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Disability Blues

Dennis Fox

Voices of Multiple Sclerosis
LaChance Publishing, 2009

(written in 2000)

Emily’s screeching on her recorder this morning fouled my mood even before I got out of bed. Shouting her name three times to quiet her didn’t help. Too wired to sleep, too irritated at my irritation to face the day, I sank back, trying to remember if I had really been more patient two decades ago when I’d first had six-year-olds, or if that memory too is distorted.

The doctors tell me the irritability is probably a multiple sclerosis symptom. The same for the immobilizing fatigue, mild depression, short-term memory loss. My sporadic loss of verbal fluency is also common to MS. But I’m not so sure. These problems come to everyone, my aging friends reassure me. “I forget things all the time,” they say, impatiently. Things fall apart at 50, disabled or not.

I don’t haul out my MRI to insist “Yes, but....”

My wife, working neither of her two jobs today, just asked if I want to go to a movie. With our daughter at school, we could avoid a babysitting fee. “I don’t know,” I mumble unhelpfully. To return from a movie early enough for my nap, I’d have to cut short my writing time. I feel pressured to produce more -- Elizabeth can’t overwork two jobs forever -- and I’m distracted too easily.

As MS goes, I have it easy. Except for increased exhaustion, I haven’t deteriorated since my diagnosis seven years ago. The visual distortions, perhaps originating in the same sputtering part of my brain that caused my initial double vision, don’t last long. There’s no motor impairment yet -- no wheelchair, no cane, no leg numbness or cramping except sometimes in summer heat. Some yoga poses leave me wobbly, but other students wobble too. I can walk on level ground for a couple of miles, just a little slower than I used to.

Often I feel healthy, just confined, pressed for time during my few good hours. To outmaneuver the fatigue, I’ve cut down on most things that wear me out. I don’t walk as far as I’d like. I avoid the sun when it’s past 75 degrees -- during last July’s heat waves I imprisoned myself at home for days at a time, cooled and contented except when I had to pick up Emily at day camp a few sweltering blocks away. I can still choose to push myself, to walk and do yoga in the same day, to stay up too late. The cost is being more drained than usual that day and the next. But I have the choice.

I just wish I could dance for more than a minute or two when Emily turns on the music.

At the university, I heeded my doctor’s suggestion: “Take it easy. Avoid stress. If it was me, I’d quit every committee I was on.” Tenured, I could afford to stop working late every night, and ignored my dropping publication rate. I went to fewer conferences and campus meetings, rejected invitations to collaborate on new projects. When even a reduced teaching load became too difficult, I let that go too, and applied for disability leave.

The irony? As an academic, I had studied disability evaluation. How does the government distinguish someone who can’t work from someone who doesn’t want to? I had worked for the Social Security Administration in the seventies, interviewing applicants for benefits, and later for a state agency, deciding if applicants were legally disabled. So I knew that disability decisions are less certain and more subjective, more political, than any agency would admit. And I knew that asking the state’s university retirement system to declare me “unable to perform my regular job” when I didn’t look disabled, and didn’t always feel disabled, raised certain complexities. At least I didn’t have to meet Social Security’s stricter standard: unable to perform any job at all.

My case dragged on -- a cane would have helped, just for show -- but they finally approved my claim. Otherwise I’d still be trying to fake my way through the workday, becoming the stagnant professor I never wanted to be.

I sometimes get jealous when friends take on new tasks, move to more interesting jobs, make the most of their prime earning years, while I putter around, calling myself a writer, estimating how poor I’ll be when my benefits run out. Back in my twenties, when people like me didn’t put aside money for the future, I supposed I’d work as long as I had to. I didn’t have a fallback plan. Today, there aren’t many job ads for “part-time work, mornings, not much energy required, decent pay.”

I’m glad my condition’s invisible, with my two-hour nap private, my easy limpless walk public. But when an acquaintance wonders why the sabbatical he presumes I’m on is now in its third year, I lack an honest response that doesn’t discomfort both of us.

It was easier writing about disability when I wasn’t disabled.

Three hours after sitting down at the computer my workday’s mostly over, my grumpiness dissolved. I think I’ll go for a walk, and then nap before Emily gets home. We may never climb mountains together as I did with her now-grown brothers, but I’m teaching her chess. As long as she stops screeching that recorder, I can still concentrate enough to hold my own.

Ten years later...

Since starting to take Provigil (Modafinil) for fatigue three years ago, I no longer need those long daily naps and I can generally come closer to a full work day when I need to. I've gone back to more academic work, more conferences and writing. It helps of course that my physical condition has not gotten worse in any significant way. I still walk a lot, travel more than before.

The article I wrote about disability evaluation in the Social Security Administration still draws a lot of readers. Disability evaluation remains a very subjective, very political undertaking.


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Page updated July 17, 2009