Strange pangs first struck after a mere 20-minute ride on the stationary bike at the gym. Then I couldn’t sleep through the night, with a fiery, tingly feeling under my skin; my midsection and fingertips grew numb. One morning I woke up slurring my words out the left side of my mouth, like Bill Murray in Caddyshack.
Three visits to the emergency room and one spinal tap later, an astute doctor at Beth Israel Deaconess Medical Center scribbled the diagnosis on the whiteboard of my hospital room: Guillain-Barré Syndrome, a rare neurological disorder where the body attacks its own peripheral nervous system. I was in for several more days of anguish, while fresh antibodies injected intravenously tried to call off the friendly fire. And then months of rehab, taking baby steps with a walker, and otherwise spending long hours flat on my back.
A largely obscure affliction written about mostly in medical journals, GBS might ring a bell in this second year of the pandemic. In July, the Food and Drug Administration added a warning to Johnson & Johnson’s COVID vaccine, suggesting it appeared to trigger this unintended autoimmune response in some people. About 100 of the roughly 12.8 million or so who had received the vaccine developed GBS afterward — such a small number that the FDA said the benefits of the vaccine outweigh any risks — but I was part of that extremely unlucky cohort. I got the shot at Boston Medical Center on April 3, and felt the onset of symptoms two weeks later.
GBS is an extraordinary physical and mental challenge, afflicting up to 6,000 people annually in the United States for reasons that are still not fully understood. Though I wasn’t alone, my journey felt particularly lonely. I’m normally a serial social media poster yet I’ve been reluctant to talk about my experience because the dialogue about vaccines has become so super-charged and twisted. With nearly 1 in 4 eligible Americans still not getting the vaccine, I dared not add to the fray.
I’m telling my story now to acknowledge this potential side effect — but also to encourage a more sober risk assessment for those still hesitating. As of this summer, 0.0008 percent of people had contracted GBS after getting the J&J shot, or roughly 1 out of 128,000 people. The chances of something bad happening looms vastly larger every time we get behind the wheel of a car.
This isn’t easy for me to say. Even as I get around with a cane, I still recommend getting the vaccine.
The risk of getting COVID, which has so far led to more than 720,000 deaths in the US alone, is far greater than any kind of side effect, and the vaccines are saving lives. So while at first I was pretty angry, the better outcome for everybody is to take the opportunity to understand more about how our bodies work, in the context of this horrible pandemic and quite possibly future ones.
On the day in July that the FDA announced its warning about Guillain-Barré Syndrome, I sobbed beside my trainer at Spaulding, feeling so unlucky and very much alone.
Guillain-Barré Syndrome, named for two French neurologists who observed weakness and “flaccid paralysis” in World War I soldiers, can be set off by bacteria, bad food, or infection from a virus such as influenza or Zika — and from the coronavirus itself, as recent studies show.
GBS is also a known risk associated with vaccines, including those for swine flu back in the 1970s, seasonal flu, rabies — and now, Johnson & Johnson’s Janssen viral vector COVID vaccine. No one knows precisely how things go haywire, but a plausible theory is that while my antibodies quickly recognized the coronavirus spike protein represented by the vaccine, a few rogue soldiers looked around further and decided that something similar appeared to be on the myelin sheaths that coat my nerves like insulation around an electrical wire. So, they started attacking. And boy, did they. I remember thinking, How astonishing that my body would betray itself in this way. But I was also impressed with the commitment. My immune system rigorously executed what it thought were orders to take the hill.
Before I was completely in tatters — left unchecked, GBS can put patients in the ICU and on ventilators, and be life-threatening in rare instances — doctors administered three treatments for what turned out to be my stubborn case. The first was the infusion of fresh antibodies through immunoglobulin therapy, known as IVIg; the second was plasmapheresis, a more-thorough oil change where all the rogue antibodies were sucked out through a tube in my neck and replaced with synthetic plasma. Finally, I was given steroids to tamp down the inflammation that lingered like smoldering fires after the initial bomb blast.
Much damage was done, however — not only to those myelin sheaths but some of the underlying nerves themselves. Fortunately, in another wonderment of the human body, the extraordinary network that is the peripheral nervous system — branching out around the midsection, down arms to hands, and from legs to feet — is designed to repair itself. It just takes a long time — the pace of regrowth is just 1 millimeter per day, I was told. And as that happens, the brain, muscles, and nerves have to learn to work together again, in a kind of factory reset.
