A friend recently told me she had been feeling homesick despite the fact that she was at home nearly 24 hours a day. I understood what she meant. Many people are pining for their “normal” lives, for a way of living that feels like home. But I was also struck by the fact that I have not been feeling that same longing. Instead, quarantine has given me greater flexibility in how I engage with the world.
Life before social distancing hadn’t been ideal. I had spent the previous two years rearranging my days to accommodate a newly diagnosed chronic illness. It began as severe lightheadedness that came on suddenly one morning in March 2018. It quickly became a constellation of symptoms that included a racing heart, nausea, confusion, and extreme fatigue, especially when I was in any position other than lying flat on my back. After months of testing, I received a diagnosis of Postural Orthostatic Tachycardia Syndrome, also known as POTS.
POTS is a type of dysautonomia, which is an umbrella term for a host of conditions. Basically it means there is something wrong with my autonomic nervous system. Doctors describe many POTS patients as suffering from the same impairment in function as those with congestive heart failure. To deal with my symptoms and their treatments, I had to rearrange my whole life. Work, home, social commitments — it all had to change.
Some alterations were easier than others. I already worked remotely, so I was able to continue to work from home in whatever physical position allowed me to remain clear headed, organizing my schedule around various doctor appointments. And technology allowed adjustments to my typical routines. I ordered grocery and medication deliveries, read on a Kindle instead of struggling to hold up heavy books, and enjoyed movies on my couch rather than in the theater, so I could prop up my feet and pause for breaks.
Yet I still felt the strain. Cooking and showering, which both involve a lot of standing, were difficult. Driving or riding in a car made me dizzy. In-person meetings that required sitting in one position for a long time were draining. I often felt like I had to miss out on the things I love simply because participating would leave me without the energy to meet my daily needs.
The Spoon Theory, created by Christine Miserandino, is a metaphor for how people with chronic illness must ration energy. Her idea is that every person begins the day with a certain number of spoons. As the day progresses, each activity uses up some of the spoons — getting dressed, meal prep, working, and so on. Those of us with chronic illness have fewer spoons, and we might need more spoons for each activity. For some people, dropping off a child at school may use one spoon (or even half a spoon). I use more, though, because of the dizziness that comes with driving and the exertion it takes to stand outside the classroom. Everyone has to budget their spoons, but I have to manage mine more carefully.
Some of the adaptations that our society made in quarantine this spring have allowed me to conserve my spoons. It’s surprising how quickly and easily these changes came about, given how much resistance there was to making the same changes for those with chronic illness and disabilities before. These adjustments are providing me with an element of choice that I have been sorely missing. For example, now that my church is conducting online worship services, I am able to participate from the couch with my feet elevated. With evening committee and board meetings going virtual, I don’t have to nap in the afternoon to gather the energy to drive and sit upright after dinner. And now that I can virtually join the happy hours that I used to skip because I was just too exhausted, I get to catch up with my friends from bed, helping me feel supported and included.
Don’t get me wrong: I don’t see any silver lining to COVID-19 and the devastation it has caused. And I’m not saying that life under shelter at home orders is easy for any of us. There are still plenty of accessibility issues with videoconferencing and other technologies that are now widely used. But my experience of the world and my capacity to participate in it have expanded during social distancing. I have more choice over how I spend my time. That freedom is exhilarating.
When it is time to “go back to normal” after this pandemic, I am cautiously optimistic that there will be thoughtful discussions about how to continue to ensure access for those of us with chronic illnesses and disabilities. I hope we maintain the option to choose how we participate in activities, whether in person or via the Internet. That in our rush to return to a way of life that feels more like home, we aren’t afraid to make some changes. Because if these opportunities for involvement recede and things revert completely, it will leave many of us feeling deflated, facing a life that is suddenly smaller, narrower, and more difficult to navigate.
Ruth Kogen Goodwin is a writer and editor living in Southern California. Follow her on Twitter @ruththeputh.