“The funny thing about Mike,” my best friend said, “is that whenever he gets drunk, he talks about qigong.”
It’s true. A can and a half of Maryland cider, and I was actually standing next to the table, flapping my arms.
“Okay, okay.” After I sat down, embarrassed, the host of the dinner closed her eyes and recited from memory. “When I was 21 I got sick with a mysterious illness. Twenty years later, my life was saved by a rare form of acupuncture.”
It’s lovely but a little painful to be known really well, right? I do talk about Eastern energy-based medicine constantly, sober as well as drunk. But gimme a break; if you suddenly learned about a whole new aspect of reality, which was apparently real, and worked, whether you believe in it or not, you’d feel compelled to share.
“Guys! I can feel plants!”
So that’s one reason I’m starting this newsletter. Here are some others:
I’m writing this because I never looked sick. Even when I was near death, I didn’t look like I was DYING-dying. I was just tired, very tired, and had dark circles under my eyes. And I was thin. Skeletal. Which made some people say “you looked great!”
I’m writing this because it’s a story only I can tell. I have been a professional writer since 1989 , and as part of the problem I say: enough with the words everybody, okay? Especially in this era of AI, every writer, if they wish to retain their Decent Human card, has to ask themselves as they sit down to write, “Is this really necessary? And am I the person to write it?” I am the only person who can tell the story of how I got sick, and how I got well.
Well, well-ish. I still don’t live like you do. By which I mean to say, I hope none of you have to live like me.
I’m writing this because it might help others. That’s where the “necessary” part comes in. I want to get into the real stinky, gloppy, crampy, clammy nitty-gritty details, as best as I can remember them, so that similarly afflicted readers have things to try. If not specifics, generalities. If not physical therapies, mental strategies. So much of getting well is staying sane while you’re waiting.
I’m writing this because being chronically ill is so lonely. When you get sick, you become 1) boring and 2) scary. Even the most active imagination becomes tedious after five years spent on the couch or in the bathroom. There are workarounds, if people love you. My friend Jerry and I played a lot of cards. My friend Jon and I wrote New Yorker pieces together. My wife Kate and I watched a lot of movies. My friend Laura and I Zoom a lot. But even if you can cobble together sufficient shared experiences to keep some friendships going, 90% of the people in your life, leave. Because you are scary. A sick person reminds people of a whole bunch of stuff that they’d rather not think about.
Finally, I’m writing this because I could get sick again. I am nearly 57, and have put some hard miles on this body. I want to tell my story, as fully as I can bear to, while I’m still strong enough to do it. It’s kinda important to me to say that this not the story I wanted to tell—this is nothing like the life I wanted to have—but I am moving forward here with a kind of blind trust that there is some benefit in telling it. I expect that the things that walked me back from the brink, and now give me the strength to write will continue to work. But they may not. I hope that the people who treat me continue to live. They may not. I can’t control any of this. The only thing I can control is, when I stare Death in the face again, I’ll have said what I needed to say.
The story, in its briefest form, is this: in February 1991, while finishing my Senior year at Yale, I got a flu which wouldn’t go away. I’d had splendid health up until then — my body had never been easy, due to having cerebral palsy, but it had been dependable, resilient, utterly predictable. Which made this lingering illness alarming. Hearing my plight, my girlfriend’s father (an extremely accomplished and well-respected Art Historian but not, I repeat, not, any kind of medical doctor) offered me a half-course of Cipro.
“Take this,” he said to me in his study, handing me a foil packet as he swirled a tumbler of Maker’s Mark in his other hand. “These little buggers will knock out anything.”
My headache and sniffles did indeed go away. As did—strangely—some of my hair and much of my eyebrows. My mouth tasted different, like pennies, like blood. When I smelled myself, I got a whiff of ammonia. But most of all I had, for the first time in my life, a violent gastrointestinal reaction to dairy. It was strange, because until then I’d eaten anything and everything with relish; the mere idea that a human body could not digest any type of “people food” was almost laughable to me. Within six months this violent reaction had spread to wheat and nuts. Within a year, I could not tolerate dairy, wheat, nuts, alcohol, caffeine, and anything with too much fat in it, from ribeye steaks to coconut milk. This list would grow over the years so that by age 42, I was down to basically five foods. Everything else raced through me. “It doesn’t even have tooth-marks,” I used to say.
By 25, my diarrhea was so unpredictable and so constant that leaving my house required hours of prep. Four blocks from my front door felt exotic. As my illness progressed I of course began seeing all sorts of doctors—general practitioners, gastroenterologists, therapists…even psychiatrists, suggested by people who thought it was “all in my head.” Sometimes I agreed with them; it was certainly more comforting than the alternative.
At the same time, I attempted to launch my career, which went better than anyone had a right to expect. By my late 20s, I’d written humor for every major magazine and newspaper in America, and lots of jokes for Saturday Night Live. But showbiz is the ultimate “who you know” business, so there is a hard limit to how far you can rise if you can’t leave your house. Maybe every business is risky and unkind, but comedy seemed doubly so.
I lived in some great neighborhoods—pre-development Capitol Hill in Seattle, my leafy and adored West Village. I moved to Chicago, narrowly missing 9/11 (thank God). I got married. I had a great cat. Eventually I wrote a worldwide bestseller.
But by the time my wife Kate and I moved to Santa Monica in 2005, my life wasn’t really mine anymore. We’d moved West so Kate could go to film school, but also I was so skinny that the Chicago winters had become just too much to bear. Since there were no calories inside me, every morning before work, I had to soak for an hour in a scalding tub to jumpstart my body. Santa Monica’s warm weather—and the money to pay for it—had become a necessity.
My career died as soon as we moved out here, and my stress level skyrocketed. Suddenly, ten years of professional momentum vanished; nothing I tried worked, and with every project, the stakes grew higher. A regular job was impossible, and I was spending life energy I couldn’t replace on longshots. Santa Monica offered lots of “alternative medicine,” but those proved to be more entertainment—another kind of conspicuous consumption—than treatments. On the other hand, my guy at UCLA—the compassionate and brilliant head of the gastroeterology department—didn’t have any ideas, either. “I can tell you what happened, but I don’t have a diagnosis.” I couldn’t even find anyone else with my precise symptoms on message boards like IBSgroup.org.
I’ll explore all of this more in this blog.
In 2011, 21 years into my Mystery Illness, I could feel myself throwing in the towel. I wasn’t angry anymore or sad, and I wasn’t scared either, I was just calmly fading away—that’s how I knew it wasn’t anxiety but the Big Enchilada, the coming of death. I ate as much as I could, whenever I could, squirting semi-legal cannabis tincture on my gums to reduce bowel inflammation and a nervous system constantly throwing pain into my gut. But I was collapsing, and I knew it. I didn’t tell anybody—either through shame or stoicism or a desire to protect what little dignity I had left, I kept my illness to myself as much as possible.
At 42, when I should’ve been at the height of my powers, writing books and running magazines and making movies and TV shows, I was dying, nobody could stop it, and nobody even knew why.
This is the old professional writer’s trick called “the cliffhanger.” My next post will begin with how I found what keeps me alive, and I hope you’ll join me for that. What ended up working shocked the heck out of me. It continues to surprise me to this day.
\Before I go, I want to say one more thing: I am hoping that this blog is read by people who are struggling with their own mystery illnesses, and if it is helpful, feel free to share it, and “sound off,” as they say, “in the comments.” I have a heavy professional workload—I run a print humor magazine— but I will try to engage as best as I am able, and I hope my readers can be an aid and comfort to each other.
See you next time. ◊
MICHAEL GERBER is the Editor & Publisher of The American Bystander, a print humor quarterly that has almost no scatological humor. Brother, he’s lived it.