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I have a confession to make: When COVID-19 shut the world down in March 2020, I was glad—relieved, even. Suddenly, everyone had to stay home and worry about their health. It wasn’t just me anymore. My life has been blotted with illness. As a child, I had intractable migraines that forced me to miss school and lay in darkened rooms with ice packs sweating over my eyes. In my early 20s, I was diagnosed with cancer. (When I went back to my neurologist and told him about the cancer diagnosis, he looked at me and said, “If you were a horse, we would’ve taken you out back and shot you by now.” I cried the whole way home.) When I went into remission, things seemed okay within the walls of my body. (I know most people don’t see their bodies as a prison, but I always have.) My migraines were under control. I was still more tired than I was before I had cancer, but I was dealing with it, and then, two years ago, I got into a car accident—the kind where you hit your head and don’t wake up for 10 minutes. The kind where your brain bleeds and you always have floaters dancing through your vision. The kind that comes with a new diagnosis: traumatic brain injury (TBI).
Now the end of the pandemic is near in the United States and friends will ask me to meet in crowded, loud buildings again. People are getting vaccinated, businesses are reopening, and classes are resuming. I know how many people have been depressed beyond measure after living inside for a year. I’m glad life is resuming, but I’m also painfully aware that I’m about to start disappointing people again. For the past year, I didn’t have to. There were no happy hours to flake on at the last minute because I wasn’t feeling good. There were no plans to cancel the morning of because my migraine woke up with me. It’s time to dust off my old catchphrases: no, I can’t go. No, I don’t feel good today. No, it’s too loud there. No, no, no.
I’m not alone in these feelings or observations. Lara Parker, a writer with endometriosis, said it was difficult to watch able-bodied people experience a small taste of what a chronically ill life is like and judge it as “pointless, boring, and not worth living. Life never goes ‘back to normal’ for us and while I don’t expect able-bodied people to always understand that, some level of compassion and sympathy would be nice.” As the United States clears 300 million vaccination doses administered, chronically ill and disabled people are hoping that the accommodations they were able to access during COVID don’t disappear. Parker says being able to work remotely has changed her life. “I don’t have to worry about if I get to work and suddenly have a pain flare and wonder how I am going to make it home,” she says. “I don’t have to spend so much of my energy on a commute or just getting ready in the morning. This is an accommodation I’ve always needed but never felt like I could ask for. Moving forward, I will absolutely not accept anything less than this option permanently.”