My first day of high school was a blur of heart palpitations, dizziness and nausea — partially because I had built the high school experience up so high from years of consuming teen soap operas and watching my sister apply for colleges, but mostly because my autonomic nervous system had stopped working and no one knew it yet. The only month of high school I had before my body completely shut down was a rush of running between classes and trying to fit too many books in too small of a locker, accompanied by vomiting, fainting and waiting to see if my head would actually split open (or if it was simply an illusion).
My first day of college was both better and worse. I was properly diagnosed, and in theory, I knew how to treat my diseases. But I spent the weekend of NSO in Stanford Hospital because, after years of living at home, I wasn’t used to pushing myself to keep up with anyone else, let alone hundreds of Stanford freshmen. The first day of classes, I woke up, completed my cardiac exercise, walked under the blazing sun from my dorm to Psych 1, listened to the lecture, walked back, collapsed for a few hours and then began reading for my next class. Friday evenings I would spend with friends. The rest of my freshman year, I just tried to keep my body going and pass my classes as I adjusted to life as a college student with chronic illnesses.
Now, many years later, I am doing much better. I am not well; I will never be well, but I have a social life and balanced classes, and I spend my many hours in bed happier and more content with both my studies and my life. As I embarked on my first year of grad school, I was filled with more hope than I can say. I was going to meet students closer to my age — since I took time off and always had a reduced course load, I was much older than my undergrad friends. I planned to hang out in the grad student lounge, a place of belonging in which I hoped to find the sense of community my illness had isolated me from for so long. I was going to continue to make close connections with professors, attend office hours and be close to feeling like the adult I had biologically been for years. But of course the world has changed.
I begin my first year of grad school in an situation eerily similar to the one that dominated my high school years: living with my parents, isolated from the world, cut off from friends and feeling as though my life is passing me by without my getting to live it, or at least to live it properly. It is as though I am once again 14, bedridden and stuck in amber. Of course it isn’t the same at all, and I tell myself that, but the overwhelming sadness is hard to avoid. Thanks to medication, my immune system cannot fight off a cold, let alone COVID-19, and so for the next year (and maybe more) I’m back where I was.
Despair is a hard feeling to run from these days. If a plague that could kill us isn’t enough, we could very well be witnessing the end of American democracy, of women’s right to choose, of the Affordable Care Act. And somehow, it is harder when the whole world is stopped than when it was just me. It is more upsetting to know the danger isn’t just to my health, but to everyone I know and love. I have always said it is better to be the sick one than to watch a loved one be sick, and that is how I feel about the country right now — it was far better when I was the only one locked away fearing for my life.
And yet, it isn’t the same. I am still in graduate school at Stanford. I am still studying the subjects I love and pursuing the questions I find most urgent in the world. I am meeting new and brilliant peers on Zoom, which is much better than not meeting them at all. I am having Zoom movie nights with more friends than I would have the energy for in person, a vast improvement from my mom and I huddled around a tiny TV all night because the pain kept me from sleeping. And I am so lucky to be here. To have survived long enough to live through another isolation is a gift I am trying never to forget.
The first weeks of grad school aren’t what I hoped they would be. I don’t think anything is what anyone hoped it would be this year. But they are happening. They exist as an experience from which I can learn and grow and move forward towards a future. And I think that is the moral of my story, of this story, of life, as someone with chronic illness: To keep going is to win. To survive is victory. To hope is to triumph.
Contact Jen Ehrlich at jene91 ‘at’ stanford.edu.