For this task I was discharged to Spaulding Rehabilitation Hospital Boston in Charlestown, where I spent hours in the gym overlooking Boston Harbor, feeling like a toddler and learning to walk all over again. I was outfitted with a walker just like the one my 90-year-old mother uses (we traded tips on the best pouch to get for the front). Impossibly fit trainers guided me through a rigorous physical and occupational therapy program: up and down practice stairs, in and out of a practice car, exercises on mats, timed tests adorning racks with spring-loaded clips. To help bring back sensory function and fine motor skills, they had me pick up small objects in a special machine that whirled shredded corn husks around inside a clear box, almost like a carnival game.
I would get back to my room and collapse from exhaustion and disbelief. Prior to all this, I was a typical fiftysomething weekend warrior, playing paddle tennis and squash, occasionally teeing off, ever hopeful, for nine holes of golf. In the depths of the pandemic I cherished long walks with my dog. But weeks and weeks at Beth Israel and at Spaulding left me feeling beaten up and weak. There’s nothing quite like not being able to exercise to make it clear how essential it is.
Meanwhile, my family life was similarly upended. My wife, Tina Cassidy, absorbed all the stresses and strains of caretaker in chief — on top of the already enormous demands of her busy professional life. As time went on, missed gatherings piled up — Mother’s Day, my wife’s birthday, my oldest son’s birthday. For Father’s Day, my sons brought burritos into a fluorescent-lit conference room at Spaulding. I watched the fireworks over Chelsea on the Fourth of July. Counting the days until discharge, I wondered if my dog would even recognize me.
The mental challenge has been formidable. I celebrate triumphs like graduating from a walker to a cane, but also periodically break down in tears. A majority of GBS patients fully recover within a year — a like-it-never-happened prospect that makes this experience all the more bizarre. Yet, the rehabilitation can be agonizingly slow, and there’s no guarantee there won’t be lingering deficits. My hands and feet remain numb and tingly.
Since coming home in July — the face-licking reunion made it clear that Dusty, our slightly unhinged Norfolk terrier, unconditionally welcomed my return — I have been rendered a particularly useless husband, unable to do the laundry in the basement or make the bed with much prowess or haul a tote bag upstairs. I haven’t been in a grocery store since April.
Meanwhile, long-ago scheduled events — surely I’ll be better by November! — keep getting shelved. I was all set to leave for the COP26 UN climate change summit in Glasgow at the end of this month. But getting around airports and a big conference center? Not happening. Much as I strive not to let this define me, I’m reminded daily of all the things I used to do that I can’t do now.
In every respect, I have longed to talk about it all. Texting with my doctor friends and my brother, a neurologist, only went so far. What I really wanted to do was share this entire experience on Facebook.
I wanted to say how grateful I was, to be in the medical epicenter of Boston, for my understanding employer, for the unflinching coverage of my Blue Cross health insurance. For Spaulding and its motto “Find Your Strength,” and all the people around me in that gym, working so hard every day to get better. For friends and family, who don’t get expressions of appreciation from me nearly enough.
As a journalist, I was also fascinated, medically speaking. I spoke with GBS survivors — for a rare disorder, a lot of people seem to know someone who had it — and that only fueled my curiosity about the amazing, and fraught, immune system within all of us.
Yet, it was impossible to see how my experience would fit into any kind of reasonable conversation. Skeptics would have their fears confirmed, further fueling distrust, if not hysteria. A personal account of a bona fide side effect connected to the vaccine, sitting there online right alongside false claims of infertility and implanted microchips. More fodder for Internet searches that anti-vax forces have so successfully manipulated to control what happens when average citizens go to do research.
In a public health context, talking about my condition — even with some close friends, who were all too ready to heap blame on the vaccine — became an excruciating exercise. On the day in July that the FDA announced its warning about GBS, I sobbed beside my trainer at Spaulding, feeling so unlucky and very much alone. Then, I watched and read with rapt attention how the media handled the story, and sensed some reticence similar to my own. Here was this awful thing that happens — but it was more important, the authors and announcers quickly said, to beat COVID. I believe everyone should be vaccinated, but the way experts quickly pivoted away from GBS still made me feel overlooked as I struggled to recover.
