A friend told me about eating out with her “sarcastic” friend—we all have one—when the two of them 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 I haven’t noticed is a door, even with a shiny metal door handle at every-door-you’ve-ever-seen’s-door-handle-height on it, because I have been too busy thinking about life (or “thinking” “about” “life”) until I bonk 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.
A decade and a half 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 how-d’ya-do, 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.
Had my alcoholism not gone into remission almost seven 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 2017 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 above last appeared in 2014.
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