spinal muscular atrophy

The Curse of the Should-Have-Dones

Posted on by Mark Aldrich

I do not know the attractive couple entering the above photo from the left side of the frame, but that is okay, as I did not take the photo, and this is not about them.

If I had a steadier hand with the photo-editing Clone Stamp tool, the two of them would instead be an oddly tall bush of purple flowers or another stack of blue Peroni umbrellas or two more versions of the bicycle that they are walking towards.

My hand is not that steady with the photo-editing tools, so their brief moment together (are they still together?) was spared awkward editing. May the rest of their lives together or the remainder of their lives apart continue to be free of terrible editing decisions or (yikes!) deletion by a heavy-handed photo perfectionist like me.
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Near-Life Experiences

Posted on by Mark Aldrich

“Shall not regret the past nor wish to shut the door on it.” I heard that somewhere. Recently a friend was bemoaning the lack of romantic exploits in his past, that he could have cheated on past companions but did not; he said that he still regrets that he had been “too shy.”

“Why create regrets about mistakes you did not make?” I asked. Because I live in a comic book in my head, I added, “That’s some deathbed scene, telling your wife and kids that you only regret that you hadn’t screwed up more.” My friend did not invite me to leave his moving vehicle.

Perhaps mistakes are the spice that makes life interesting, but it seems to me that I do not need to be anyone else’s mistake.

My present relationship is the longest I have experienced, three years last week. I am 46, so this statement represents a lot of dumb work on my part. A quarter-century of it. A lot of effort went into the fight to remain self-obsessed and increasingly isolated.
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ALS, SMA, and Nice Ice

Posted on by Mark Aldrich

Each one of us is a part of an interest group. This does not mean each of us must carry out the duties of being an official representative of said interest group, but, for example, I might be the only Jewish person you know. As such, I try to be a good guy and hope that this represents good things.

(I have been that one before, actually—when I lived in the Midwest—and I had some fun with it. Not that there are zero Jewish people in Iowa, there are, but one couple that I got to know had not met one or they claimed to have not. Which makes me a member of yet another special interest group: I may be the only Jewish person you know who was the first Jewish person someone met or said that they met. Life is full of milestones.)

I am male, middle aged, half-Jewish, half-Baptist, an alcoholic in recovery, tall, thin, and I have a disease that is disabling me. It is spinal muscular atrophy, type 4. Do any of these things merit me tapping on your shoulder and requesting attention from your charitable impulses? Or your attention at all?
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