Spinal muscular atrophy

Pathies: Sym- vs. Em-

Posted on by Mark Aldrich

A friend used to say, “If everyone could throw their problems onto a table in the middle of the room and then listen to each other’s stories, everyone would go crazy trying to make sure they got their own problem back.”

Until this past year, I was unfamiliar with the term “spoonie” or the “spoon theory.” For those with chronic, painful and pain-filled conditions and illness, the term has become incredibly popular in the last half-decade, because it depicts better than most analogies what it is like to live with a chronic illness or disability.

A writer named Christine Miserandino is credited with inventing the analogy on her terrifically-named website, But You Don’t Look Sick. She has lupus and tells a story about how she explained to her best friend what her world is like. She handed the friend a dozen spoons and explained that it is now the start of a new day and that different tasks would cost a spoon each. When she reveals that “getting up and showering” would cost a couple spoons, the point started to become clear.

From “The Spoon Theory” :

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons.” But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

People with chronic pain have a talent for analogy that perhaps they did not know they had until they learned that they needed to find a way to communicate what life feels like for them. They become good explainers, because the quality of their life depends on it.

Because pain is one of the most personal of sensations, or appears to be—a burn might feel the same for you as it feels or me, but we only have our anecdotes to compare and weigh against one another; meanwhile, I’m on fire!—because perception is personal and pain is utterly a perception and not a measurable reality, those who suffer chronic pain are left with their own talent for creating analogies to make others understand their day, their night, their world. Anyone who has visited a pain specialist (I have not) is familiar with the range of sketched faces that they must circle to communicate how much pain they are in. I have a friend with fibromyalgia, and I remember her saying things like, “My back is at a 7, but my legs are a 5.”

Good sensations seem to be almost universal; our senses of humor may differ, but a laugh is a laugh. Your feet might be ticklish while my arms might be, but a tickle is the same for us both. (Unless it causes pain, which it might for someone with fibromyalgia.) As much as I love comedy and enjoy making people laugh, I have not yet found myself explaining why I found that one punch-line made me laugh with a barely audible “Heh” (call it a 4 on the laugh scale that does not exist) and another one got a laugh from the back of my throat.

Until July 15, 2010, I did not have much skill with empathy. Sympathy, sure. Sympathy is an “attaboy” given to someone bearing up under a weight without offering to assist in lifting it at all. Sympathy was something I gave to someone with the expectation that I would be thanked by the injured party. “Wow, that sucks,” is sympathy, and before the other person can continue talking and telling the sympathetic person any details, the sympathetic person has moved on, having rescued them with an “attaboy” of sympathy.

Empathy is love. It is saying to someone, “I do not know what this is like. Tell me,” and then listening. Of the two “‘pathies,” it is the one that requires more effort but can bring greater rewards.

If my problems were in the center of the room—my diminished mobility and two hands that are becoming clubs (I can tie shoelaces, but only if I want to eat up a day)—I would take them back. And maybe they have given me a modicum of empathy.

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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? Sympathy? Empathy? Does this layout make my ideas look good?

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Punching Out

Posted on by Mark Aldrich

I have my final pay stub somewhere around here, detached long ago from the check whose sum it explained. It dates from late June 2010 and I should bronze it like a baby’s shoes.

As it is for me with many other aspects of a common American—well, not just American, human—life, my relationship with work is, um, not uncomplicated. Off the top of my head, from age 15 till 40 I held 14 different clock-punching jobs from almost as many employers, with a couple employers that hired me more than once. Not included in the list is the newspaper reporter job I quit via fax machine the morning of day one, because I really am a terrible employee and I guess I wanted to prove it quickly, and the one time I was paid for an acting gig. (I was onstage with a cardboard box on my head and a ukelele in my hands—it was a little avant garde, and getting paid five bucks made it even more so.)

Life for me for the last four-and-a-half years has been nothing but free time, yet I have never been quite so productive. I will explain.

I have not been another person’s employee since the summer of 2010, when I was asked to leave my last job, which I had not enjoyed—with pay—for a total of three years and nine months, which is three years and nine months too many. The manager and I decided (quite amicably) that I no longer needed to consider him my boss and that he, equally so, no longer needed to consider himself my boss. On that much we agreed, so we parted company and even deleted each other from one another’s Facebook. It was that complete a firing.

The symptoms of my diagnosis had been prominent for most of the three years and nine months; I started walking with a cane in 2007. When the symptoms of adult spinal muscular atrophy first showed, they came suddenly. Only recently have I learned that this is a common experience among people with neurodegenerative diseases. When walking becomes difficult—in my case because the nerves that had been sending ever dimmer signals to my legs (whose muscles had started to atrophy from receiving ever dimmer signals, and thus were not being asked to work)—the end of normal walking comes as if everything had been just fine one day, and the next day it as if one’s shoes had been nailed to the ground or one’s co-workers had painted the floor with superglue. (I must not have liked the job very much, if I thought such a prank was possible!) It is sudden and scary when the progression of deterioration goes undetected and is even undetectable until the day it is completely not.

