Eight years ago, I got a virus and never fully recovered. The virus was the seasonal flu, and I developed post-viral chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME/CFS). My autonomic nervous, immune, and digestive systems were all affected. I have fatigue, muscle and joint pain, cognitive problems, low blood pressure, and tachycardia, all of which are made worse by overexertion. I’m also prone to new viral infections and pneumonia. I have worked hard and been lucky enough to regain some of my health over the past eight years, but I remain disabled.
As news of the pandemic spread, I was afraid of what might happen to me if I got seriously ill with COVID-19. My husband and I adopted very strict isolation protocols, which one of my doctors described as “perfect” when I first ran them by him. We’ve been lucky in that after many years of being careful about my limits, no one has pushed back on the boundaries we’ve set for ourselves. Everyone knows that my no means no.
I was also afraid that the aggressive virus that causes COVID-19 might leave a lot of people suffering with debilitating post-viral illnesses like mine, and unfortunately, the phenomenon of Long COVID is making a lot of formerly healthy people very, very sick. Post-viral illnesses like mine aren’t well understood, and patients often have to advocate strongly for themselves at a time when they are feeling their worst. It took me almost two years to figure out that I had postural orthostatic tachycardia syndrome (POTS) and get my doctors to test for and treat it, improving my quality of life somewhat. Many people with ME/CFS also have POTS, but my doctors didn’t think to test for it on their own, even when I fainted in an exam room.
Being sick shrank my world quite a bit. I no longer had coworkers. I could no longer go to Friends meeting. I had friendships that didn’t survive my illness. When I could no longer participate in some of the activities we used to do together, I heard from them much less often.
Moving in-person activities online doesn’t make them more accessible for everyone, but it really does for me.
A period of loss and deprivation can lead people to think about what’s important to them, and I’ve done a lot of that over the past eight years. I need to prioritize my health, but how can I make the best use of the small amount of time and energy I have left?
I know that I want God to be at the center of my life. I know that I want to have communities where I feel included and supported, as well as deep, long-lasting relationships. I want to feel useful, while also having my inherent value as a human recognized, even when I’m not able to do as much as I used to.
I’d been longing for a regular Bible study but hadn’t had the energy to find or start one that met in person. None of the local meetings seemed to have one going, and actually hosting and leading a Bible study in addition to the scheduling involved seemed like more work than I was capable of doing.
Once the pandemic started shutting things down, however, things opened up for me. Moving in-person activities online doesn’t make them more accessible for everyone, but it really does for me.
When an event is online, I don’t have to take into consideration how accessible the venue is for me: Are there stairs? Is there air conditioning? Will I be able to have a seat with enough back support where I don’t have to turn my head too much? Is the event at a time of day when I can reliably get a seat on the subway? How far away would I have to park? How hot is it outside? What do I do if I feel much worse than expected? Is someone available to pick me up? Can I lie down? Do I trust the people around me to take care of me if I faint?
All too often, one or more of those answers was no, and I would have to stay home.
Photo by Callum T. on Unsplash
Sometime in May, I realized that an online Bible study would be manageable for me and was totally feasible now that so many people were having to learn how to use video conferencing software for other things. I started asking around and soon found four Quaker friends in Canada and the United States who were interested in gathering for my Pandemic Bible Study experiment.
After a little discussion and some trial and error, we ended up meeting on Monday nights after a toddler’s bedtime but before my rather rigid bedtime of 10 p.m. I’d initially hoped that we could meet at least monthly, but after our first meeting, it was clear that everyone wanted to meet more often than that. Since then we’ve met almost every week.
We check in with each other and talk about our partners and children, our parents and jobs, our joys and sorrows. Then we read a short passage from the Bible several times, using different translations and sharing our reflections. We end each session by taking a moment to pray for each other and hold each other in the Light.
There are ways in which meeting in person would be better, of course. It would be wonderful to share tea and cookies and to greet each other with hugs instead of waving at computer screens. On a regular basis, though, the more than eight hours it takes to drive between Massachusetts, Maryland, and Ontario would be an issue, even without taking into account chronic illness, babysitters, bedtimes, and work responsibilities that don’t always fit neatly into a nine-to-five schedule.
Like many people, I’ve given some thought to what I’d like to do when the pandemic is finally over. I’m looking forward to meeting some babies, especially Olivia, my beautiful, bright-eyed niece who was born over the summer. I’m looking forward to hugging my 94-year-old grandmother again. I’m looking forward to having people over for dinner and having the house to myself during the day once my husband starts going to the office again. I’m looking forward to seeing a movie in a movie theater.
Our little Quaker lady Bible study intends to continue meeting regularly, even after the pandemic. It encourages us, sustains us, helps us connect to God, and deepens our faith. Meeting regularly helped us build the trust and familiarity that encourages the kind of vulnerability and sharing that deepen intimacy. The fact that it is online means that the mothers are able to join in from home while their babies sleep; the exhausted workers can finish up their dinners while we check in with each other; and nobody can smell how long it’s been since I had the energy to take a shower or see the pile of laundry on the couch beside me.
We all have the opportunity to re-examine our priorities and make sure our resources, our time, our energy, our money, and our attention are focused on what is most important to us. We don’t have to go back to normal, where some people were unintentionally excluded from full participation in our communities.
The pandemic has given all of us the chance to see more clearly who is being included and who is being excluded. Some people are more isolated now because they lack access to high-speed Internet or don’t have a computer at home, are uncomfortable with technology, or need captioning that isn’t being provided. Some people with chronic illnesses and mobility-related disabilities were excluded from physical spaces due to unmet access needs, and some parents just need reliable and affordable childcare in order to participate in certain activities.
We all have the opportunity to re-examine our priorities and make sure our resources, our time, our energy, our money, and our attention are focused on what is most important to us. We don’t have to go back to normal, where some people were unintentionally excluded from full participation in our communities. As individuals and as groups, we can take this opportunity to make intentional changes to deepen our relationships and expand our circles, even as we wait for the pandemic to be over so that we can safely resume gathering in person.