disability | The Gad About Town

Pathies: Sym- vs. Em-

Posted on January 1, 2015 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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Daily Prompt: Ice Water in My Veins

Posted on August 20, 2014 by Mark Aldrich

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: