By David Tuller, DrPH
Michael Alenyikov was the first person I knew with ME, or what was then being called CFIDS—chronic fatigue immune disorder syndrome. We met in the mid-1980s in NY—we were younger then!—and we both moved to San Francisco in the 1990s.
Michael trained as a clinical psychologist but switched his professional focus to writing, focusing on interactive projects for museum displays and other settings. After his diagnosis and move to San Francisco, he turned to writing fiction—albeit slowly, given his health limitations Despite his illness, he has managed to publish two books of short stories.
The first, Ivan and Misha: Stories, was published in 2010 by Northwestern University Press and received stellar reviews. Library Journal praised Alenyikov’s “richly detailed yet straightforward prose” and rated the book as “highly recommended.” Booklist had this to say about it: “Written with sweetness, compassion, and great beauty, this book will have broad appeal to lovers of short fiction, literary writing, and gay fiction.” Ivan and Misha won the 2011 Northern California Book Award for fiction. Last December, Spectrum Books published his second collection, Sorrow’s Drive: A Quartet—also well worth a read.
Michael and I spoke recently about his falling ill with ME, his writing life, and related issues. Here’s what he had to say. (I previously posted comments on writing from authors Alicia Butcher Ehrhardt and Nasim Marie Jafry, whose novels, respectively, are Pride’s Children PURGATORY and The State of Me.)
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I fell ill with M.E. in 1991. After a nightmarish year I received an apparent reprieve and moved from New York City to San Francisco, where I had friends. In late 1993, I relapsed and have never recovered. I have a moderate case; I’ve never not gotten out of bed but I’ve 1000s of days when that’s all I’ve been able to do. I was trained as a clinical psychologist but left the field early, before M.E. struck. I worked for a decade as a writer and content developer in the arcane field of interactive media projects. I had a longing to do creative work, in film, writing, etc. But lacked confidence. For reasons buried, perhaps, in a troubled childhood, I felt I wasn’t entitled to a creative life.
M.E. has been awful but it brought two “gifts”: The first is the wonderful friendships I’ve formed, a few local, many more online, with some amazing people. You know who you are. The second: when I had to stop working and go on disability, I had free time. Not terribly useful time, but I could no longer tell myself I’m too busy to write. It was, as they say, a sh*t-or-get-off-the-pot moment. I nervously took a class with a local writer. My main symptoms are a waxing and waning cognitive impairment (more waxing than waning), severe sleep disturbance, and often paralyzing lack of physical energy. So free time didn’t equal time that could be used daily for writing. (I still dream of spending several hours a day several days a week writing.) But I discovered I both enjoyed writing and that I had a talent for it.
To be clear, when I write that the illness has given me gifts, M.E. takes away every day more than it gives.
Still, the unrelenting symptoms had me convinced I’d never finish any project I started until I saw an amazing career/life counselor who suggested I see The Shawshank Redemption. As it happened, it was playing at a theater near her office. Two prisoners dig an escape tunnel over seven years with a small spoon. The lesson was clear. Every little bit, every sentence, paragraph, page will add up. The key ingredients were patience, perseverance, and sheer stubbornness. I’ve learned it’s okay if I can’t do anything for months because of a crash. I’ll just pick up where I left off. I’ve often quipped that painting water colors would have been easier (apologies to painters reading this who know othewise), given my cognitive problems.
So I’ve been writing fiction since the mid 1990s, always searching for strategies to “trick” my brain into writing mode. At first it was taking class after class. In classes one had the opportunity to hand out 20 pages or so twice during eight sessions. I paid my money and felt obliged to produce something. I lucked onto a writing teacher whose health problems when younger, which had affected their immune system, made them particularly empathetic to my situation. Then I started taking my work to a nearby, affordable, summer writing conference. Again, I’d pay the money and force myself to finish a story to present. These conferences were a physical ordeal but also exciting. By the end of a week of workshops I’d be visualizing my bed while people would tell me how healthy I looked. Again, I’m lucky that I could manage to go but M.E. always makes you pay a price
For a long time now I’ve been part of a writing group in which we spend an hour writing, revising, editing, whatever. We read to each other and give feedback—usually supportive. I’ve trained myself to write for an hour regardless of how I feel. And often I feel truly awful. The first draft of the novel I’m working on now—which I began in 2007!—was written in those 60-minute freewrites. I’m still revising it. A slow process as my symptoms have worsened in recent years.
I’m proud to say I’ve published two books via small, independent presses. My first, a novel, “Ivan and Misha” won several local awards. It took ten years to write and edit. It’s available in print and as an ebook on Amazon and other online sellers. My second and newest book, which took five years to write and seven years to find a publisher, “Sorrow’s Drive: A Quartet,” was released in late 2022. It’s available via Amazon and as a kindle. I’m sorry to say there are no audio versions available at this time. I’ve published many short stories in literary magazines, one of which was nominated for both the Pushcart Prize and the Best American Short Stories series, while another was performed on stage just before the pandemic by San Francisco’s Word for Word theater troupe.
I’ve not written about having M.E. or created a fictional character with M.E. I find it hard to write directly about my life. Making up fictional characters and worlds liberates me from the painful realities of my life with M.E. and before M.E. Of course, as with most fiction writers, my “life experiences” enter my fictional world in disguised form, often in guises I’m only aware of after I’ve finished. As for writing about M.E. other writers with M.E. have done a better job at it than I’d probably manage. In my novel in progress I do have a character who may have M.E. but I’m struggling with it as the novel isn’t about M.E. and it’s not an illness story, per se. But I may yet find a way that I’m happy with. All that said, in “Ivan and Misha” as one reader pointed out, almost every character has some illness of one kind or another. While another reader read it as a series of love stories.
Lastly, I want to say that I realize I’m very lucky that I can manage to write at all. I’ve met so many talented people online with M.E. who can’t even read anymore, who’ve given up lives as artists, writers, professionals, who struggle to parent their children, to be loving spouses, who deal with profound isolation and loss. On my bad days I don’t feel lucky, but when my brain occasionally kicks in, I do. I salute everyone with M.E. for anything you accomplish even if, as I joked with a friend the other day, it’s a day when all I accomplished was getting out of bed three times.