Music has played a huge part in helping me maintain my sanity during the COVID-19 quarantine, as I’ve found that the right song or album can set the tone for the day and provide inspiration when it might be hard to find. Whether it’s Bob Marley reassuring me every little thing is gonna be all right, or R.E.M. letting me know that the end of the world starts with an earthquake, not a virus, I’m a sucker for finding unintended meanings or purposes for the music I enjoy.
When The Clash’s “Should I Stay or Should I Go” started playing on Spotify recently, my brain kicked into high gear. This might be simply because it’s a killer song, but I think it’s more that the title and central lyric mirror a question that has been incessantly on my mind since I barred the doors and windows and took refuge in my bubble: If I do end up catching COVID-19, how long should I stay at home, and when should I go to the hospital?
If there is a “correct” answer, I know what it is. I’ve interviewed doctors and read every disability-centric guide on the web. As Dr. Thomas Bryce, the medical director of Mount Sinai’s Spinal Cord Injury Program, told me, as someone with a cervical SCI, I should hightail it to the ER as soon as I start to experience trouble breathing (for more from Dr. Bryce, see Facts About COVID-19).
I get that. I also understand the underlying medical reasoning, and would describe myself as a very risk-averse person. And while there is no way to know how I will react until I’m actually in the situation, I don’t see myself going to the hospital until I feel like I have exhausted every other option.
During good times, a trip to the hospital can be a disempowering, dehumanizing and, dare I say, dangerous experience for a person with a visible disability. As people with disabilities, we learn ways to combat this reality and secure the best outcomes. I forcefully advocate for myself, train my caregivers well, and cultivate advocates who can speak up on my behalf if I’m still not being heard.
But these are not good times. People are afraid, and hospitals are overtaxed. Many states and hospitals have prohibited admitted patients from bringing a partner or caregiver into isolation. I watched a friend who was not infected, but admitted for unrelated reasons, get stuck — alone — on a floor with all the COVID-19 patients. No visitors, no outside caregivers, just a steady stream of overworked doctors and nurses coming from neighboring rooms flush with the virus.
That is my worst nightmare. As much as I like to think the skills I’ve learned and the protections that are supposed to be in place will ensure my safety, I know that in this eerie twilight zone we currently reside in, this is not the case. In these uncertain times, there are few guarantees.
If something happens and I do get sick, I’m hoping that all the hours I’ve spent thinking about the right time to go to the hospital will pay off. For now, I’m turning the music up and doing everything I can to stay healthy. I’ve survived seven weeks, and I’m ready for the next seven.