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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How to Be a Live TV Audience

Posted on by Mark Aldrich

Comedy Central’s two main franchise shows are both recorded in a part of New York City called “Hell’s Kitchen,” a section of Manhattan that extends about 25 blocks south and west of Central Park and west of Midtown over to the Hudson River. Most of the buildings in the neighborhood are former walk-ups and townhouses that are now offices for media companies; “The Colbert Report’s” studio looks like it was a house or storefront once upon a time.

The Thursday, September 18, 2014, broadcast of “The Colbert Report” was a very special one because I was in the audience, as I wrote yesterday, in “Four Minutes and 24 Years.” Terry Gilliam, the legendary film and theater director (the list is epic and includes: “Time Bandits,” “Brazil,” “The Fisher King,” “Fear and Loathing in Las Vegas,” “The Zero Theorem”) and Monty Python animator and cast member, was the guest.

The studio is on the same level as the street outside, but it takes a lifetime to get there. Sorry, that was a sentence from a television ad for a college course in broadcasting that I am working on. We should go back outside.

The tickets for live-on-tape broadcasts are free, because these shows need a full and loudly enthusiastic house for each and every show and the producers do not want people who feel that sense of hostile proprietorship that can come with a ticket purchase. (They do not want an audience of people with crossed arms and an attitude of, “Entertain me.”) A theatrical performance in front of an empty house could nonetheless be great but a television show performed to silence and a performer feeding off the silence could be horrifying to watch unfold. (Only Johnny Carson seemed to be able to work with a not-yet-impressed audience.)

The producers also do not want an audience of people off the street, happy to receive free things, but not aware of how to be an audience. Talk with a stage actor sometime. He or she will tell you stories of the weirdest things that have happened during performances: cell phones going off, of course, but also people taking the phone call; people walking across the stage (especially in theaters with the stage and seats on the same level) looking for a restroom; audience members yelling at or asking questions of the characters as if they are in their easy chair yelling at a TV screen; babies crying. The audience is supposed to be separate from the performance, with some exceptions. A live television show audience is not at a stage show; the audience is a part of the show: the audience is the soundtrack.

Thus, the audience is coached on this point by producers before the taping begins. And then re-coached. The performance at first felt like a pop quiz to gauge how well we had absorbed the coaching. It also felt like if we were insufficiently enthusiastic, we would be escorted back out to 54th Street.

The process of acquiring these free tickets varies from show to show but all of the shows use the method to establish that the audience is made up of fans. (Willing to be loud. Happy to pretend to not be faking enthusiasm.) Some shows use online trivia contests to winnow out the casual fans. My method was the easiest for me: I have a friend who has done this before (he attended “The Daily Show”) and wanted to do it again and invited me.

(Would that we had attended “The Daily Show” last Thursday; former President Clinton was there that day.)

The tickets one receives for registering online for a television taping are not tickets as one usually thinks of them. They do not guarantee a seat. They guarantee a spot on line, in a covered alleyway where one waits for the doors to open. We arrived early, chatted with the show assistants, and waited some more. The assistants are talented at a particular task: they quickly learn who is with whom, names, who has special needs. My friend’s wife sat with me at a coffeeshop for a few minutes while he held our group spot on line, then they traded: she went back and he sat with me. When he and I rejoined the line we found that we could not see her; one of the assistants got our attention (not vice versa, They. Ran. Us. Down), gave us our seat tickets, and ushered us into a room in the building, where she already was.

My thumb.

My thumb.

In that room, one goes through a security checkpoint and then waits. For over an hour. It is a square room, maybe 25 X 25 feet, extraordinarily air conditioned. Several monitors play old Colbert shows on a “Best of” loop. The walls are plastered with Colbert memorabilia. Over the next few minutes, the entire audience-to-be was herded into this room, which made clear the need for extreme air conditioning. Seeing I walk with a cane, one assistant walked me through the crowd to a bench.

Twice an assistant addressed the crowd. Both times the message was: “This is very special. Stephen is going to chat with you before the show, so have some questions ready.” (Perhaps he does this every show and they tell the audience it is special.) “When you’re watching the show at home, you only chuckle at the jokes because you’re thinking about your own life and you hear the audience in your TV laughing uproariously. You’re the audience in someone’s TV now. Whatever you’re going to laugh at, laugh loudly.”

The doors to the set were opened and people were ushered in by ticket number but in small groups; my group of four friends went in together. The bleachers do not have banisters, something which I was anxious about as a person with spinal muscular atrophy and thus almost no balance on stairs, even with a death grip on a railing. One of the assistants saw my cane and the four of us were thus seated in the front, over by the interview table. The stage manager and then the warm-up act coached us some more in the finer points of yelling our laughter. (Since all of you have heard my voice in an earlier post, you should be able to hear me clearly if you watch the show. Of course.)

Contrary to what I thought, the show is not taped in real time; Colbert made one verbal typo and they recorded a do-over, the commercial breaks were over ten minutes each, the interview with Terry Gilliam was over 15 minutes, of which about not quite 10 made the show. The affection between Colbert and his staff was obvious: at one point, while a hairdresser was combing his hair, he started pretending to comb hers. He indeed took questions before the show and again after. All told, we were in the studio for a bit over an hour for a 21-minute show.

The broadcast will be available for free on the website for the rest of this week, so here is the link: The Colbert Report with Terry Gilliam. And here is the 60 second edit:

http://www.youtube.com/watch?v=_7VrM2uHAHE

It was a fun day and night in NYC, thanks to Gerry, Theresa, Ron, Bob and Kevin, and all of New York City. Even the panhandler on the train from Secaucus.

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The WordPress Daily Prompt for April 9 asks, “If you could learn a trade—say carpentry, electrical work, roofing, landscaping, plumbing, flooring, drywall—you name it—what skill(s) would you love to have in your back pocket?” TV host. I am heading to NYC today with my one and only, Jen, to view tonight’s taping of “The Nightly Show,” starring Larry Wilmore. It is in the same theater as “The Colbert Report” was recorded each night. That is the reason for re-running this column from September. Tune in tonight at 11:30 EST on Comedy Central to see if you catch a glimpse of me and my love. Full updates tomorrow.