My experience has given me even more sympathy for people who worry about vaccine side effects — including people in communities of color who have reason to distrust the medical system — and I have a suggestion for another way: Let’s be more open about it.
I understand why the medical establishment repeats the mantra that the COVID vaccines are safe and effective, because, in terms of the numbers, they are — amazingly so. In disciplined messaging, it makes sense not to raise the slightest doubt, precisely because the risks are so infinitesimal and the numbers of people left to vaccinate still so high.
But I’m not sure it’s productive to downplay anything at this point, either. In an otherwise excellent essay in The New Yorker about how undangerous the vaccines are, the author refers to GBS as something that merely “causes weakness.’’ I’ll show you weakness, I thought. I read that lying down, needing a rest after a trip to the bathroom. Some recent news stories about vaccine side effects cited blood clotting in women — an even rarer occurrence noted by the FDA — but said nothing of GBS.
A questions-answered piece posted by the Cleveland Clinic is draped with all kinds of hedges and qualifications, including that “milder cases of GBS may go undiagnosed, never causing enough concern to warrant a doctor’s visit.” That certainly hasn’t been my experience.
Doctors talk privately about the cost of doing business: the tiny fraction of oral polio vaccine doses that triggered the disease itself among children, or the potentially fatal cases of heart inflammation that can occur in teens after receiving the mRNA COVID vaccines today. Awful across the board, and one death is one too many. The low incidence of things going badly, however, does not suggest anybody is recklessly playing with fire.
There must be a way to get people to think about risk without making them feel like they’re rolling the dice — any more than they do when they board a plane, which never carries a guarantee that it will land safely 100 percent of the time.
In my self-imposed social media quarantine, I look back on the other things I found to focus on. I interviewed the nurses about how they got to work, and entertained them — sort of — with my OK-boomer rejoinders such as “That would be salutary.” I regaled them about covering the Charles Stuart murder case and the Gardner Museum heist, which occurred before some of them were born. I stammered in disbelief when one assistant had no idea who Neil Young was.
I made playlists on Spotify, trying not to embarrass myself with too much Squeeze and Supertramp. Consistently up awake at 4 in the morning, I rekindled an e-mail correspondence with my sister, and watched Boston Harbor get to work in the predawn glow. I was elected to Town Meeting in Brookline, learning of my victory while getting my nightly blood-thinning injection. I watched Forrest Gump for what had to be the 30th time.
But enough is enough. A significant number of people got Guillain-Barré Syndrome after getting the Johnson & Johnson shot. Let’s talk about that and understand what happens medically, and the actual risks, however small.
Interviews and polls show that many Americans hesitating on the vaccines are worried about what’s in them, how they work, and possible side effects — not so much the conspiracy theories. Why not address the issue of possible adverse reactions more head-on? The seeming reluctance to say much about that could backfire. Justifiably worried about bad actors who will hijack the discussion, the public health establishment could end up making the genuinely hesitant wonder if they’re hiding something.
We’re going to need to get this right. There will be future deadly pathogens and future vaccines. We will need to survive in a code-red world, whether it’s with public health interventions or making changes in our behavior to confront climate change. It’s unfortunate that the platforms of the information age — and the malicious people who weaponize them to sow doubt and mistrust — can’t serve us more intelligently and humanely. But that’s not reason enough to give up on conveying information so that it can be more calmly interpreted.
Everything at issue here — a pandemic, vaccines, hospitalizations, death — is of course profoundly emotional, and emotions, quite understandably, permeate decision making. A richer, more nuanced discourse, however, can at least get started by remembering that people generally react better when they’re not lectured, or left feeling like their concerns have been glossed over. They can handle the truth.
Anthony Flint, a Boston Globe reporter from 1989 to 2005, is a senior fellow at the Lincoln Institute of Land Policy in Cambridge. Send comments to firstname.lastname@example.org.
Flint will speak about his experience at TEDxBoston, a free, in-person event with 50-plus participants in Boston on November 4. For more information and to register (space is limited) visit https://tedxbeaconstreet.com/quinn-house-2021-schedule/