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The coronavirus might not be the worst of it
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For years, my chronic illness kept me isolated. The pandemic helped me get closer to my community.

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I have been a member of my synagogue for seven years, and yet until last year my fellow congregants did not know me and I did not know them.

They didn’t know I’m a writer, disability advocate and avid consumer of whoopie pies. They didn’t know I live a stone’s throw from our shul and still am rarely able to get there. And they didn’t know the reason for this: my chronic illness.

I write this essay under the flashing neon sign displayed over all of our lives right now, the one that reads: “The vaccine is here!” A return to post-pandemic normalcy is underway.

This leads me to a strange paradox: The conflict between despising a deadly pandemic and, at the same time, recognizing the gift it has given me. For the first time, I am able to be part of a Jewish community. This is because, while the pandemic has kept many of my fellow congregants at home for a year, I’ve already been there for over 30.

I was brought up by artist-activist parents committed to tikkun olam — Hebrew for “repair and improve the world.” Mostly secular, we celebrated Jewish holidays but rarely entered a synagogue. I didn’t begin to embrace the importance of a Jewish community until my late 20s — coincidently, about the same time I became sick.

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a devastating neuroimmune disease. It often develops following an infectious illness, coming on like this: You get what you think is a normal cold, bacteria or virus, but then you never return to full health. For some, it starts after mononucleosis (caused by the Epstein-Barr virus), just as it did for me.

I still live with ME/CFS today, years after first getting it, along with up to 2.5 million others in the United States and 24 million around the globe. Tragically, experts are now estimating that number could double because of the coronavirus.

More research is needed, but at this time it appears that even after the virus clears, 10 to 30 percent of those who get covid-19 from the coronavirus are remaining sick. They have post-acute sequelae of SARS-CoV-2 infection (PASC), more commonly known as long-haul covid-19.

If the condition persists for more than six months, a person with long-haul covid-19 could be eligible for an ME/CFS diagnosis, because the two groups share key symptoms: unrelenting exhaustion not alleviated by rest; debilitating cognitive dysfunction (brain fog); and post-exertional malaise, or collapse. That is when even small amounts of energy output cause a disproportional payback, often landing us in or near bed for unpredictably long spells.

The downturn can last days, weeks, months or years. Yes, years. Or it can be permanent.

The disease ME/CFS can be an invisible disability.

After all, if you are homebound and bedridden you are hidden from sight. Yet, when we do manage to get out, most look healthy. So others can’t tell we are struggling, even if we are barely hanging on.

Over the years, I managed to attend high holiday services — including Rosh Hashanah and Yom Kippur — via audio. It was with another congregation, 100 miles away. The tech is run by a member who, in his real life, is a compassionate disability attorney. Every year I wept my way through those services, so grateful was I to be part of a larger Jewish community.

Yet that was just once a year.

Then along comes a global pandemic. Overnight, my own synagogue, like many others, went virtual.

Just before the pandemic, my father died. I was grateful to be able to attend the Zoom evening services, which included the Mourner’s Kaddish. I felt held. And suddenly I could attend an occasional Zoom Lunch and Learn led by my rabbi. There, I felt educated. Yet, best of all, I can now regularly attend Saturday’s online Shabbat services. There, I feel fulfilled.

As the general population has recently learned, and as homebound people have long known, isolation can be heartbreakingly hard. So imagine how much of a breath of fresh air it has been to join my congregation. Insta-community! Being part of live Jewish gatherings has been good for me and my sometimes socially-starved soul.

Of course I’m thrilled a vaccine is here. I hope life for most healthy folks will soon get back to normal. Thank goodness.

Yet when the rest of the world goes off videoconferencing, those of us who live with health challenges and disabilities may not be able to join back in. Not at our synagogues, churches or mosques. Not at PTA meetings, Thanksgiving dinners or birthday parties.

This past Passover is a good example.

Because of my disability, I’ve missed most Seders. Then this year, to my delight, I attended two, virtually, just like everyone else. At the end of each, the Seder leaders said they hoped we would be together again next year, in person. My heart sank; I guess I’ll be missing those.

The truth is, even if I had the strength to get to a gathering in person right now, it still may not be safe for me. Yes, I’m lucky enough to be double vaccinated. But I’m unlucky enough to have a chronic illness that makes my immune system wacky. Research suggests that there is an immune system dysfunction in a subset of individuals with ME/CFS.

So right now, it’s a big unknown whether the vaccine will protect me: Will it prompt my body to make the much-needed antibodies? Without antibodies, a future infection is possible.

It’s not quite time for me to let down my guard.

I recently shared with my rabbi that I would welcome virtual participation continuing after the pandemic. He agreed, saying he also wants the inclusivity experienced during covid-19 to continue, and that the shul’s board is already exploring options.

Plus, not one to miss a teachable moment, he’s now taking the lead on another project: He is organizing, with me and another disabled congregant, a Jewish Disability Awareness and Inclusion program that our entire congregation is welcome to attend — virtually, of course.

Looking at the larger picture, virtual participation at my shul is about embracing diversity, access, inclusion, disability rights, social justice and, yes, tikkun olam.

On a personal level, our new videoconferencing existence has expanded the world for me. I am grateful that after many years of membership, I now have an opportunity to experience my Jewish community firsthand.

Rivka Solomon is a Massachusetts writer and health justice advocate. She was recently profiled on the PBS NewsHour. She is on Twitter at @RivkaTweets. For more on ME/CFS go to millionsmissing.meaction.net.

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