Oh! The Places You Won’t Go

Mistakes suck. Errors do, too.

Adverbs will never go hungry for a lack of work in many writers’ drafts, including mine, but that part of speech demands erasure whenever one encounters it. Adverbs are the empty calories of the English language: They are tasty, and they appear to be helpful when we want to bend a verb to do our verbal bidding and guide our eager reader(s) to share our thought-patterns, when context and the verb itself are capable of handling the task just fine on their own. They are potato chips and cotton candy blended into a linguistic smoothie.

All of the personal errors in my history can be described with an adverb, colorfully. Merely an adverb minus a verb or other details, so no personal stuff, no self-incriminating or embarrassing information might be revealed: complacently, awkwardly, abruptly, vigorously, languorously, braggingly, disgustingly, violently, wrongly. Timidly. Brazenly. Very. Many “verys” in there.
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Listen, Do You Want to Know a Secret?

The Atlantic Ocean. Each one of those tiny dots in the photo above is a person with a life, a voice, loved ones, losses. Sunburns.

We are standing, you and I, in front of the “Beach Hut” at Smith Point County Park on the South Shore of Long Island. It is 2014, one of the more recent years in history. For much of my adult life, I have sat here internally convinced that I do not like “the beach.” I do not remember when I convinced myself of this. I do not remember an unpleasant beach incident that convinced me that I possessed this piece of self-knowledge about my … self.
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‘Making Our Voices Heard’: Rare Disease Day 2016

Last year, when I wrote about Rare Disease Day, a friend asked, tongue firmly in cheek, “Why not have Rare Disease Day on February 29th?” I admit that when I learned about Rare Disease Day several years ago, after I was diagnosed with one, a similar joke crossed my mind. Each year, the last day in February is the date for International Rare Disease Day, and Leap Day, that quadrennial day, is a good one for us to remind the world that rare diseases are not at all rare.

Today, February 29, is International Rare Disease Day, and “Making the voice of rare diseases heard” is this year’s slogan.

Rare Disease Day was first established in 2008 by EURODIS, the European Rare Disease Organization. In 2009, the National Organization for Rare Disorders (NORD) in the United States joined the effort to educate the public.
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Upside Down

For a year I lived with a diagnosis of Friedreich’s ataxia, a genetic, neuromuscular disease whose symptoms are quite close to mine.

My symptoms: Since 2005 I have been aware, at first dimly, of a mobility disorder developing in me; today, in 2015, I walk with a cane or impressive walking stick, stiffly, like I am wearing very tight jeans; I 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 not knowing where I am in the world contributes moments of comedy to my day. I was in my mid-30s when the symptoms began to attract my attention, which means the symptoms began to appear several years earlier.

Instead, it is very likely that I have a disease called spinal muscular atrophy, but I am grateful for that year in which I thought I had Friedreich’s ataxia. This is because all that I knew upon learning my diagnosis was my diagnosis—Dr. M, my neurologst, did not even hand me a tri-fold pamphlet, “So You Have a Potentially Life-Shortening Condition,” if such an item is even available—but there were online groups ready to embrace someone like me.
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I’ve Always Depended on …

Angry, barking angry. “Ass-hat angry,” neither of my grandfathers would have called it, because neither of my grandfathers ever said “ass-hat.” The kind of angry that both of my departed grandfathers in the hereafter would have been forced to come up with pretend back-country colloquialisms to describe their grandson, also known as me. That frustrated and angry.

The story has a happy ending, of course. And the anger departed the moment it was expressed at the anonymous Newark-ian who knocked me over. It was a night in which Jen and I discovered that there are no short-cuts on the path to meeting good people.
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ALS, SMA, and Nice Ice

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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My Mentor, My Duck; Five Photos, Five Stories

Can a duck be a mentor? To creatures other than other ducks?

If you are reading this on a Windows browser, there should be a logo on left side of the tab at top, a little green-brown-yellow blob. I first placed it there as an inside joke with myself, but the story is worth sharing. The full-size photo is at the top. (Most of this first appeared in a post from December 2013, “A Duck About Town.”)

It is a photo of a duck. My mentor.
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Trains, Trains, and Buses

Angry, barking angry. “Ass-hat angry,” neither of my grandfathers would have called it, because neither of my grandfathers ever said “ass-hat.” So angry that both of my departed grandfathers in the hereafter would have been forced to come up with pretend back-country colloquialisms to describe their grandson, also known as me. That frustrated and angry.

The story has a happy ending, of course. And the anger departed the moment it was expressed at the anonymous Newark-ian who knocked me over Thursday night.
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