spinal muscular atrophy

Getting Better, One Day at a Time

Posted on by Mark Aldrich

A friend told me about eating out with her “sarcastic” friend—we all have one—when they saw a toddler, bundled up in winter layers, bounce off a closed glass door and fall because the child had not perceived the door.

The sarcastic friend said, sotto voce, “Get used to that, kid.”

Life is a clear, freshly cleaned, plate glass door that no one notices is a door, even with a shiny metal door handle at every-door-you’ve-ever-seen’s-door-handle-height on it, because we are too busy thinking about life until someone bonks into it. Loudly.

When are we too young to learn that? or too old to be reminded?

I bonked into my own life, repeatedly. Another friend has an analogy: Whenever he lived like he thought he was the “captain of his own ship,” he would run it aground, back it up, direct it in what he thought was a new direction, fire up the engines and re-launch full speed ahead, only to find that it was not a new direction at all and he had re-grounded it in the same spot, but deeper in the muck.

Ten years ago, my SMA symptoms were probably beginning to manifest themselves but I was still walking everywhere, and even if I did notice any changes I was not someone who was going to say anything out loud about them to another human being. I had terrible leg cramps. My right leg would spasm out from under me if I stood still for long, but it had done that for years; my reflexes would catch me and pop me back into place. That happens to everyone, right? I fell in my own apartment, a single-level, one bedroom, hard-to-fall-down-in apartment and twisted that ankle sometime in 2004. SMA? or something else?

It is possible it was my leg misfiring, a neuromuscular something-or-other, as well as something else. In 2004, I was still active in another disease, alcoholism; that stumble that I mentioned is not something that I actually remember as I was in a brownout that night, an ambulatory blackout. I remember awaking in pain and with a foot too swollen to put a shoe on it. Ice and aspirin and I was fine within days or never.

AA_Anniversary_Medallion_Cobalt_BlueHad my alcoholism not gone into remission four and a half years ago through a lot of work, I would not: be writing; know about SMA; know that I was born with SMA; or be walking at all, probably. I would not have the income that I have (Social Security Disability), which is a very small stipend but it is regular; I would not know eighty percent of the people I now call friends; I would not be in the relationship that has outlasted the few relationships I had ever adventured my way into and out of over the years.

I would not be walking because I would not know what was happening, would not have complained to anyone, much less a doctor, and probably would be on a walker by now instead of a cane. I would have silently suffered with a fear that my condition was one I “had drunk myself into,” which would probably frequently be a thought immediately preceding another guilt-riddled binge. (SMA is a genetic disease, and its symptoms would have appeared when they did even if I had been a teetotalling professional athlete.) When I was active, I liked feeling bad, feeling guilty, feeling self-pity, even, because I liked the relief for those feelings that I had in a bottle. I enjoyed feelings, good and bad, only insofar as I could suppress them.

Alcoholism is a disease, a psychological and physical one, in which craving supplants all emotions and that emotion directs all actions. All addictions seem to share that simple self-centered rule and draw vitality from this circular emotional logic. The solution is simple but difficult; for me it involved getting involved with life, doing for others, with others, and noticing that I am not the center of the universe and that you all are not my creations, figments of my imagination. The trick was getting me to want that, to notice that I did not know or had forgotten all this.

About ten years ago, maybe eleven, I tried to contact my future self, the 2014 edition of me with several years of sobriety. I called the A.A. hotline and some nice person listened to me for a bit and then he told me he would get me in the morning and bring me to a meeting. I of course did not go. The first step in recovery is to admit “we were powerless over alcohol—that our lives had become unmanageable.” I knew my life was becoming a wreck already, even with a good job, but … I knew nothing else. Ten years ago I was on Step Zero—I knew that MY life was wrong somehow—but I did not come into recovery until 2010; I do not wish those six years on anyone, even people I detest.

