Spinal muscular atrophy

‘Despair has no wings …’

Posted on by Mark Aldrich

To be is to despair and to despair is to remember the thousand tightly missed connections and not-yet completed conversations that will reveal themselves eventually as never really begun. The Surrealists got despair, perhaps better than most. They adopted Existentialism’s finer frustrations and rendered them with comedy, joy, and horror in sometimes strange proportions.

The comedy of coincidence and the tragedy of imminent abandonment dominate their work. Everyone is always alone, and this fact is simultaneously hilarious and horrifying in Surrealist Art.

André Breton, the founder of the movement, defined Surrealism as larger than a philosophy, deeper than mere art, an example of pure reason. His definition was both narrow and enormous, and it left his fellow writers, thinkers, and artists with the notion that they either were or were not Surrealists, whether they thought they were or not. If you said you were, you probably were not. The Surrealists did not reside in a safe and amusing world interrupted by slightly sad moments and then dinner; they lived fully in a horrifying and hilarious existence that demanded full attention, especially to one’s unconscious.
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Sleep, Perchance to Zzzzzzzzz

Posted on by Mark Aldrich

We measure the quality of our day by the number of achievements we have. Number of documents published versus quality of work, or the number of times this week we beat personal commuting records to and from the office, or numbers of reps at the gym, or, worse, for those dieting, number of days without “cheating,” which represents even more harsh ways to harshly self-judge.
We live in a culture of Other Peoples’ Success and thus exist in a competition with others for more successes than them and yet better ones. This is because, as Brené Brown, a famous sociologist, points out, we live in a “culture of scarcity. We wake up in the morning and we say, ‘I didn’t get enough sleep.’ And we hit the pillow saying, ‘I didn’t get enough done.’ We’re never thin enough, extraordinary enough or good enough—until we decide that we are. The opposite of ‘scarcity’ is not ‘abundance.’ It’s ‘enough.’ I’m enough.”
I’m enough. Not “I’m good enough.” I’m enough. How hard that is to say, and to mean it to be about me, myself, and not you. It is even harder to embrace.— “Get Some Sleep Already,” October 24, 2014

I only remember my nightmares. Which means that either I do not have pleasant dreams at all (not the case) or that I have them all the time but they are unremarkable to me because I live my life under the self-centered guiding philosophy that the only life worth experiencing always feels like a victorious night at an awards ceremony, so I spend my waking life continuously happy and flinging thumbs-up signs at the world (not the case, either).
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Firsts, Lasts. Somewhere in the Middle

Posted on by Mark Aldrich

There are many “not-yets” in this particular life. A lot of firsts yet to come. In my clever disguise as “me,” one consistent fact about my me has been its surprising lack of aplomb when doing something for the first time.

My reactions are aplomb-less because they are reactions, not responses, usually. It is often as small a matter as declaring out loud with my outdoors voice, “This is the first time that I have … .”

There is one thing I recall from my first day of kindergarten: Being shoved off a three-step cube that bridged two sides of the classroom together. I had decided to greet each new classmate with a handshake and that was my reward for acting like a grown-up. To this day, forty years later, I am rarely the first to offer a handshake in social situations, and on the annual occasion when I do offer my hand first, the party whose acquaintance I am making usually reinforces my reasons for not offering my hand first.

(A couple years ago, I met someone, stuck out my hand, and then watched as the guy looked at my hand, at his hand, and then back at my hand. He did not shake my hand. Had I challenged him to a duel or something? We did not become friends, and the one time we hung out with each other he spent several minutes verbally lusting for one of my female friends, which I ended by walking away after pointing out that she and I were friends. A first impression may not always be right, but they can be.)

I do not often wear life like a loose garment, as it says somewhere that I should, but there are exceptions: The moment I met my girlfriend. (Her name is Jen, by the way. I have not formally introduced her to you or you to her: Jen, readers; readers, Jen. This is probably because I consider her The Reader and have told her that “Dear Jen” is at the top of the first thing I wrote after she and I met, and that everything I have written since has been the body of that letter, including this website.)

I aspire to wear life like a loose garment. A condition that I have, spinal muscular atrophy, is helping. SMA is a genetic disease, but for me, an adult with the adult-onset version, it is not a life-shortening illness. It reduces my mobility. I move slowly and sometimes walk like I am a flat, two-dimensional, cartoon character. But I can walk. Sometimes, but not often, it hurts. I am not as sadly intimate with pain as so many others are, but what little I get to suffer as my muscles fight a silly fight against atrophying make life into a tight garment for me and every role I embrace—lover, writer, son, brother, friend, handshake specialist—goes out the nearest window.

There is a last first and I hope it is faaaaaar off. It is reported that W.H. Auden desired that his last words would be, “This has never happened to me before.” In a great speech, the basketball coach Jim Valvano explained life:

There are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. Number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.

http://www.youtube.com/watch?v=7boMvBQVQ3Q
 
A full day in a loose garment and life will offer no more rude handshakes. As the sadly late Stuart Scott used to say, “Boo-yah!”

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In answer to no one’s question: Yes. I chose a new layout. I was using “The Columnist” all 2014, was happy with it, but thought I would change things for the new year. I am using the free layouts still, but might invest in this website. Any suggestions? Does this layout make my ideas look good?

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The WordPress Daily Prompt for January 4 asks, “Tell us about your first day at something—your first day of school, first day of work, first day living on your own, first day blogging, first day as a parent, whatever.”

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