Health

Firsts, Lasts. Somewhere in the Middle

Posted on by Mark Aldrich

There are many “not-yets” in this particular life. A lot of firsts yet to come. In my clever disguise as “me,” one consistent fact about my me has been its surprising lack of aplomb when doing something for the first time.

My reactions are aplomb-less because they are reactions, not responses, usually. It is often as small a matter as declaring out loud with my outdoors voice, “This is the first time that I have … .”

There is one thing I recall from my first day of kindergarten: Being shoved off a three-step cube that bridged two sides of the classroom together. I had decided to greet each new classmate with a handshake and that was my reward for acting like a grown-up. To this day, forty years later, I am rarely the first to offer a handshake in social situations, and on the annual occasion when I do offer my hand first, the party whose acquaintance I am making usually reinforces my reasons for not offering my hand first.

(A couple years ago, I met someone, stuck out my hand, and then watched as the guy looked at my hand, at his hand, and then back at my hand. He did not shake my hand. Had I challenged him to a duel or something? We did not become friends, and the one time we hung out with each other he spent several minutes verbally lusting for one of my female friends, which I ended by walking away after pointing out that she and I were friends. A first impression may not always be right, but they can be.)

I do not often wear life like a loose garment, as it says somewhere that I should, but there are exceptions: The moment I met my girlfriend. (Her name is Jen, by the way. I have not formally introduced her to you or you to her: Jen, readers; readers, Jen. This is probably because I consider her The Reader and have told her that “Dear Jen” is at the top of the first thing I wrote after she and I met, and that everything I have written since has been the body of that letter, including this website.)

I aspire to wear life like a loose garment. A condition that I have, spinal muscular atrophy, is helping. SMA is a genetic disease, but for me, an adult with the adult-onset version, it is not a life-shortening illness. It reduces my mobility. I move slowly and sometimes walk like I am a flat, two-dimensional, cartoon character. But I can walk. Sometimes, but not often, it hurts. I am not as sadly intimate with pain as so many others are, but what little I get to suffer as my muscles fight a silly fight against atrophying make life into a tight garment for me and every role I embrace—lover, writer, son, brother, friend, handshake specialist—goes out the nearest window.

There is a last first and I hope it is faaaaaar off. It is reported that W.H. Auden desired that his last words would be, “This has never happened to me before.” In a great speech, the basketball coach Jim Valvano explained life:

There are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. Number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.

 
A full day in a loose garment and life will offer no more rude handshakes. As the sadly late Stuart Scott used to say, “Boo-yah!”

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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? Does this layout make my ideas look good?

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The WordPress Daily Prompt for January 4 asks, “Tell us about your first day at something—your first day of school, first day of work, first day living on your own, first day blogging, first day as a parent, whatever.”

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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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The WordPress Daily Prompt for January 1 asks, “If you could spend the next year as someone radically different from the current ‘you’—a member of a different species, someone from a different gender or generation, etc.—who would you choose to be?”

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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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The WordPress Daily Prompt for December 9 asks, “You’re given unlimited funds to plan one day full of any and all luxuries you normally can’t afford. Tell us about your extravagant day with as much detail as possible.”

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