On Not Getting Better

“Getting better always starts in fantasy, in our imagining better lives for ourselves; it is the private utopianism of everyday life, the way we formulate our wishes, the way we picture our potential.” — Adam Phillips, On Getting Better

“We cannot separate life from the stories we tell ourselves. . . .But those stories are distorted by failing bodies, failing memories, and lapses, relapses, repeated delays in the transmission of signals to a body that forgets and remembers.” –Shahd Alshammari, Head Above Water: Reflections on Illness

“…fantasies can contain lies, falsehoods, misdirections, deceptions, and number of any number of conscious or unconscious delusions; yet the appearance of these dishonesties in our fantasies nonetheless tends very much to reflect things we honestly wish or desire.” –Jordan Stein, Fantasies of Nina Simone

I mentioned in my last post that I had been part of an expanded access program for a drug that is a modification of a treatment for ALS. The FDA declined the application to use this drug as a treatment for ataxia, but the pharma company was making it available at no cost anyway. Nonetheless, one of the known side effects of the drug is nausea, which hit me pretty hard. I was nauseated for the entire week of Thanksgiving — which, suffice it to say, wasn’t awesome. It was not a hard call — the drug promised at most to slow the progression of the disease, which in studies had discussed in terms of 3-year outcomes. That is, the promise of the drug wasn’t to improve balance or coordination but to reduce the speed at which things got bad.

The fantasy of getting better is seductive and irreducible, however. I was online and saw a testimonial from someone on troriluzole (the drug I was recently on) and this person claimed s/he got her/his balance back due to the drug. I am as glad as the the next person for people who can tolerate treatments and do well on them, but this particular claim suggested to me how much we depend on narratives — actually fantasies — of getting better, if not cure. Even the drug makers didn’t claim that it would ameliorate symptoms. To be fair, I would say that I think that the rush to think we’re getting better is in part an epistemological problem: even if, best case, the rate of decline has been reduced, it can be hard to tell oneself or others a story about that particular counterfactual: “You may think I walk like a drunk giraffe now, but wait till you see that person who I might have been.” And I know how seductive such fantasies of getting better can be — a few years ago when I was in a first-stage drug trial for an ataxia treatment, I imagined for a day that some functions that had long passed had returned. They had not — as I learned when I tripped up (yes, up) an escalator on our way home from the treatment weekend. You can imagine my chagrin when I subsequently learned that in the trial we were being given a sub-clinical dose, one that was a fraction of the dose they thought might be effective in humans anyway.

That is not to say that all dreams of getting better are equal. We have witnessed in the last year a profound re-scaling of the scope of science-based health care in this country. This includes the cuts to Medicaid — which, let us recall, is a subsidy to the entire system, not simply a support for “poor people” — but even more the reformulation of what counts as a professional degree, which will put education in many medical professions like nursing and physical therapy — not to mention others that we depend upon to support medical care — like social work — out of reach. The gap in the health space is also a gap in the narrative space, which is going to leave those with conditions that are expensive to treat or without effective treatment subject to the whims of the health grifters and “wellness influencers” who inevitably spread misinformation and then sell the remedy, long “overlooked” by medical science — cf. the enshittification of everything. As a case in point, recently I did a search on Amazon for titles about Machado-Joseph disease, also known as spinocerebellar ataxia-3 (SCA-3) (the condition that I have). The title that came up first was The Root Cause Healing System A Patient & Practitioner Guide to Reversing Machado–Joseph Disease Naturally, a text that claims that one can reverse (yes, reverse) MJD/SCA-3 by keeping a good gut biome, eating a good diet, and exercising. (The author is a PhD, not an MD, nurse or nurse practitioner. Nothing against Ph.D’s of course, but I doubt even this person would go to chair of the philosophy department for arthroscopic surgery.) Of course, advice about a being attuned to healthy gut biome or “good diets” and exercise is something we would want to follow anyway. But this grifter wants me to pay $15 times be gaslit about the origins and treatment of the debilitating condition that I have and s/he likely hasn’t ever even encountered. (Stats are imprecise on this, but SCA-3 (the most prevalent kind of ataxia) suggest that ALS is 1.5 – 3 times MORE prevalent.) If a doctor gave this advice they could be held criminally liable for malpractice. But the “wellness influencer” or “thought leader” simply has to put some fine print at the front of the book about it just being for personal use — you know, the way that Fox News says they are “entertainment” whenever they are caught in a lie that could render them financially liable — and that shields them from any accountability.

But if “not getting better” is the existential tempo of life with a degenerative disease, it also the condition under which the current administration wants you to grope for answers about your health as you reach for the latest supplement regimen that has nothing to do with what ails you, but is brought to you by the grifter-bro who has abs. This entire architecture of wellness is of a piece with what Astra Taylor and Naomi Klein have called “End Times Fascism,” the movement by which the administration accelerates the destruction of what were once imagined to be shared ideals or public goods — public health, scientific research, disaster preparedness — as a way to supplement — culturally, discursively, financially — the reliance on privatized “treatments,” and the build-up of social escape pods available only to select techbros and billionaires (think Musk and his vision of Mars): From Taylor and Klein: “Trump’s furious attacks on every structure designed to protect the public from diseases, dangerous foods and disasters – even to tell the public when disasters are headed their way – strengthen the case for prepperism [preparing of the apocalypse] at both the high and low ends, all while creating myriad new opportunities for privatization and profiteering by the oligarchs powering this rapid-fire unmaking of the social and regulatory state.”

Adam Philips once commented that “Clearly any politics not bent on improving society would not be politics” (On Getting Better, ix). I leave it to others to figure out what this is if not politics. But something different or better has yet to come along: now, to paraphrase Gramsci, is the time of morbid symptoms.