteen to my bone marrow transplant at the age of 20 this past July, there have been weeks where I’ve been required to be at the hospital anywhere from 10 to 15 hours a week.
The cost of having a rare blood disorder as a young person is high — the financial, social and emotional toll isn’t hard to understand. But there’s also an academic cost to spending your life being pumped full of medications that change your cognitive behavior and having symptoms that could send you into extreme pain at any moment. On top of that, being sick is a timely activity that can make getting a good education feel impossible.
High school comes with its own challenges for students with a chronic illness. I wasn't even properly diagnosed with MAS/HLH and the right kind of arthritis until the final month of my Senior year of high school. The three years before were spent in a constant state of confusion — missing months of school, stumbling through the legality of an IEP (Individualized Learning Plan), and even having a teachers attempt to kick me out of classes because I “couldn’t hold a pencil to take the final test.”
All the while I was getting worse — I was 90 pounds and unable to use my hands without crying. I got a temperature of above 101 every single night for nearly 6 months and then had to go to school the next day. I went to Senior prom with a puffy face from prednisone; fresh out of the hospital after a near-death experience.
As you can imagine, my academics weren’t exactly my priority as a teen, although I did get lucky. My learning disability growing up had prepped me well to learn at my own pace and understand the nuances of the American public education system in regards to disability. I was also blessed with a mother who was a school psychologist and a school district that could, for the most part, provide reasonable accommodations.
I was also quite determined to get into college. Not only did I complete almost all of my final work from a hospital bed, but I also managed to get a full-tuition scholarship — despite the fact that on the interview day for the scholarship I had a temperature of 102 and almost passed out during the activity time.
College turned out to be a different experience altogether with a different set of challenges. Going to a small, private university with professors that I knew personally and small class sizes has given me the ability to spend long hours at the hospital without forfeiting my grades. I got lucky with the school that I chose, and I often say that their willingness to work with me and not against me will be the sole reason I am able to get a college degree.
But there have been other casualties — becoming a Creative Writing major was not my first choice, but one that I choose because I could write long essays and read novels in the hospital without having to be in lecture.
Over the last two years, I’ve written entire essays, completed finals, read textbooks, and studied for exams in hallways, waiting rooms, surgical centers, infusion rooms, ERs, and sitting on exam tables waiting to be given an X-Ray.
I have hooked my laptop up in the corner, curled up in a ball, and completed entire 10 page analysis of statistical data while sitting next to an Amish family in the lobby of a children’s hospital. I’ve sat in emergency rooms at 3:30 am reading a philosophical argument from Nietzsche on a post-religious society and then applied it to the works of Emily Dickinson. I have tried to work my way through logic problems high on morphine and been given IV drips of steroids while trying to calculate the radius of a hexagonal figure.
I have also spent this time reading other things. I am a person that genuinely enjoys reading— I read 50 during my bone marrow transplant. At the darkest moments of my life, I have found solace in learning new information or going somewhere within their pages that is far far away from the nice woman poking me with a needle.
These hours sitting in the hospital have quickly added up to my own personal little education that I would never trade for anything. When I add up my years in waiting rooms sitting quietly with a novel or a news article, I begin to understand why I have somehow managed to become incredibly educated even though it hasn’t always been traditional.
I have spent my years of illness reading about the newest public policy, health care treatments, news articles, and crisis in the ethics of technology. I’ve taught myself to read philosophy, ethics, fiction, non-fiction, and am up to date on the hottest new memoirs. I’ve been trained to read and understand legal documents from reading countless health insurance bills over the years. I have spent my years alone in my room watching videos about economics, politics, geography, international politics, and psychology.
The end result is an education that is non-traditional, but incredibly thorough and personalized. The truth is that if you want to learn and you have a passion to do so, we live in a time where information has never been so accessible. My waiting room education is one that I am incredibly proud of; something that has carried me through during times when I wasn’t sure I was going to make it. It gave me a reason to wake up in the morning and something to do on days when I couldn’t get out of bed. It still continues to do so.
There are days when it is difficult to see my illness as any sort of gift. When I am struggling the get out of bed or thinking about the years of my life that I’ve lost to hospitals and the experiences that I will never get back as a young person, it is easy to feel like it was all pointless. Yet my education is something that my illness has never been able to take away from me and perhaps provided for in a very special sort of way. I’ve been blessed with countless hours with a book and the ability to write. I will choose to see the good in that rather than the loss. I do not believe that it is one.