The author in a selfie from two days ago.
Good afternoon. This is Jonathan Spira, director of research at the Center for Long Covid Research, reporting. Here now a special pandemic report on its 1,499th day.
THE LEDE
‘Whoever Saves a Single Life is Considered to Have Saved the Whole World’
On Tuesday, the I wrote that we had been forced to discontinue updates of our Global Daily Statistics data. On Wednesday, I took a mental health day.
Now it’s Thursday and I’m back but I wanted to reflect on the change and provide a path forward… for all of us.
I began my career as a Covid and then Long Covid researcher quite by accident. As many of you know, I’m an historian by training and my dissertation was “Religious Freedom in the Habsburg Hereditary Lands During the Enlightenment,” written at the Ludwig-Maximilians Universität München. I somehow morphed into a management consultant due to the poor timing of my birth, leaving me ready to seek a tenure track position at a prestigious university in Central European history. Except, as my advisor put it, everyone in those positions was young and healthy, although he helpfully pointed out that arsenic could help open one or two spots up if need be. I do hope he was kidding.
Then I went on to serve as the chief analyst at a think tank studying the problem of Information Overload, where I gained some small degree of fame – or perhaps infamy – opinions differ – as having been the first person to monetize the cost of Information Overload. Do this for over a dozen years and you’ll get overloaded, too and we pivoted (as people are wont to say) into the content biz, even having a very modest online magazine focusing on travel and lifestyle. That was great until early 2020 and I needn’t explain to this audience why.
When I look back, I can find small bits and pieces I wrote about a mysterious virus in Wuhan in late 2019 but it was in early 2020 when headlines were more along the lines of, “World Global Air Cancels 2.5 Million Flights” than anything else so I began to study exactly what was happening in a more quantitative manner and realized that what was being published wasn’t intelligible by non-epidemiologists. I therefore began obsessively compiling hundreds of various statistics and distilling them into a few dozen indicators that I began to publish, at first under a pseudonym since it wasn’t really my regular gig.
Then it was my regular gig and began to assume far greater import than I had imagined, both to thousands of readers as well as to myself. Admittedly I got one thing wrong: I figured it would be my gig for maybe three months at the most. And boy, was I wrong.
Einstein famously commented that the definition of insanity is doing the same thing over and over and expecting different results. I’m not sure what I expected each morning when I woke up but the complexity of making sense of it all had become an obsession and it fulfilled a need for readers across the globe. Some e-mailed me asking what they could do and I felt powerless to even offer up a response better than, “I really do not know, I’m so sorry.”
At first, I cried as I incremented up the death toll from under a dozen across the globe to a few hundred and then a few thousand. The patient count zoomed up even higher of course. I wondered who they were, and I volunteered to become vice president of Project Wingman USA, an initiative that opened lounges for frontline workers at multiple hospitals in New York City. We staffed those lounges with furloughed flight attendants and obtained donations of food that was a vast improvement over standard hospital cafeteria fare. The flight attendants were there not only coffee or tea but a friendly face to talk to, a shoulder to lean on.
As more and more people read the Brief, we covered stories ranging from the horrors of reading of cities with bodies being left on sidewalks to hospital morgues in New York City running out of space and having to bring in refrigerated trucks as the pandemic overwhelmed the network of organizations to process the dead. We covered news of the first inoculations against Covid-19 and a promise that the mysterious virus would be vanquished by the Fourth of July.
That prognostication was about as off as mine concerning this being a three-month gig.
Going back to the discontinuation of Covid data sources en masse, I did feel as if the tap had been suddenly shut off leaving me a worker without tools, but there’s still a tremendous amount of news on Covid and Long Covid to report, even as we look at the pandemic through a rear-view mirror in many cases.
Yes, data reporting has sputtered out and we are now at the point where it is simply not feasible to provide statistically valid Covid case data on a global scale, and I hope that the number of cases and especially of deaths never returns to the heights we saw in my and your lifetimes.
However, the virus gave me a gift of sorts. Long Covid sucks, to be honest, it’s robbed me of so much energy and took away almost a year of my life when before I managed to diagnose myself. While I at first began to give up hope and fall apart, I realized that wasn’t at all going to have a happy ending. Even though I despaired, I never stopped researching what was going on in my body, even when doctors shrugged more parts of their bodies than just their shoulders. But once I pinned the tail on the Long Covid donkey, I had at least a goal, perhaps a Herculean one, but a goal nonetheless, namely to find ways of ridding myself of the scourge.
I haven’t yet completely accomplished this but the success I have enjoyed so far in uncovering appropriate therapies that have given me at least a 70% semblance of my life back, I realized why I was here, and it was a phrase I had grown up with, namely תִּיקּוּן עוֹלָם. Tikkun Olam means “repairing [and improving] the world,” and if an historian whose only medical training was being part of a family with a serious hereditary chronic disease could figure out what to do for Long Covid before most physicians, I had an obligation to open up a dialogue with other Long Covid patients in that vein.
We learn in the Talmud, specifically Sanhedrin 37A: “Whoever saves a single life is considered by scripture to have saved the whole world.”
That’s what led me to create the Center for Long Covid Research. With that came the Long Covid Patient Peer Counseling Phone Line: The HOPELINE, which stands for “ Helping Others Through Peer Counseling and Education,” because we Long Covid patients, as a cohort, aren’t ones to gather in support groups in synagogue and church basements. We also created the Long Covid Art Project, using the National AIDS Quilt as an inspiration, which we will launch in May, asking Long Covid patients to use art (a painting, drawing, photograph, musical composition, or other form of art) to express that individual’s feelings about having the condition.
My typical response is that my drawing would resemble Edvard Munch’s “The Scream” or Macaulay Culkin’s now famous face and scream in the movie “Home Alone.”
There continue to be at least 250,000 new Covid cases reported each week across the globe and many more go unreported. In addition, while the global death toll has been on the decline over the past three months, the previous 28-day death toll has ranged between 4,000 and 5,000.
As I noted on Tuesday, we are developing potential new and authoritative sources that we will present once they have been properly vetted, so stay tuned to this space. In the meantime, our Long Covid and pandemic coverage will remain much the same and we will return with our normal programming tomorrow.
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The Coronavirus Daily News Brief is a publication of the Center for Long Covid Research. www.longcov.org
If you have Long Covid and need to talk to someone, call the Long Covid Patient Peer Counseling Phone Line, or HOPELINE. The HOPELINE is our free, confidential support and information service.
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