On the Guilty Pleasures of Computer Solitaire: A Defiant Act of Independence – By Ben Mattlin
July 25, 2017
These words you’re reading now are a kind of small miracle. Even if you don’t like my writing, the fact that they’re committed in ink (well, pixels) is nothing less than the result of a series of miraculous events. For you see, I can’t actually write letters in the conventional sense.
I used to be able to, when I was in school, though even then my method was unorthodox. That’s because I was born with a form of spinal muscular atrophy (SMA), a congenital neuromuscular weakness. “I can’t walk” is how I used to explain it when nosy strangers inquired about my wheelchair, or more precisely asked “What’s wrong with you?” But actually, SMA is so much more. Now I sometimes describe myself as “SMA quadriplegic.” Meaning I can’t use my hands much either.
If that sounds like a plea for pity, it shouldn’t. It’s just a fact. Plus, limitations can beget ingenuity. For instance, as a kid I would hold a pen in one hand—rarely a pencil, because I couldn’t press hard enough to make my marks legible—and slowly pull a sheet of paper across the table with my other hand so I could write or draw. By my early 30s, however, my atrophy had progressed to the point where it is now, where I’m no longer able to hold a pen. Or anything else.
“My mouth still works…”
This hasn’t keep me quiet, though. My mouth still works, and it continues to receive plenty of exercise. SMA affects muscles in strange, seemingly random ways. I can’t open my pie hole very wide—my dental hygienist doubtless deserves a tip for services above and beyond the call of duty—and swallowing often requires concentrated effort. My speaking voice isn’t always intelligible either, depending on how fatigued I feel or how well my lungs are functioning on a particular day.
But none of this stops me from putting words together in my mind and, often, broadcasting them online and in print. For me, the forming of sentences and phrases is a necessity. I don’t mean that in an artistic or figurative sense. I literally depend on being able to give verbal instructions. “Sip of water, please,” or “Push my head to the left a smidge” are examples of the kinds of cues I frequently articulate, since I can’t grab, point, or otherwise gesture.
More than that, though, I also depend on sentence-construction as an expression of freedom. My brain can’t seem to stop making observations, opinions, puns. But not until my tongue and lips move do these ideas and quips and images come alive. Sometimes it’s the feel of the words—their resonance—that registers for me as much as their meaning. It’s the closest I come to understanding dance.
“I was an early adopter of voice-recognition computing…”
Perhaps it’s not surprising, then, that I was an early adopter of voice-recognition computing. Decades before Siri and Alexa, I rushed to acquire the new technology as soon as it became available (read: affordable). For me, it was the stuff of dreams. Back then, as I was losing the ability to scribble longhand, I had to extemporize by, first, typing one letter at a time with a single finger and then, for better leverage, manipulating an unsharpened pencil or other lightweight stick to control a computer keyboard just enough to cut and paste individual letters and letter combinations. If I was in a hurry, I’d pay an assistant to take dictation or transcribe from a tape recorder, but then I’d still have to do edits and rewrites on the computer. I never tried a mouthstick, like other quadriplegics I know, but that probably would’ve been next if technology hadn’t advanced.
This grueling process gave me a kind of blue-collar pride in my output, the result of laboriously entering data like laying brick after brick. It also forced an economy upon my elocution that would’ve made Strunk and White * proud!
I tend to take to new technology readily. Folks like me are accustomed to relying on machinery. From motorized wheelchairs to high-tech breathing-assistance devices to ramp-equipped vans and adaptive switches of all kinds, we rely on these to enable basic functions of living—mobility, breathing, interacting. You get the idea.
Beyond the medical and biotech wonders, however, I’m often most grateful for the small marvels that simply make life more fun, more pleasant, more interesting.
“Computer Solitaire grants me seemingly endless delight…”
For instance, something as simple as computer Solitaire grants me seemingly endless delight. With my increased atrophy, I had all but forgotten about the games I’d enjoyed in my more agile youth. Until I got online. And my first lesson in how to use a computer mouse, more than 25 years ago, was to play basic Solitaire.
I still play it. It’s changed, of course, with each new upgrade of operating system. But for me it still provides an enjoyable and much needed quick break from the day’s stresses. Plus I know that, by indulging, I am in reality celebrating an awesome achievement of technology and independence.
Yes, there are other and perhaps better online diversions these days. Netflix and e-books leap to mind. But there’s something visceral about the pleasure of using my adaptive tools to move and shuffle virtual cards. Maybe it’s like a kid playing a driving simulation arcade game.
Someone once suggested that computer use is a stress reducer for me. Perhaps. For many people, computers cause stress. I’ve known that, too. But mostly I do love my computer time. That’s made me the family IT guy. My untrained know-how is just my stubborn willingness to sit still for hours until a problem is solved. And I never have to stretch my legs!
In truth, my seeming determination to let no software glitch go unresolved springs organically from my innate survival instincts. As my disability progresses, and my physical abilities regress, it often takes a measure of stubborn self-discipline just to get through the day. Not choking when I swallow, say, or consciously parceling out sufficient effort to navigate other quotidian activities, such as giving clear verbal instructions to my helpers if, for example, my nose itches: is it the left side or the right? High or low?
There are days when I have to will myself to get out of bed and face whatever challenges arise. But the alternative leaves so little joy.
And I always know that, if the day goes badly, I can give in to a quick game (or three) of Spider or Yukon Solitaire.
* The Elements of Style, by William Strunk Jr. and E.B. White, is considered the definitive guide to English language writing style
Ben Mattlin, a Los Angeles-based freelance writer and frequent contributor to Financial Advisor magazine, is the author of MIRACLE BOY GROWS UP and the upcoming IN SICKNESS AND IN HEALTH. His work has appeared in The New York Times, Los Angeles Times, Washington Post, Chicago Tribune, and USA Today, and has been broadcast on NPR’s “Morning Edition.”
Thanks for the great article. As a spinal cord injury survival i’ve learn a lot.