Since my last job was not a high-paying one and did not offer free or simply less expensive health insurance, I had none. So I neither spoke with anyone about my developing deterioration, nor did anyone suggest I do so. But being suddenly unemployed (so thoroughly unemployed my boss had unfriended me, please recall) meant I could get poor people’s health insurance, Medicaid. (This is before the Affordable Health Care Act, which also has in fact benefited me.)

With Medicaid came the, “Hey, doc, what gives with my legs?” conversation, and, eventually, the answer(s). With the answers came Social Security Disability, which is my sole income as of right now. If I had had insurance at an earlier date, perhaps I would have received the diagnosis and declaration of disability earlier and been able to leave my last employer on better terms. Entertaining such hypotheticals is a highly un-useful pastime, I find.

My barber asked me recently, “What do you do?” And I replied, “I am a retiree.” As I have written elsewhere, I am an alcoholic in recovery, sober several years, and I am living “Mark’s Life, Version 2.0.” The universe has afforded me a second life (not the famous online virtual community, a real second life), and the opportunity is not being wasted. I am writing, every day, on a schedule of my own fashioning, speaking with and sometimes counseling people.

There are three jobs every person in recovery thinks of pursuing, as I certainly did: becoming a counselor (but the hours of training are arduous), becoming a truck driver (perhaps because a desire to escape partly fueled the addiction and does not leave), and, after being told by enough people, “You oughta write a book about your stories,” a writer. Luckily, I already am a writer. My days are mine, every day.

(This is a revision of a column from August 21, 2014.)

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Guilty of White

Posted on by Mark Aldrich

The lottery that I won at 6:37 p.m. on November 18, 1968, was not the product of any hard work on my part. It was not a reward for playing fairly or for especially clean living, nor was it awarded to me for playing by the rules and earning my way.

It was a scratch-off ticket, generated at random, and someone else could have gotten it just as easily as I did. Like the service at a lottery counter in a gas station, life is a first-come, first-served proposition. It was a scratch-off, and, my gosh, did I win a nice jackpot.

If reincarnation existed, one could say that someone else may have deserved this life more than I did or do, and one could certainly argue that someone else might have done a better job with it than I have so far, but it is mine. It is the golden ticket.

The lottery that I won paid off immediately: I am white in a country that treats this minor genetic condition like it is something one diligently worked for and earned. And I am male. I am heterosexual. This world and this country rewards the bearers of those accidental tickets pretty generously, too. When I was a child, my family was middle class in income if not status in a country and at a time when being in the middle of middle-class life in America meant one was living more comfortably than three-fifths of the residents of the rest of the world. And citizens in this country treat that privilege like a victory over immediate enemies rather than the several-generation accumulation of incidents that it is.

Education? Paid for through high school by virtue of being born where I was. By which I do not mean the Spackenkill school district. Nor Poughkeepsie. Not even New York State. Being born in America in 1968 meant an education. (The states were not yet privatizing education or dictating their own local test-versions of education, so I benefited from learning when the dinosaurs existed and the one main reason for the Civil War.) Thanks to my parents, my mom especially, I do not remember the experience of learning how to read or count, because I was taught before my earliest memory (age two and a half) is time-stamped.

Perhaps it is a bit of speculative science fiction to offer the idea that none of these matters are in and of themselves good, righteous, holy, or even earned things. I could have been born in a country that does not privilege the pink pigment of white skin. Or I could have been born in this country but not white. We could have lived in a country where money did not provide some piece of status and “our type” might have been punished at random moments. My mother was born and raised in America, but she had cousins in “the old country” (near Minsk) who were exterminated. They had money.

So I know that I am racist, sexist, whatever-ist. By virtue of being born white, male, and middle class in America in the late 1960s, how could I not be? The day that I walk through (every damn day) is a different day than any woman, black person, gay person—any member of a minority group randomly pre-selected according to these criteria by society—walks through. And the sad, simple fact is that it is a luxury for me to even type that sentence or play with that thought. I do not need to consider what life is like for me, what my day is like, because no power group makes me aware of it.

Oh, sure, it’s society’s rules and some people seem to know how to play by them. “If you don’t commit any crimes, what do you have to worry about?” And that is the thing: I don’t. Simply because I am guilty of white, guilty as charged of male. I am a born member of the power elite, me with my $11,000 annual disability income.

Why does anyone march? Or protest? Or agitate? Or riot, finally? Because if you told me that I had “earned” the genetic anomaly that is taking my legs away, which I did not, not any more than I earned being white or heterosexual, I would attack you with my cane, with every fiber of my being.

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