Hope And Grit: Crashing, Loss, “The FDA Failed Us!”

Coming home from Boston, I crashed into a colossal writer’s block. I had been on such a high for a week. A lifelong introvert, I had been social and interactive the whole time, probably talking more to people than I have in all my 41 years of sobriety. Coming home, I was reminded that I was not fully unpacked from moving my office – a mess of undifferentiated chaos. 3/4 emptied boxes of memorabilia, chachkies, and important and unimportant “stuff” uncharacteristically strewn in the room where I dropped my returning suitcases. And I had the hubris or stupidity to attempt to hit the ground running and go straight back to full-blast work.

That first weekend back, I indulged in a day of cheesemaking, and during a 90-minute stir, I binge-watched YouTube videos of one of my writing heroes and role models, Ta-Nehisi Coates. (I have read all of his books, but his one work of fiction, The Water Dancer, Knopf, 2019 may be one of my most admired, favorite novels of all time, a must-read!). In one of the videos, Coates told the story of a time writing for the Atlantic, he kept asking his editor for extension after extension after extension. Finally, his ever-patient editor lowered the boom and said decidedly (and not gently…) “NO! You turn it in tomorrow or you are done!” Coates went home and the article flooded out of him and was complete by the morning. Said Coates, “It was just fear…”

I felt only cowering shame, sheepishly showing up to my sessions with my writing angel, embarrassed and emptyhanded, detailing my block. She, without missing a beat gently said, “In all my years and decades in this industry, I have never met a writer who did not have occasional bouts of blockage. You are exhausted!” This is why we hire high-priced experts. The trick, or the challenge is to remember that they do in fact know more than we do, or know better. No small feat for those of us who never had a wise other to turn to! She also said, “You need to take time off from the book! And maybe you even need to have a break from the blogs, go into “summer re-runs” or “greatest hits?” I cringed… And also spun a little. Reviewing…OK, the blockage is fear, natural and common, and also weighted by profound fatigue. However, reluctantly I did agree, that I would take the month of June off from the book.

And as reluctantly, I did submit: for July and August I will go to an every other week “summer re-run blog” alternating weeks with a new one. So there, now I have told you. Meanwhile another diagnostic: twice in about 6 weeks my cheese did not cohere but came out like a bucket of beans instead of a tidy wheel. I have not had cheese failures in a while… there was another humbling clue and an undeniable indicator that she was right… Hooray for having a knowledgeable, kindly authoritative guiding other, protecting us from ourselves, our unbridled inclinations, from crashing and burning. Something we should have had all along.

In one of the interviews, a member of Coates’ live audience asked him something I don’t remember about hope. Coates answered unhesitatingly that he is a journalist, and hope is not his medium, not his paradigm. Journalists deal not with feelings but with action items. The questioner persisted, “Then what?” Coates’ reply was unhesitating, we must work tirelessly to make this world what we would want it to be for our children. For myself I have always striven to do both, probably why I end up periodically in the depleted state I recently have found myself.

Hope or What?

By now several years have passed since a client of mine lost her partner to ALS (amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease). Like most of us, I knew little about it, except that it is a horrible, fatal illness where one gradually (or not so gradually) loses function until the body completely dies. It always seemed unimaginably hideous to me. I did not yet know this client during the two years plus that she lovingly cared for him from his diagnosis to the painful end. Insult to injury, he was a war veteran who was exposed to toxic chemicals while on active duty, so he was failed by government agency after government agency, including the Veterans Administration. Only recently, now years after his passing, she received the bitter news, that in the drug clinical trial they had participated in, he had received the placebo. Tragically, the placebo recipients were given nothing after the trial, not even a “thank you for your service…” (Unlike many placebo trials where after it ends, the placebo subjects receive a round of the treatment). Or they have gotten something. She told me about a new film (I Am ALS)

Loss

I am very much not a movie person. Whether it is that I am too stingy with my reading time, or it is unusual for me to find something that holds my attention for the requisite 90 minutes or more. The exception is when I have a long stir of the cheese vat, so I am rooted in one place with my mind free for sometimes 60 or 90 minutes or more. This was a time when my recipe called for 90 minutes plus stirring the vat. So, I looked up the movie, a roughly 90-minute documentary available for streaming on Amazon Prime. It was the quickest 90-minute stir I have ever done.

It was the story of a young man, in his early 40’s as the film begins. You see scenes of him dancing wildly at his wedding, out running, skiing, chasing his toddler son down the beach, vital and athletic, when he finds he has trouble opening and closing his left hand. He walks out of what they imagined was a brief checkup, with a diagnosis of ALS, and a prediction of 6 months to live. Needless to say, he and his young wife were shocked. She was about to give birth to their second child, their first being a lively two-year-old boy. The film is their story.

I have always told my husband, if I ever can’t move, I will want to go to Switzerland and go to sleep. I would not be able to bear having my body go out on me, unlike my Holocaust-surviving father who after being first a chef and then a cantor, at 50 was diagnosed with tongue cancer. The surgery cost him two-thirds of his tongue which was re-constructed with muscle from his thigh, but sans taste buds of course. And a significant reconstruction of his face as well. Always a good-looking man, he looked different. He did re-learn how to speak although his speech was never the same. Then only a few years later he was diagnosed with severe throat cancer, again major surgery and much radiation. Becoming able to sing again took a while, and of course, was never the same. He was unable to swallow anything but blended pureed food. So, for the final 40+ years of his life, he was unable to taste or swallow. Food was no longer any sort of pleasure, and ultimately the last ten years or so he resorted to a feeding tube. Perhaps his history of trauma and neglect trained him for such endurance. Could I have endured that? I can hardly imagine.

ALS is the story of loss, loss of control, function, autonomy, and any real pleasure in the body. For the character in the movie, it was the loss of much pleasure. For many of us taking pleasure in the body is a learned, often hard-earned experience, especially when there is a history of eating disorder, addiction, or some sort of sexual trauma to the body. Imagining the loss of it, is again, hard to imagine for me. Watching this movie, I had to rethink that. The people in the movie had a remarkable mix of hope and grit, positive thinking in the face of tremendous challenges, and tireless determination and generosity.

The FDA Failed Us!

Ironically, at one point in the film, the couple and other ALS couples lamented and discussed how the FDA (the US Food and Drug Administration) had “failed them” with how they regulated and failed to support ALS treatment research. A relatively unknown and under-publicized if devastating illness, it is sadly neglected and underfunded, as are it’s too often quietly lonely sufferers. It was particularly ironic to me because I happened to watch it on the very day that that same FDA had voted down the clinical use of MDMA for MDMA Assisted psychotherapy for PTSD. And the FDA was not the only government agency that failed and neglected the ALS folks. Not mentioned in the movie, was the Veterans Administration, and the recognized link between ALS and some toxic war chemicals such as my client’s partner was exposed to. And the agency of State Disability Insurance incomprehensibly has a 5-month wait period before they start issuing disability checks to ALS patients. As in the case of the film’s protagonist, who had a six-month life expectancy what is the sufferer to do who has no means and precious little time left?

My few complaints about the movie were that virtually everyone was white, with the exception of President Obama, a handful of East Indian doctors, and one patient with a perhaps Spanish surname. The rest were seemingly privileged white folk, who all apparently had partners and or family. Neglected or not mentioned were a vast population of people of color, less means, or no loved one to take on the formidable labor of love, of their care. They did however reference, the success of the HIV/AIDS support community (of which I can boast I was a long-time activist) in succeeding in the fight against AIDS and the development of life-extending, life-normalizing medications.

Rare for me, I highly recommend this movie, and it achieves what I long aspire to: a balance and harmony of hope and grit. Admittedly I could not stop crying, and I did successfully keep my tears from falling into the cheese vat. I did, however, for whatever reason, end up with a bucket of beans… Oh well.

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