I do not wish SMA on anyone, even people I detest, too. The beautiful thing about bonking into real life is that the best people I know are alcoholics and addicts taking their recovery seriously and people with neuromuscular diseases—like SMA and SCA and Friedreich’s ataxia—people who expand their lives and their possibilities even as their boat changes course on them and coach me to do so, too.

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The WordPress Daily Prompt for November 15 asks, “Present-day you meets 10-years-ago you for coffee. Share with your younger self the most challenging thing, the most rewarding thing, and the most fun thing they have to look forward to.”

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A Streetlight

Posted on by Mark Aldrich

At once sarcastic and tender, W.H. Auden’s “The More Loving One” offers a night sky empty of stars:

Looking up at the stars, I know quite well
That, for all they care, I can go to hell,
But on earth indifference is the least
We have to dread from man or beast.

How should we like it were stars to burn
With a passion for us we could not return?
If equal affection cannot be,
Let the more loving one be me.

Admirer as I think I am
Of stars that do not give a damn,
I cannot, now I see them, say
I missed one terribly all day.

Were all stars to disappear or die,
I should learn to look at an empty sky
And feel its total dark sublime,
Though this might take me a little time. —”The More Loving One,” W.H. Auden, 1957

I might very well like a starless sky and call it sublime or subtle in its black-on-black nuance, the poet states, and I do not mourn the sight of a supernova, which is after all the explosive death of a star, and I may not notice the absence of one should it simply blink out, but in all matters, “If equal affection cannot be,/Let the more loving one be me.” In all matters attracting my human attention, be it the night sky or my partner’s dimples, let the more loving one be me.

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I did not know how much I love color as a perceptual reality until my spinal muscular atrophy (SMA) became symptomatic and walking became something that I had to concentrate on while doing.

At night, I started to experience something called “freezing of gait,” which I would also sometimes experience upon coming to a door. I understand it now, but for a couple of years, I experienced terror, simply because I did not understand what was happening. For most of us, walking is partly an improvisation in which the brain perceives differences in the environment—the room on the other side of the doorway, a nearby divot in the field, a slope—and reacts quickly, without thought. The walker changes course, or almost stumbles and pops back up, or stumbles and gets back up. The feet adjust.

The walker with a neuromuscular condition such as an ataxia or a spinal cord injury or SMA has to “think” his or her walking; it is a process of planning a step and executing it and then repeating it, starting with the thought. Each stride has at least two parts to it, and one of them is conscious thought. “Leg: Move.” All of the information the world presents to a “normal” walker with good eyesight is processed silently and rapidly, and the walker walks. When I was first affected by SMA, all of the same information threw me into a freezing of gait response: every doorway to the outdoors presented me with too much information; the world of the outdoors at night was worse with its absence of information. It was a living nightmare and at least now I usually have such nightmares only when asleep.

The night, though. Every so often I still have the freezing moments: at night, with its gift of the absence of color, that huge absence of information. Streetlights cast shadows that appear as chasms, and then my oh-so-ginger step across reveals a half-inch drop. An actual dangerous break in a sidewalk, but a well-illuminated one, may look flat and safe and result in a fall.

It is the nighttime’s lack of color, color which the brain uses to notice spots at which I need to make changes about my next step, that freeze me. I thought I was alone in this, but I am not; “freezing of gait” is not my expression and is a common phrase—when I first read it, I almost cried because I recognized the description and I finally knew I was not alone.

The idea in Auden’s poem probably meant little to me when I first read it years ago. A starless sky? Okay, I can imagine that. But other than the word “Love” in the title, how is this a love poem? “Let me be the more loved,” could have been my personal motto. Give me more presents than I give you and let’s call today good. Love something that can not love me back? I never owned a pet rock. “Let the more loving one be me”? Pshaw.

Blue does not know it is “blue,” and green does not know how many examples and variations it offers. They need perceivers, and that simple fact of perception is Auden’s “love”; for me, I love the varieties of shades and nuances of color, and so do my so-far unbroken legs and arms. I love my girlfriend’s dimples, too.

