Years ago, I urged the young son of a friend to start using a theme song, as he always seemed to be humming something whenever he entered a room. He was 10 at the time and found it funny that something like this would be noticed, but since most 10-year-olds are egotistical, he loved that someone noticed a quirk. I told him that if he had a theme song, whenever people heard it in his absence they would think of him and wish for him to suddenly appear.
I do not know if my friend’s son now has a theme song that reminds his friends of him. I kind of hope not, since it might be insufferable, instead.
It is easy to brand oneself but it is quite hard to re-brand oneself; I have had several experiences with branding myself, being branded by others, and attempting to re-brand myself. And part of that has to do with having had a “signature beverage,” as the WordPress Daily Prompt for August 22 asks: “Captain Picard was into Earl Grey tea; mention the Dude and we think: White Russians. What’s your signature beverage—and how did it achieve that status?”
Having a signature anything usually infers affection from one’s friends towards you. When I was young, I hated getting labeled, in part because it never seemed affectionate at all and sometimes when I heard it, it meant that the next sound I was going to hear was a fist coming at my face. I started wearing glasses at age eight: “Four eyes.” Starting at about that same age, most years, I outgrew my Christmas clothes by spring, leaving me with exposed ankles for the rest of the school year. For some reason, this look, which revealed something but I do not know what about me—poverty? personal clothing cluelessness?—led to the most violent reactions from my school mates: “High waters!” was the exclamation and shoving me was frequently the action. I do not know why, and to this day I check the cuffs on my pants.
Thus, I loved having a “signature beverage” after I went to college. It was a label and it meant I belonged with some group (any group) somewhere (anywhere). And I controlled it. I picked it. I had friends and I was going places.
I have had bartenders who knew which beer I liked. I have had bartenders who made me the perfect martini: “Bone-dry,” I would say. “Allow the vodka and the vermouth to exchange pleasantries but not mingle or get each other’s phone number.” (I was a wit.) A twist of lemon peel. (“Olives? Do I look hungry?”) I have had liquor store proprietors fetch me my bottle upon seeing me enter.
Towards the end of my drinking era, several friends attempted to stage an intervention on my behalf. There is an expression in recovery that a “alcoholic will get you drunk before you get him sober,” and that sums up the intervention. We all drank. I am rarely a charismatic or convincing individual, but when I need to be …
These same friends, when we now go out to dinner, now order for me. They order a pitcher of whatever for themselves and order a Sprite for me. I can order it for myself, but it is a cool moment for all of us because, as secret as I wanted to keep my consumption years ago, it was no secret to them, and my sober life is no secret now. It is the best damn Sprite I have ever had. Each time.
I have a label—a “signature beverage”—a personal brand I can now enjoy.
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The WordPress Daily Prompt for August 21 asks, “If money were out of the equation, would you still work? If yes, why, and how much? If not, what would you do with your free time?” __________________________________
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 (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 years has been nothing but free time, however—yet I have never been quite so productive. I am the person for whom this question was written.
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 very much for three years and nine months, because I had not enjoyed it very much for three years and nine months too many. The manager and I decided that I no longer needed to consider him my boss and he 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 serious a firing.
The symptoms of my diagnosis had been prominent for most of the three years; 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 (which 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 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 is undetected and 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 very 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 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 was a writer.
From Elvis Costello’s 1983 album, Punch the Clock, “Everyday I Write the Book”:
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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.
(I have been that one before, actually—when I lived in the Midwest—and had some fun with it. Not that there are not Jewish people in Iowa, but one couple that I got to know had not met one or claimed to have not. Which makes me a member of another special interest group: I may be the only Jewish person you know who was the first Jewish person someone met!)
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 might be Friedreich’s ataxia or it might be and probably 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?
The WordPress Daily Prompt for August 20 asks, “The internet has recently been swept up by the ALS Ice Bucket Challenge. Is there a cause—social, political, cultural, or other—you passionately believe in? Tell us how you got involved—or why you don’t get involved.” The Daily Post helpfully provided a link to the ALS web page, but I also linked to an article explaining the “ice bucket challenge.”
I have seen this meme almost as frequently as I have seen videos of people dumping water on their heads. It is an old photo and is often repurposed to make fun of Americans.
This will be remembered as the summer of the “ice bucket challenge,” and after a few weeks of popularity, the backlash has begun. The plethora of videos of people, famous and not, giving a 15-second speech about amyotrophic lateral sclerosis, also known in the US as “Lou Gehrig’s Disease,” and then dumping a bucket of ice cubes and water on themselves “for charity” has led to memes attacking the popularity of the challenge, accusations of “slacktivism,” and some generalized online booing. When we look back at the ice bucket charity awareness campaign, in our heads we will hear someone say, “2014” and “I wonder whatever happened with that? Did they cure … what was it about again?”
Amyotrophic lateral sclerosis (ALS) is a rare disease. There are almost 7000 rare diseases, so approximately 30 million Americans, or 1 in 10, suffer from, cope with, accept, or fight against (sometimes all of these in a matter of an hour) a rare disease. A rare disease, as a concept, is not such a rare thing. If you know 10 people, you know a person with one. Multiple sclerosis and Alzheimer’s are also common rare diseases, a phrase I wish did not exist. And then there are the many, many forms of cancer, a disease that one can not wish—or work—hard enough to make it become rare.
It is not precisely known who started the ice bucket challenge or when, only that it started very recently, in 2014, and it was not about one particular health issue awareness charity. An early version, in New Zealand, was about cancer. (Because it is winter in New Zealand right now, the web site has a warning about doing the challenge outdoors.) A couple people in the United States adapted it to raise funds for ALS research and awareness. It took off from there.
Most of us are not medical researchers but most of us have known or do know someone with a illness or condition. Whether it is cancer, heart disease, or a rare disease, chronic or life-altering illness touches many of us and thus many of us know the powerless feeling that comes upon hearing such a diagnosis. We want to do something about it but we are not doctors. It is frustrating. I have seen the look in my mother’s eyes when talking about my disability. She hates the idea that I have something that she can do nothing about, like cook some chicken soup.
So we raise money for the charities that have been established to support the researchers who might possibly find the cure for the disease that affects your family member or friend. Almost every disease has a support community and researchers devoting time to study—at minimum—palliative care, or to even find cures. And that is where any controversy lies: How do I know that the dollar I donated is going towards a cure instead of merely buying lunch for the people who answer the phones and take the donations? The answer is, you don’t. As long as a charity makes its expenses public, I know that some of my donation may be buying lunch. I hope they are eating healthy. But I also know that some of my donation may be paying for the science-y stuff like test tubes, beakers, and a cure.
As with anything that has become popular suddenly, like a dance craze or a catch phrase, sometimes some part gets overlooked. Is everyone who is posting a video of themselves getting wet and icy explaining how to donate to the charity? Is every video participant in fact donating to the charity that they are raising awareness for? Some are not. Some have misinterpreted the whole thing as, “Get wet to not donate and challenge others to get wet, too.” That is “slacktivism,” but even slacktivism serves a public awareness purpose. There is no such thing as the social media police, even if I wish there was, so some people are simply showing off that they do not know what they are doing. The internet is good for that. The dollar that they do not spend on the charity they are not raising funds for is not a dollar that is making people sicker. They are merely getting wet.
ALS is a progressive, neurodegenerative disease that affects the nerve cells in the brain and spine. These cells deteriorate and die and stop sending messages to muscles anywhere and eventually everywhere in the body. The muscles atrophy and paralysis follows. It can strike at any age, and it can kill quickly.
Here is where my personal special interest group membership comes into play: The motor neurons in my spinal cord are deteriorating and dying and messages are no longer being sent or received in the muscles in my legs, which are slowly atrophying. I have a form of spinal muscle atrophy called “adult onset” or Type 4, and there are many links between SMA and ALS. They are siblings in the motor neuron disease family.
The majority of SMA patients are infants and children, so the majority of SMA patients are voiceless. (Here is a great blog written by a passionate activist with SMA: “Living with Spinal Muscular Atrophy.”) SMA is the number one genetic killer of infants. Few of us are adults. Those of us who are adults owe it to the children born with this disease to help find a cure. Any progress made in finding a cure for SMA will most likely be applicable to also finding a cure for ALS, and vice versa. They are that close in their origin and symptoms.
So if and when someone on Facebook or Twitter challenges you to dump a bucket of ice water on your head for charity, and believe me, they will, take up the challenge, mention ALS and SMA in the same breath, include the websites you want to benefit (ALS and SMA), and dump the water. And then donate to one or to both. Don’t be a slacktivist. Chris Mosher, below, used the challenge to bring attention to both diseases:
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The Gad About Town 