I was healthy until I woke up one day and found out that I wasn’t. One day I woke up and I found out that I needed surgery. Afterwards, I woke up and found out that I had cancer. I woke up in the neurological ICU a month after that — on a ventilator, restrained, my left side completely paralyzed — and found out that I’d had a stroke. I was young. I had “no significant past medical history.” Then one day I woke up and everything was different.
2,137 days have passed since the day that I woke up in the ICU. I’ve made it past five years of cancer freedom. My smile is almost straight most of the time. But 16 different conditions have been added to my problem list. Five years in and I still see at least six different doctors two to four times a year every year. I still get an MRI or PET CT annually. I still have blood drawn every six months. I can make lists of all of things that make it seem like I’m healthy and all of the follow up appointments and procedures and labs and imaging that suggest that I am not. What I cannot tell you is how much this almost healthy perfectly imperfect life of mine is worth. Neither can I tell you how much it cost to get me here: waking up 2,137 days after a nightmare. I wouldn’t know where to start counting.
Millions of dollars have been spent on keeping me alive and almost healthy. I don’t know exactly how much everything cost because, honestly, the thought of adding up all those bills and confronting that number head on terrifies me. I am one of the lucky ones. My insurance has covered the majority of the cost for my care. However, I know that the only reason that I have excellent coverage and the only reason that I have insurance in the first place is because I am a physician. One of the perks of providing healthcare to others is that someone has been there to provide healthcare to me. That doesn’t mean that I don’t know how privileged I am. That I don’t know that the instant that I stop doing this job I would lose my coverage. Or that I don’t understand that, if I lost my job, I might never be able to obtain or afford health insurance again because of the problem list that marks me. The price someone else has paid for my life.
Someone woke up today and found out that they had cancer or a stroke or both. Someone will wake up tomorrow or next week or years from now and realize that they’ve started their own list of preexisting conditions. Or maybe it’ll be their child, their wife, their father. Millions of people just like me will go from healthy one moment to a costly liability the next. None of us asked for this. Should we be discriminated against because of our horrible luck? Should we be forced to choose between housing, food, or anything else and the medications and therapies that keep us alive? I don’t want to have to make that kind of decision. I never planned to in the first place. All I did was wake up.
Diana Cejas is a pediatric neurologist at the University of North Carolina at Chapel Hill and faculty of the Carolina Institute for Developmental Disabilities. She has survived both cancer and stroke. Many of the essays that she writes are about her experiences with illness, disability, and balancing neurological recovery with an 80 hour work week. Her other stories cover the rest of her ridiculous, colorful, wonderful life. She has no disclosures. Twitter: @dianacejasmd.
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