A reluctant member…

A wise sage once said, “I’d never join a club who would want me as a member. ” (That sage was Groucho Marx.) In 2018, that is exactly what happened to me, I joined the ALS club, truly one I never thought I’d ever join. Yet, here I am. And while I’m here, I might as well introduce you to the club and to a part of my personal history which, ironically, prepared me, somewhat, to become handicapped by virtue of my disease. I’ll start with my personal history.

Not long ago, I received an email newsletter from an acquaintance with physical disabilities. In it he highlighted a documentary called Crip Camp which is available now on Netflix. (Crip is short for cripple, the age old word for being permanently physically handicapped.) It’s a wonderfully produced documentary about a summer camp in the Catskills for physically handicapped teens, staffed by young hippies from New York City that takes place in the early ’70s. It was very nostalgic for me to see because of all the parallels I drew from my own experiences. I worked in camps for the both the mentally and physically handicapped, in the Catskill Mountains in the early ’70s. I worked with an extraordinary group of hippies who were dedicated to the campers. (I am, to this day, friends with many of the folks I worked with in those camps.)

As a counselor at Camp Lymelight, Upstate New York, circa 1973

There is a segment of the film that focuses on a NY State institution for the disabled called Willowbrook. I volunteered there while I was in high school. It’s hard to describe the almost inhumane conditions that existed for the residents. Most were concentrated in wards, stripped naked, perseverating in chairs or in corners. It truly was like walking into a horror movie. What was very upsetting was the idea that many of them were likely abandoned by not just their families, but also by the State that was responsible for their care. I remember going into a ward and the attendants for the ward would sit in a room with a large glass window and have little interaction with the residents. Also burned into my memory was feeding the residents. The only thing that distinguished one portion of food from another was its color. That experience committed me to a life of service and a career. It determined my pursuit of working at summer camps for the handicapped, my first career as a Special Education teacher then later on teaching adults. Willowbrook existed for many years until finally, it was exposed in the media (by a young and idealistic Geraldo Rivera) and it was dismantled.

People, Places, and History - Willowbrook State School - Wattpad
This is what I saw as a volunteer at Willowbrook.

Though I worked with children and young adults with disabilities for many years, nothing really prepared me to join the ALS community especially in such a short period of time. As my illness progressed, I started to experience some of the situations that people with physical disabilities deal with each day. The enigma being I had joined the ALS club but also that of the community of the physically disabled. The weird thing is that I can’t claim to be a member of the physical disabilities club because I have been disabled for a relatively short time whereas members of that community are lifelong, like those from Crip Camp. I am thankful that I can reap the benefits of their amazing work through antidiscrimination laws and accommodations.

Now, let me share some information about ALS. The discovery of the disease was made in 1869 by a French neurologist Dr. Jean Martin Charcot. Yet it wasn’t until 1929 did the world hear about it. It was “The Iron Man”, the indestructible Lou Gehrig, the one who played more consecutive games than any other ballplayer (until 1995 when Cal Ripken beat his record), that brought awareness of ALS to the world through his famous “I’m the luckiest man in the world” speech. Bringing awareness had another opportunity in 2014 when the “Ice Bucket Challenge” was held, creating visibility to the disease, along with it $115 million dollars in donations. Yet it’s still considered a rare disease, there is no cure, it’s debilitating and it’s terminal.

So how rare is it? There are approximately 15,000 people with ALS in the US with a rate of about 5,000 new cases every year. Most common age range is between 40 to 70 with an average age of 55. I know more than enough cases that affect people in their 20’s and 30’s. 90% of cases are “sporadic”, meaning no prior family history, totally out of the blue. More men than women get it and if you were in the military, you have a 50% greater chance of getting it than others. There also seems to be a prevalence with football players. It happens all over the world and doesn’t discriminate based on race, color, ethnicity, etc. Many people affected are usually healthy and active. There was a time in my life when friends called me “The Bull” because of my strength and endurance. It certainly didn’t discriminate against me. After I turned 61 years old, my family doctor sent me on a spate of health tests. All came back negative. I share my profile because I am the rule, not the exception.

