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.”
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:
Slacktivist, had not heard that one. Well written post, so many causes that can be chosen from, key is to pick one and actually do something for it. Thanks for sharing
LikeLiked by 1 person
Very well said. And well timed in my case as I was musing whether to include the ice bucket challenge in my post for tomorrow. Social media is bombarding us with a plethora of causes and we cannot possibly keep up with or donate to every single one of them. But picking what is close to our heart or most resonates should be a no brainer. Today it’s you struggling. Tomorrow it will be me. Donating to research does matter (and I know, am married to a cancer researcher).
LikeLiked by 1 person
It is hard to have a disease that has no public awareness. You want to care for the other diseases, but you find yourself thinking that your or in my case, my mother’s disease is as important. My mother had–she passed away at age 90–Retinitis Pigmentosa. It is the disease of the retina. She began losing her sight when she was 16 and was totally blind–not legally where people can still read–by age 30. People talked at her or through me. I spent my years growing up explaining to people that she’s blind and not deaf. I prayed to god for her. Put pieces of paper in the Kotel for her. But nothing helped. People say that god only gives you what you can bear. I don’t know if I agree. But I’ve stopped praying.
LikeLiked by 1 person
I also don’t know if I agree that one is given what one is strong enough to bear; some people are given an awful lot to bear sometimes. Perhaps most people are given an awful lot to bear. I’m sorry about to the loss of your mother.
I wish that all those who are fighting diseases and supporting the sick had the creativity and pushiness of some of the activists fighting for research funds for some of the diseases. If only retinitis pigmentosa had a telethon. If more people become aware of the idea of rare diseases (that 10% of the population has one of the 7000 diseases), that a rare disease is not always a life-ending diagnosis but often is a life-altering one (blindness, losing the ability to walk), and that more research might mean fewer sufferers, well, for me, that is my challenge, I think.
Thank you, Susanne, for your ever-kind words and support.
A fine post detailing many aspects of the ice bucket challenge; and what may be done concurrently with taking up the challenge…
If I may contribute my two-cents’ worth – He died this summer. The person who started the ice bucket challenge was Cory Griffin, along with a partner Peter Frates. As we all know, it went viral in the summer of 2014; unfortunately he died that same summer on Aug.16 (of drowning from a diving accident), just hours after he raised $100,000.oo for ALS. (He was only 27.) He and Frates also started the ice bucket challenge close to home in 2012 (through Team Frate Train); Peter Frates himself had ALS.
LikeLiked by 1 person
Very interesting learning more about SMA and how it is related to ALS. I didn’t realize they were so similar. Thank you for raising more awareness about rare diseases and encouraging others to become more aware of the illnesses those around them might be suffering from.
It’s excellent that you are giving a voice to so many others you have never even met- and children with SMA who cannot even speak!
LikeLiked by 1 person