Health

Guilty of White

Posted on by Mark Aldrich

The lottery that I won at 6:37 p.m. on November 18, 1968, was not the product of any hard work on my part. It was not a reward for playing fairly or for especially clean living, nor was it awarded to me for playing by the rules and earning my way.

It was a scratch-off ticket, generated at random, and someone else could have gotten it just as easily as I did. Like the service at a lottery counter in a gas station, life is a first-come, first-served proposition. It was a scratch-off, and, my gosh, did I win a nice jackpot.

If reincarnation existed, one could say that someone else may have deserved this life more than I did or do, and one could certainly argue that someone else might have done a better job with it than I have so far, but it is mine. It is the golden ticket.

The lottery that I won paid off immediately: I am white in a country that treats this minor genetic condition like it is something one diligently worked for and earned. And I am male. I am heterosexual. This world and this country rewards the bearers of those accidental tickets pretty generously, too. When I was a child, my family was middle class in income if not status in a country and at a time when being in the middle of middle-class life in America meant one was living more comfortably than three-fifths of the residents of the rest of the world. And citizens in this country treat that privilege like a victory over immediate enemies rather than the several-generation accumulation of incidents that it is.

Education? Paid for through high school by virtue of being born where I was. By which I do not mean the Spackenkill school district. Nor Poughkeepsie. Not even New York State. Being born in America in 1968 meant an education. (The states were not yet privatizing education or dictating their own local test-versions of education, so I benefited from learning when the dinosaurs existed and the one main reason for the Civil War.) Thanks to my parents, my mom especially, I do not remember the experience of learning how to read or count, because I was taught before my earliest memory (age two and a half) is time-stamped.

Perhaps it is a bit of speculative science fiction to offer the idea that none of these matters are in and of themselves good, righteous, holy, or even earned things. I could have been born in a country that does not privilege the pink pigment of white skin. Or I could have been born in this country but not white. We could have lived in a country where money did not provide some piece of status and “our type” might have been punished at random moments. My mother was born and raised in America, but she had cousins in “the old country” (near Minsk) who were exterminated. They had money.

So I know that I am racist, sexist, whatever-ist. By virtue of being born white, male, and middle class in America in the late 1960s, how could I not be? The day that I walk through (every damn day) is a different day than any woman, black person, gay person—any member of a minority group randomly pre-selected according to these criteria by society—walks through. And the sad, simple fact is that it is a luxury for me to even type that sentence or play with that thought. I do not need to consider what life is like for me, what my day is like, because no power group makes me aware of it.

Oh, sure, it’s society’s rules and some people seem to know how to play by them. “If you don’t commit any crimes, what do you have to worry about?” And that is the thing: I don’t. Simply because I am guilty of white, guilty as charged of male. I am a born member of the power elite, me with my $11,000 annual disability income.

Why does anyone march? Or protest? Or agitate? Or riot, finally? Because if you told me that I had “earned” the genetic anomaly that is taking my legs away, which I did not, not any more than I earned being white or heterosexual, I would attack you with my cane, with every fiber of my being.

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The WordPress Daily Prompt for December 7 asks us to reflect on the word “Protest.”

The WordPress Daily Prompt for March 2, 2016, asks us to reflect on the word “divide.”

The WordPress Daily Prompt for April 4, 2015, asks, “Link to an item in the news you’ve been thinking about lately, and write the op-ed you’d like to see published on the topic.” Today is the 47th anniversary of the death of Dr. Martin Luther King, Jr.

The WordPress Daily Prompt for December 2, 2014, asks, “‘It was the best of times, it was the worst of times.’—Charles Dickens, A Tale of Two Cities. When was the last time that sentence accurately described your life?”

Visit “Occupy Daily Prompt,” the DP Alternative.

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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