“The Bull” and friends at the San Francisco New York Street Games Faire circa 1982

So why is this neuromuscular disease so hard to beat after 150 years? One reason is the disease hasn’t had much attention, until recently, by the pharmaceutical industry. It’s been said that it would cost about $2-3 billion in investments to find a cure for a meager 15,000 patient population. Not much of an incentive for a drug company looking for their next blockbuster. It is also quoted that ALS is not incurable, just underfunded. That’s not to say there isn’t anyone working on it. Actually, there are very reputable companies and non-profits working on it, for which I am very grateful to, likely not for me, but for those after me. Secondly, it’s alluded scientists in its origin. What makes cells die that turns off the communication between the brain and muscles? And when that happens, your muscles stop working and lay limp, making me, at least, feel like a boneless chicken. There are only four FDA approved drugs, each, at best, to slow the progress of the disease with uneven results, and still no cure. And those drugs have only been available over the last few years and are extremely expensive, unaffordable without medical insurance. Needless to say, ALS is very costly to maintain between doctor visits, cost of drugs, caregivers, and medical equipment. It can easily go over $100,000 per year, likely more. If there is any question why we need national health care and why including those with pre-existing conditions is so crucial to keep in the ACA. Many people ignore the possibility of millions being thrown out of health insurance, and are even against it until, of course, it happens to them. Let’s not wait and please advocate for it and vote for members of the House, Senate, and, of course, President to make it happen. Life is fickle and every day counts.

As I talk about ALS, Covid-19 is the focus of medical research right now to find a cure as soon as possible. And that is as it should be. It’s amazing what we can do when we have enough funding and brain power devoted to something important and immediate. That is a fantasy I have about ALS. If there were ever a time when the ALS research community had all the funding necessary, would we be able to discover how the disease starts and grows, how to stop it in its tracks no matter what stage you’re in, or, since we’re letting our minds free styling on this, actually reverse it so we can all get back to the lives we once had to bring up our kids, have a full retirement, or write the great American novel? We can all dream, can’t we? How else do you have goals to aim for? So to us get there, please donate to the ALS Association.

I now want to take a moment to honor those who came before me who succumbed to ALS specifically – may God rest their souls. I especially want to call out some celebrities who entertained us in music, theatrics, sports, science and politics. My thoughts are with Lou Gehrig (NY Yankees), Catfish Hunter (Oakland Athletics and NY Yankees), Dwight Clark (SF 49’ers), Steve Gleason (New Orleans Saints), Stephen Hillenburg (Creator of Spongebob Square Pants), Jon Stone (Co-creator of Sesame Street), Sam Shepard (actor and playwright), Charles Mingus (Jazz bassist and composer), Jacob Javits (former NY Rep and Senator), Stephen Hawkins (Physicist), and David Niven (Actor). And last, but not least, Mao Tse Tung. (Nixon even sent him a respirator as a gift.)

More to come…

13 thoughts on “A reluctant member…

  1. I knew about The Iron Horse, of course, and Stephen Hawking, but didn’t realize Mingus had ALS. Or Mao. As always, Harry, you have your eye on the prize — life itself, and living a full life by your own standards. I’m trying to get my pop to read your blog. You’re able to discuss the most serious and transcendent issues in a way that’s down to earth, serious without being grim, and humorous. (Boneless chicken, eh?) Which is what your friends expect from you no matter how dire the circumstances. Pop started on the technology entry, and when he asked me what bluetooth is, I thought, maybe go back to the beginning . . . . It’s good to know the good ship Harry W. sails on, even keeled, though the waters be rough.

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    1. And the question is : Do you still have that Brooklyn t-shirt? I think I remember it or maybe my memory ain’t what it used to be. Photo of Willowbrook, well done – excellent choice, we must never forget ! Sent shivers up my spine ! Blog =brilliant x0x0x0

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  2. And Catfish Hunter? I guess playing ball sports and working in HR are risky business, who knew. And please translate the tech to your dad, it’s a far cry from Westfield. Aww, just tell him I’m a science fiction writer and I made all this shit up.

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  3. Saw the crib camp review and immediately thought of you the the limelight crew!
    A dear family friend had ALS atypical, for many years. She was my first role model for disabilities.
    Sending love and hugs from the eastern Sierra!

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  4. Love reading each entry in your blog. Thank you for always being an inspiration just by being Harry, the mensch.
    Love, Barbara Nuzzi (Berger)

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  5. MS is also a neuromuscular disease and because so many more people have it, the drug companies are more motivated to “find a cure,” and research money is more available. However, everything is pointing away from a cure by drugs. And the word “cure” is being discussed as a reality in the near future. This has taken more than 30 years of funded and intense research. Perhaps some of this research will be applicable to ALS. Is your Myelin Sheath compromised with ALS?

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  6. There are many similarities to MS. It’s the death of the cells that make the Myelin Sheath that cut off the communication between brain and muscle. I first took an MRI before I had the EEG which isolated it to ALS. And it is common knowledge within the ALS community that a cure is far off and they are taking the approach that it’s a combination of things and thinking that maybe a cocktail approach is more likely.

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  7. Hi Harry — Your essays continue to be valuable ane appreciated.

    I didn’t know Sam Shepard had ALS. You do know, don’t you, that he made goo-goo eyes at me once? What a slut.

    Say Hi to Mary Ann and the kids. ğŸ’ž

    As ever,
    Uncle Donny

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