By David Tuller, DrPH
*This is a crowdfunding month at UC Berkeley. If you’d like to support my work, the link is here.
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Julie Rehmeyer explores a friend’s death in New York Times’ Modern Love column
It is hard to imagine having to cope with the aftermath of someone dying of suicide in your home. But that was the task confronting Julie Rehmeyer, a writer and longtime ME/CFS patient who has eloquently explored her illness in a book and, more recently, in a Substack newsletter. Her friend, Beth Mazur, had been visiting her for five days.
Beth was a dedicated advocate for people with ME/CFS. She was a co-founder of #MEAction, which popularized the annual “Millions Missing” campaign and has spawned chapters in multiple countries. For years, she kept up the fight for greater awareness and research funding. When I began crowdfunding for this project, she offered valuable help and guidance. In the end, she decided it was time to leave her suffering behind.
Now, for The New York Times’ Modern Love column, Julie has written a beautiful account of the role played by love and understanding between those on both sides of this terribly sad event. The headline: “May I End My Life With You?” The subhead: “My friend made the weightiest decision possible while staying at my home. I struggle with what it meant.”
Her’s a short excerpt:
“If my friend Beth Mazur had asked, ‘May I end my life while I’m visiting you?’ I would have said no and done everything I could to stop her. But she didn’t ask…
“We talked about all M.E. had taken from us. From her, it had stolen her career, her imagined children, snowboarding, often even the strength to get out of bed. But the worst theft was her brilliant technologist’s mind. She told me she constantly felt concussed, as if every attempt to engage with the world required smashing her fragile brain through a wall of concrete.
“‘I feel like I don’t really exist,’ she said, her voice small. Her cognitive dysfunction didn’t show — from the outside, her brilliance still blazed — but that invisibility deepened her frustration. She had tried hundreds of treatments, each demanding research, money, risk, sometimes travel, always the resummoning of hope. None had restored her injured brain.”
A heartbreaking read. Best to grab a tissue.
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A moving Substack account of life with Long COVID
The Substack platform allows anyone to publish their own “newsletter.” That means sometimes you can come across pieces by folks you’ve never heard of that offer fresh and well-written perspectives on whatever any topic of interest, including chronic illness.
Here is what Substacker Fred Rossi, whose newsletter is called Center Left, writes about himself: “What if your body ran like a failing economy? Shrinking reserves. Impossible trade-offs. I write about Long Covid and ME/CFS with brutal honesty and zero fluff. Also: Star Wars, comics, cats, and Penguins goals.” (I know nothing about sports; I just googled and found out that the Penguins are an ice hockey team in Pittsburgh.)
I haven’t been aware of him before, but I really appreciated a recent post called “The Debt Came Due: Notes From a Crash.” Rossi’s writing is evocative as well as informative. Here he is describing a bout of post-exertional malaise:
“Now I cannot stay upright. The fatigue is a physical weight, not a feeling of sleepiness but something more like gravity has been turned up and my body is the only thing that hasn’t gotten the memo. Screens worsen my symptoms. Sound is exhausting. Thinking is exhausting. Being upright is exhausting. I lie flat and stare at the ceiling, which has become a kind of companion these past weeks…
“I’ve moved to the first floor. The upstairs where I used to sleep, where I used to have a life that spread itself across multiple rooms, is now effectively another country. I don’t go there. The energy cost of stairs is a luxury I cannot afford. My world has compressed to the dimensions of a single level of a house, and within that level, primarily to the bed.”
He also discusses his feeling of isolation and his efforts to reach others through writing:
“The isolation is a specific kind of pain. People see me and I look like myself. I sound like myself. So they expect myself. And when I tell them what I am actually experiencing, the look on their faces, the polite nod, the careful pivot to a different subject, communicates everything about the gap between what I can describe and what they can absorb. I have tried to close that gap with writing. The writing reaches others in the community, which is one of the few sources of meaning available to me in this bed. But closing the gap with the people in my physical life, the ones who love me and mean well and still cannot quite hold the reality of this illness, remains one of the loneliest parts of all of it.”
I’ll definitely be looking out for future posts from Rossi.
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Time magazine on “post-viral” symptoms
On March 25th, Time posted an article called “Do You Have Unexplained Symptoms? They Might Be Post-Viral.” The piece, by reporter Veronique Greenwood, provides a brief overview of the range of possible downstream consequences of an acute viral infection. While scientists have long known about this phenomenon, it appears to have come as a surprise to the rest of the world—including to health care professionals, as the article notes.
Here’s the opening:
“The common wisdom about catching a virus is that in a few days—a few weeks, tops—everything will be back to normal. And in many cases, that’s true.
“But as the flood of Long COVID cases during the pandemic demonstrated, sometimes it can take much, much longer. Additionally, doctors and scientists are realizing that post-viral symptoms can be more subtle than the crushing fatigue and brain fog commonly seen in Long COVID and other post-acute infection syndromes, as these conditions are known. You might even have had a conversation with your own physician about a perplexing symptom where the doctor, at a loss to explain it, pins it on some mystery virus from which you have long since recovered.
“With the rise of new tools in molecular biology, it’s becoming clear that viruses and other pathogens can remain in the body or otherwise affect its workings for a surprisingly long time. “Doctors often use this as a ‘get out of jail free’ card,” admits Dr. Chris Smith, a virologist at Addenbrooke’s Hospital in the U.K. and host of the Naked Scientists podcast. But, he continues, “we are beginning to realize that there is this whole world out there that we had absolutely no insight into.”
Nothing groundbreaking, but it’s good to see the overall issue getting more attention.