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The WordPress Daily Prompt for October 26 asks, “Imagine we lived in a world that’s all of a sudden devoid of color, but where you’re given the option to have just one object keep its original hue. Which object (and which color) would that be?”

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Daily Prompt: Punch the Clock

Posted on by Mark Aldrich

The WordPress Daily Prompt for August 21 asks, “If money were out of the equation, would you still work? If yes, why, and how much? If not, what would you do with your free time?”
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I have my final pay stub somewhere around here, detached long ago from the check whose sum it explained. It dates from late June 2010 and I should bronze it like a baby’s shoes.

As it is for me with many other aspects of a common American—well, not just American, human—life, my relationship with work is, um, not uncomplicated. Off the top of my head, from age 15 till 40 I held 14 different clock-punching jobs from almost as many employers, with a couple employers that hired me more than once. Not included in the list is the newspaper reporter job I quit via fax machine the morning of day one, because I really am a terrible employee and I guess I wanted to prove it quickly, and the one time I was paid for an acting gig (onstage with a cardboard box on my head and a ukelele in my hands—it was a little avant garde, and getting paid five bucks made it even more so).

Life for me for the last four years has been nothing but free time, however—yet I have never been quite so productive. I am the person for whom this question was written.

I have not been another person’s employee since the summer of 2010, when I was asked to leave my last job, which I had not enjoyed very much for three years and nine months, because I had not enjoyed it very much for three years and nine months too many. The manager and I decided that I no longer needed to consider him my boss and he no longer needed to consider himself my boss. On that much we agreed, so we parted company and even deleted each other from one another’s Facebook. It was that serious a firing.

The symptoms of my diagnosis had been prominent for most of the three years; I started walking with a cane in 2007. When the symptoms of adult spinal muscular atrophy first showed, they came suddenly. Only recently have I learned that this is a common experience among people with neurodegenerative diseases. When walking becomes difficult—in my case because the nerves that had been sending (ever dimmer) signals to my legs (which had started to atrophy from receiving ever dimmer signals and thus were not being asked to work)—the end of normal walking comes as if everything had been just fine one day and the next day as if one’s shoes had been nailed to the ground or one’s co-workers had painted the floor with superglue. (I must not have liked the job very much, if I thought such a prank was possible!) It is sudden and scary when the progression of deterioration is undetected and even undetectable until the day it is completely not.

Since my last job was not a high-paying one and did not offer free or simply less expensive health insurance, I had none. So I neither spoke with anyone about my developing deterioration, nor did anyone suggest I do so. But being suddenly unemployed (so very unemployed my boss had unfriended me, please recall) meant I could get poor people’s health insurance, Medicaid. (This is before the Affordable Health Care Act, which also has in fact benefited me.)

With Medicaid came the, “Hey, doc, what gives with my legs?” conversation, and, eventually, the answer(s). With the answers came Social Security Disability, which is my sole income as of right now. If I had had insurance at an earlier date, perhaps I would have received the diagnosis and declaration of disability earlier and been able to leave my last employer on better terms. Entertaining such hypotheticals is a highly un-useful pastime, I find.

My barber asked me recently, “What do you do?” And I replied, “I am a retiree.” As I have written elsewhere, I am an alcoholic in recovery, sober several years, and I am living “Mark’s Life, Version 2.0.” The universe has afforded me a second life (not the online virtual community, a real second life), and the opportunity is not being wasted. I am writing, every day, on a schedule of my own fashioning, speaking with and sometimes counseling people.

There are three jobs every person in recovery thinks of pursuing, as I certainly did: becoming a counselor (but the hours of training are arduous), becoming a truck driver (perhaps because a desire to escape partly fueled the addiction and does not leave), and, after being told by enough people, “You oughta write a book about your stories,” a writer. Luckily, I already was a writer.

From Elvis Costello’s 1983 album, Punch the Clock, “Everyday I Write the Book”: