Getting Better, One Day at a Time

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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Daily Prompt: George Takei Lost a Fan

The WordPress Daily Prompt for August 13 asks, “When was the last time a movie, a book, or a television show left you cold despite all your friends (and/or all the critics) raving about it? What was it that made you go against the critical consensus?”
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De gustibus non est disputandum. Loosely translated this means, “There is no reason to argue about matters of taste.” There is no fighting over subjective personal likes or dislikes such as colors or sounds. You can not successfully argue me into liking certain smells. I can not punch you hard enough to like what strawberries taste like. Being ticklish or not being ticklish is not an example to offer in a friendly “nature v. nurture” debate.

Comedy does not fall under the “can’t argue (or explain) taste” category of conversations. It is not a subjective taste. At worst, comedy falls in the “agree to disagree” territory—when it fails to entertain or amuse or even offends. But “agree to disagree” is a phrase that at least implies an acceptance of the possibility that opinions can differ. At best, the discovery that you and a new acquaintance share a sense of humor can seal the deal on a friendship for life. I do not know if you find what follows funny, but if you do, consider us friends (if you do not, that is fine, too; it is simply that these 16 seconds might be the quickest way to determine if you and I are potential friends) (yes, I am exaggerating):

Comedy often offends. To a degree, all comedy is offensive, as it shakes up and toys with perceptions; if you do not find the “Fish-Slapping Dance” funny, it may be because you find the waste of intellectual effort offensive. Or perhaps fish jokes generally turn you right off. “How is this funny?” becomes the same question as “Why is this funny?” “Why is this on my screen?”

Usually, “How” and “Why” are not the same question, not even related. How a car functions (fuel, pistons, wheels, tires, go go go) is not the same question as why I am using it (to go buy more fuel to drive somewhere else … um, I may need to look into this vicious cycle). The “Fish-Slapping Dance” actually can be seen as a depiction of the “How is this funny?” conversation. Michael Palin, the “little fishes,” dances the question, and then John Cleese, the “big fish,” delivers the only possible retort. “It is or it is not.” Splash.

“Because it is” is sometimes the only reply, but someone who replies with this is merely saying “Because it is funny to me,” as if to say that one can not argue about taste. That is true, but funny is not a taste. (“Funny tastes” might be a future “Daily Prompt.”) One who says this is falling prey to the logical fallacy that if something is amusing to him or her, and he or she rhetorically concedes that while YOU may not find it amusing (thus covering both bases), you, the non-amused one, are wrong. Wrong. And then you may find them theorizing that you have something rigid intimately involved with your colon. “Agree to disagree!”

So whose perceptions ought to be offended? When can offense be something that even the offended party finds amusing? I do not know if there can be a “unified field theory of offensiveness.” Or comedy. Myself, I am not a fan of “cringe comedy,” television programs or films depicting socially awkward situations in which two parties are in conflict and one party resides in an obviously superior social strata, yet they are the aggrieved party, and we the audience are supposed to laugh at the supposed aggressor, who may simply be a character depicted “doing their job.”

When all the roles are depicted as equal, scenes of bullies getting their comeuppance or returning the comeuppance can be sublime:

Poor Edgar Kennedy! Poor Harpo! Poor Chico! And they are all bullies! All three take turns being the most creatively worst person. They kick each other and destroy hats for no reason other than that is what no one in these positions ever does. They are equals. The comedy lies in the dance of disaster that unfolds for no reason. This is not cringe comedy, as all three get some sympathy and a head shaking laugh. But cringe comedy would happily use this bit (and it goes on much longer through the film, the essential “Duck Soup,” from 1933) and not get what makes it funny. (Larry David would be Chico Marx and his bald Edgar Kennedy would be some anonymous barista.)

Comedy works for me when it presents someone punching up at someone else, at a bully, at someone or something in power. It never works, and it is more likely to offend me, when it is a matter of punching down at someone or something.

(But isn’t Chico Marx’s mock-Italian accent [he was French-Jewish, by way of Brooklyn] offensive? I could reply with the “you have to know the context” argument, that his act was a commonly seen one in the era, that really, Groucho was the only Marx brother with an act unlike any other seen in the era, but if you find the accent offensive in the here and now of 2014 because it is not 1933, I really have no reply. If it is offensive to you, then it is.)

We all are members of interest groups. I am white, half-Jewish, half-Baptist, tall and thin, an alcoholic in recovery, and have a disease that is disabling me. What is the difference between this:

And this:

The second image is from the “Fight Ataxia Project,” a website for those people diagnosed with one of the many forms of ataxia (I was diagnosed with Friedreich’s ataxia for a year) and for their loved ones and caregivers. It is one of several t-shirt logos that the group is selling. When one has a neuromuscular disease like ataxia or spinal muscular atrophy, one trips a lot and one falls down. The t-shirt is for people with such diseases. It exists to show that we can laugh at (at) ourselves. With ourselves.

The first image is a surprise. Not in itself; I have seen it before. It falls into the general territory of hard-hearted internet memes like, “every poor person is gaming the system and has a better cell phone than me,” or “look at these out-of-perfect-physical-shape shoppers at Walmart! They dress funny,” or “disabled people are faking it.” I can only speak for me, but I am poor and you probably have a nicer cell phone than I have, I shop at Walmart and hate it, and I am disabled and wish I was faking it. Why would I?

But I am my own interest group here, obviously. Of course, as a disabled person (not in a wheelchair, and I avoid the word “yet,” but … you know) that must be why I must be offended, right? Nope. Not that. My offense is from the combination of the “miracle meme” insult itself—but it’s not that insulting and I wouldn’t be posting this long post merely about this image—with the “you can’t argue about taste” attitude many took towards it when it was shared by George Takei on his Twitter account last week. (There is a must-read piece—after reading mine, of course—by Scott Jordan Harris in the August 13 issue of Slate.) Yes, that George Takei.

This George Takei:

The wonderful George Takei. The heroic George Takei whom everyone loves, including me. Who has in the past taken down internet memes from his vast social media network when he and his ghost writers have come under criticism for offending. He did not take this one down when disabled rights activists complained (obviously, as I was able to post it here), and wrote this response:

Fans get “offended” from time to time by my posts. There hardly is a day where something I put up doesn’t engender controversy. Concerned fans, worried the sky may fall, ask me to “take it down.”
So I’m also going to ask them also to take it down—a notch, please.

What? Because this internet meme is ironic (a handicapped person stands up to get a bottle of booze fro the top shelf), see, and I do not get the irony because I am too close to the issue. You can’t argue taste, after all.

But wait, George Takei’s argument seems to be that you can argue taste. Many of my posts court controversy, he says, and I receive complaints every day, some of which I respond to, but the complaints from the disabled and their advocates, well, those do not balance out the sheer comedy of the miraculous alcohol post. The complaints of the sensitive disabled (if anything, the disabled are pretty thick-skinned) fell on his deaf ears. Which is a handicap.

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Added at 8:07 a.m., August 14:
George Takei posted this on his Facebook page this morning:

I’ve just come back from an extended trip to England, and I came home to a large number of fan emails concerning a meme I shared more than a week ago. In that meme, a woman in a wheelchair was standing up to reach for a bottle of liquor in the store, and the caption said something about a miracle in the alcohol aisle. To this I added a quip about her being touched by the holy spirits.

I did not expect the level of offense this meme caused. I had naturally just thought of those movies where the evangelical preacher miraculously cures someone who was disabled. What I’d never really considered before so many fans wrote in is how that portrayal of disabled persons is filled with ignorance and prejudice—two things I never want to promote, even inadvertently.

Now, before all of you go and start defending my right to post what I want, I want first to thank the many fans who wrote in with the hopes of educating me on the question of “ableist” bias. While I did not ever mean to suggest by sharing the meme that all people in wheelchairs cannot walk, or that they don’t need them despite the fact that they can stand on their own from time to time, I have taken the fan mail and criticism to heart.

After I’d posted the meme, I noted in the comments an inordinate amount of very uncivil behavior on the part of many fans, including both those who demanded I take it down and those who said I should leave it up. I also received a good deal of email IN CAPITAL LETTERS asking me if I would feel the same way if someone called me FAG or a JAP. Now, I took down the meme from my timeline shortly after it went up, but I admit I was decidedly irked by the tenor of some of those criticizing me. In that moment, I posted a follow up telling fans that perhaps they should “take it down—a notch” which, in retrospect, was not the most sensitive response.

The fact that I was surprised by the response the wheelchair meme received indicates that I do indeed lack knowledge, and some sensitivity, over what is clearly a hot button issue, and that I and others can take this as an opportunity not to dig in, but rather to open up to the stories and experiences of those in the disabled community. I appreciate those who took the time to write in. I wish I’d had the chance to respond sooner, but until today I was not able to go through all the mail I’d received.

So to those who were hurt by my posts on this issue, I ask you please to accept this apology. To those who think I shouldn’t have to apologize, I want to remind you that I get to decide what I apologize for, so there’s no need to come to my defense.

Very well then, carry on, friends. Carry on.

SCA or SMA? Ataxia or Atrophy?

“What a terrible thing to learn you have in the middle of your life.” That was my neurologist, my new neurologist, speaking.

In 2012 my first neurologist, Dr. M, diagnosed me with late-onset Friedreich’s ataxia, or at least he reported that he felt I have a form of spinocerebellar ataxia (SCA), a disease that has dozens of forms and is genetic in origin. Dr. M’s work led to insurance approval to conduct an expensive genetic test to identify which ataxia I have. (The approval would not have been granted frivolously, so I underwent three MRIs, one EMG test, many blood labs to eliminate Lyme disease and the many other viruses that could be a cause of my symptoms, and started seeing a cardiologist. The fact of my cardiomyopathy led to approval for the DNA test.) But Dr. M moved to a different practice and I met my new doctor, Dr. K, this month.

Dr. K reviewed the first doctor’s extensive notes and looked at me. “You don’t have Friedreich’s ataxia.” (Dr. M was not much for granting eye contact, so this moment of direct conversation surprised me.) Dr. K asked me about my symptoms and when they seemed to begin to appear, some of which I have written about elsewhere. Since 2005 I have been aware, at first dimly, of a mobility disorder developing in me; today, in 2014, I walk with a cane, stiffly, like I am wearing very tight jeans, have little sensation in my lower legs and even have moments of “body confusion” in which I think I am moving my right leg but my left leg moves. I sway when I stand and fall/walk into walls and my sense of where I am in the world contributes moments of comedy to my day.

normal brain

‘Abby Normal?’ Not my brain, but good-looking one like mine.

My MRIs show a spinal cord that is shedding its myelin sheath protecting the nerves inside, a couple vertebrae that have spontaneously fused—”When did you have this happen?” Dr. K asked me. “I don’t know,” I replied. “I’ve never had anything done on my back.” “Car accident?” “No.” “Okay, you have a spontaneous fusion”—and places where the nerves themselves are atrophying, withering. But my brain, my cerebellum specifically, it is a healthy brain. I have a fine-looking thinker. Thus, Dr. K posited, I do not have a spinocereballar ataxia, as my cerebellum is healthy.

I spoke in Dr. M’s defense. “I think he was surmising from the tests …” Do not use the words “think” or “surmise” with neurologists. “Ataxia,” Dr. K offered, “has been treated like an umbrella term for patients with movement disorders like yours. But it really is a specific disease and you do not have a spinocerebellar ataxia.” He turned to his computer and started typing what I thought would be yet more patient notes and requests for another battery of tests (Dr. M had generated several pages on my case), but then I noticed what looked like a Wikipedia page on his monitor.

“Based on your labs and the extensive deterioration in your spine and weakness in your legs, you have spinal muscular atrophy, I believe Type IV.” (I swear I heard him say “Type IV” with Roman numerals and in italics.) “Has anyone suggested this to you? No? It may be Type III, but I would say that you have a type called Kugelberg Welander, but very late-onset.” He looked back at me. “You have a genetic disease. What a terrible thing to learn you have in the middle of your life. Your symptoms are severe and I have not seen many adult cases, but you will live, I think, a long life. Your legs will continue to get weaker, but you will adjust.”

(How beautiful is it to have a doctor look in your eye and simply say, “What a terrible thing?” To my first neurologist, a terrific clinician and lab expert, I sometimes felt like I was an interesting case but basically a piece of meat that had the unfortunate habit of speaking.)

“You’re a writer? You’ll probably be teaching me about this by our next visit.”

Spinal muscular atrophy is a genetic disease, a muscular dystrophy that in most cases affects children, but not in my case. The vast majority of spinal muscular atrophy stories are incredibly sad: Type I strikes infants who do not ever control their own movements and eventually suffer respiratory failure and die before age 2. The second type strikes children before age 2 and renders them unable to walk, but most SMA Type II patients live into adulthood. Many children and young adults seen on the annual Muscular Dystrophy Association telethons through the years have had SMA Type II. Type III and Type IV—and there seems to be some debate as to whether there is a Type IV at all—are considered “late onset” and offer patients the lifelong challenge of impaired and deteriorating mobility and, eventually, respiratory difficulty. Since my symptoms struck in my mid-30s and grew aggressive after 40, I seem to be the very picture of an argument for naming a separate Type IV, if what I have is a spinal muscular atrophy.

Dr. K asked about family and friends. I mentioned something about having developed some friendships as a result of reaching out to the online ataxia community (Jason and Kristin: this is me talking about you). “But you don’t have ataxia!” he exclaimed. When he asked if I am still interested in a genetic test to definitively identify what it is I do have, I reminded him that I had been approved for a test for Friedreich’s ataxia. All that test would have shown us, he replied, is that I do not have FA, not what I have.

So one neurologist posited that I have a spinocerebellar ataxia (SCA) of unknown cause and unknown type and another that I have spinal muscular atrophy (SMA), which is rare when it strikes adults but has a relatively gentle prognosis, if a challenging one, with a future of ever decreasing mobility. I know that I do not know. My daily challenges are unchanged by either diagnosis. I could never wish either SCA or SMA on people I detest, but my disease leads me every day to deeper friendships and I hope more patience. Those are both good things. I think I laugh at myself more. I have to.

Since my preliminary diagnosis in 2012, I have been learning about the different ataxias and following the research progress that seems to be unfolding almost every day, especially as it affects Friedreich’s ataxia.

Both FA and the other SCAs and SMA are very serious rare diseases that all too frequently constrain, impair, or even end young lives. But late-onset genetic disease patients, like me, provide a useful, slow-motion version of their disease as it unfolds. As the doctor says in this video here embedded: “The SMA type 3 and type 4 patients are probably going to provide critical information as to the mechanisms of SMA. It is also possible, that a better understanding of the type 3 and type 4 patient, understanding why their disease is so much more benign than the type 1 and type 2 patient, might provide additional windows of insight into therapeutic strategies.”

I have signed up to be listed on the International SMA Patient Registry.

Snow-taxia: Ataxia, Part 3

The first snowstorm of the year provided me with an opportunity to compare my ataxia symptoms from last year to now. I joked with a friend that weather like today’s gives everyone a moment to experience what it is like for me and other ataxians every dry, sunny day.

New Paltz, where I live, is laid out on a gentle downward slope to the Wallkill River, the north-flowing, rather narrow (only about 175 feet wide at New Paltz), tributary of the Hudson River. As this year unfolded, I became aware that walking downhill, even with a cane, is becoming a greater challenge. I take it slowly. Walking uphill, I can still develop a rhythm (this is the only chance I have to tell anyone that I have rhythm!) and make my way. 

Watching the snowflakes accumulate.
Photo by Mark Aldrich

I am very happy that I can walk safely. I refuse to give in to unhappy thinking about things lost or experiences that I can’t really do again–heck, I’d enjoy making snow angels like when I was a kid, but I do not know what the bottom half would look like (an angel on a stick? a realistic depiction of someone thrashing about in the snow?) and I and whomever would be standing by to pick me up (completely necessary) would pretty much erase it upon picking me up. I am lucky that I have people in my life who will pick me up if I fall in the snow. I can walk and I am not going to play emotional games with myself, listen to the inner monologue about how soon? How soon until I can not, or will not, or fall badly? (Soon enough, and my worst face plant of a stumble and fall so far in 2013 was on a sunny, dry day, anyway.)

So I ventured out this morning to visit my support group and not spend the day watching the snowflakes accumulate. At first, I was not going to risk a fall–after the first snowfall of the season, sections of New Paltz’s sidewalks sometimes remain snow-covered until around May 15–and I know that the cane is not my friend on ice. Things that I used to like about walking in winter, I no longer enjoy: the moment of unsureness, of feeling a slide start, or the sound of my boot punching a crunchy hole through what I thought was solid ground–these now represent some of the difficulties with the everyday that my new world offers me.

I safely arrived at my destination. No falls, no slips–so now I am probably falsely confident. (But I happily accepted a ride home.)

A Duck About Town: SMA and Me

It is hard to see, but on the top left side of the “The Gad About Town” tab (at least on a Windows browser), to the right of the WordPress logo, there is a little square box that looks like a blob of brown and green. I first placed it there as an inside joke with myself, but the story is worth sharing. The full-size photo is at the bottom of this article.

It is a photo of a duck. 

In 2012, I was diagnosed with a still-undetermined form of spinocerebellar ataxia. (I just noticed that the word “spinocerebellar” now freely flows from my fingers as I type it; I insist on Wikipedia’ing it to check the spelling—to preserve the illusion to myself that this is still new to me—but it is now forever in my vocabulary.) This disease, which I have written about before (“Ataxia“) and will again, is progressive, degenerative, affects my sense of balance, and is robbing me of my physical control of my legs. 

(October 22, 2014 update: in May 2014, a new neurologist was assigned to me and he corrected the first diagnosis to something else, spinal muscular atrophy type IV. Friedreich’s ataxia, the first diagnosis, carries with it a shortened lifespan, a diagnosis that in turn carries with it more than a few nights lying awake and staring into every abyss one thinks is on the other side of any door. Please visit my article about the re-diagnosis, “SCA or SMA?” Everything else in this article, written in December 2013, still reflects my perceptions.)

My symptoms first appeared in 2006, I now realize, when my walking began to slow. I was always a rapid walker, and I felt like I was moving my legs in the same way I had always moved them, but the time it took for me to complete familiar walks was getting ever longer. Even in 2005, while mowing a friend’s lawn, I noticed that it took me longer than it “ought to” have. My legs were tiring easily. Finally, I started to run late for appointments (most hazardously, my job across town) and was perennially underestimating the time it would take me to walk somewhere.

All this was new. I shared what I was experiencing with no one, except to promise when my lateness was noticed that I would “do better” next time.

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A blue heron, patrolling the shore like a cop on the beat.–Photo by Mark Aldrich

This spring and summer, some friends and I made frequent visits to a pond at a local college campus. A former make-out nook for at least a one of us, this year it became a quiet place to get away from some turmoils in our lives. Several species of waterfowl live on the pond, which is nonetheless quite small. One day a blue heron came by, which is a common but always special sight here in New Paltz. It hung around long enough for me to photograph it walking along the shore.

There are usually a few breeds of duck on the pond, and my friends and I became “expert” in observing the inter-species social behaviors of the different breeds. (In a word, some breeds are just bullies, even to humans who are feeding them breadcrumbs.) We developed story lines about each duck family’s day.

One family of five, a mother duck and her four ducklings, became “my” family. This was because one of her offspring was lame. He or she—I decided he was a he, but I believe it is a she (those who know about such things can tell immediately when looking at the photo below)—appeared to have a broken right leg. Cute and small as they all were, the four of them fuzzy and adorable like they were posing for a children’s book cover, the siblings would push him away from our breadcrumbs, but he always fought hard for his share.

Broken or born that way, he held his leg tucked alongside, which forced him to remain seated on the ground when the others were toddling towards the crumbs. Then, in a flurry of action, he would start to wobbly waddle, but he was perpetually a few steps behind. He was slow in other ways, too: by the time his siblings were free of their baby fuzz and displaying more grown-up plumage, he still had some fuzz.

I saw that, even with his right leg held in a crook, even sitting awkwardly on the ground, once he started walking, after a few unsteady strides he would catch up to his siblings. But he honked just as loudly as they did, each of them telling the others to mind their manners at the top of their voices. In the water, he appeared to swim as quickly as the others.

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In 2008, the bizarre sensation of being always on the edge of a fall became a part of my life. I could not walk across a parking lot without first looking across it to plan which cars I would use as targets for potential falls. I started walking with a cane.

Faced with the prospect of crossing an empty parking lot (I worked for an electronics retailer that frequently locates its stores in open-air plazas, so that is why I have twice mentioned parking lots), I would look for an abandoned shopping cart (there was a grocery store nearby) and use that as a walker.

As before, I shared what I was experiencing with no one, except sometimes I made jokes about walking with a cane—I named it “Michael,” as in the actor—and I did not have a doctor, because I was 40 and a guy and why bother?

I did not have a doctor, because 40. I was 40 and my legs felt like they were in boots nailed to the ground. I would take a step only to find that neither leg moved.

By 2011, completely foreseeable circumstances had given me the beautiful gift of poverty and thus Medicaid. Now able to afford a few visits to a neurologist, I underwent the series of tests that led to my diagnosis.

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After that first visit to the duck pond, I did not expect to see “my” duck again. My not-so learned musings about inter-species duck behavior and observations about seeing him clubbed regularly by his siblings led me to my expert prediction. Marlin Perkins in my mind, I lectured one of my ever-patient friends about my sad theory that he probably had been rejected and abandoned “for the greater good of the family.”

On our next visit, two weeks later, he was still there. Of course. He was still missing every first chance at breadcrumbs—even those tossed specifically at him—but fought his siblings to get his crumbs once he started moving. They still pushed him away from their second and third chances at crumbs on the ground, but he was louder than the others and was getting faster, even limping, but doing something like using his lame limb like a cane. He was using his lame leg.

* * * *

I use a method of walking that I devised without knowing what I was doing back at the electronics store: I push off with my right leg, like a right-handed pitcher, and swing my legs under me, using the cane to tap a rhythm. Once I get myself up to speed, I can outpace many of my friends. It is difficult for me to stop suddenly, like when I am jay-walking, so I do not do that. There are days where I do not know what my legs are going to do and we seem to educate each other.

Two friends who walk with me step by step.

Every day, I live with the sensation of being on the edge of a fall all the time, even when I am sitting on a chair that has arms on both sides, and I stand upright by bracing myself with the cane, standing against a wall, or by surprising a friend (often, my beautiful girlfriend) by grabbing their shoulders. In the photo seen here, taken in October 2013, I am with two of my closest friends, but I am holding myself up with a folding chair on each side.

Because I have a diagnosis, I know why I am experiencing these things, and new developments can no longer be as surprising as the discovery in 2008 that it seemed that I could no longer walk. Because I have friends in whom I confide (like you who may be reading this), any new development will not be experienced like running head-first into a wall, which is how it felt for me in 2008.

* * * *

My buddy.–Photo by Mark Aldrich

The photo here is of “my” duck, closer to fully grown in July, waddling up to me. He would take two steps at a time and then pause or plop down, then would take a couple more. First his right foot, then his left, then a stop and reset for another pair of steps. He did not come as close to us breadcrumb tossers as some of the others did that day, but he fought as valiantly as any duck that I would call mine should.

This is the photo that accompanies this blog, next to “The Gad About Town” name. He is my duck about town.

It is now December 2013 and I hope he is still with us, but in the warm south, ornery at his siblings every staggered step of the way.