First of all, I regret having started this ALS Diary to begin with. I must have expected it to elicit some ultimate profundity, which of course it cannot. I expected it to confer a sense of control over the process of decline; but that sense instead morphed into a kind of self-imposed tyranny. I have to keep it up just to confirm that I can keep it up. Finally, I thought it might prove useful for other sufferers to follow my experience of decline along with the feelings it elicits. Unfortunately, my disease is so stealthy that I find myself writing the same thing over and over for months: “it’s worse, but I can still walk with the support of a walker, still swim, though not as far, before I’m out of breath.” I was diagnosed the first of March, but I had known the symptoms for at least a year before that. Now it’s the first week of November. In a few more months, I can estimate that I’ve been in the grip of ALS for two years. I gather that’s around the median life expectancy for an ALS patient my age. Maybe my steady regime of exercise has paid off in extended mobility. Maybe it does make sense to keep tabs on myself. I pity the poor reader if any there be. What I observe now is my exhaustion. I feel a weight on my chest and even the exertion of sitting and talking makes me sweat.
The good news, if I can call it that, is that I’m not depressed or in despair. But alas, a reader reading my blog posts to this effect is likely to get just the opposite message: I protest too much! That makes me think that I should drop the subject of dying and just let my mind range freely. When I do that, I get the feeling that I’ve abandoned my duty to bear witness. Either way, it feels wrong. So what keeps me at it? I suppose it’s the aforesaid desire for control, the desire to be the master of my own mind to the very end. I feel pity for the poor Alzheimer’s or dementia patients. By writing, I can confirm that I’m not like them.
I’m truly grateful for all the little kindnesses that my wife bestows upon me. She’s eager to see to it that I have cold water at hand and that the books I read are where I need them. As early as next year, it might be time to stop eating and enter hospice care. This is the same as my quitting smoking when we married and started a family. I had been a stop-and-start-again smoker for decades. Responsibility to my family made me quit for good. It was of course best for me, but I might have gone on relapsing and asking myself, why quit now and not after this tricky conference or tough semester? I quit for my family, but it was for my own good. Anyone could see that the two things were, and are, inseparable. Likewise when it comes to kicking the habit of living. I don’t want my family to feel guilty about my sacrifice, and I don’t want them to feel as if I’ve checked out irresponsibly without thinking about them. They won’t talk to me about this. I’ll do what is best for us all. I have a calm and reassuring sense that we understand one another without talking about it. It’s a source of quiet happiness. I’m like a child reassured again of being in loving hands.
But why is it that I’m driven to try to inspire others to comprehend the world-changing ideas that I didn’t act on? How absurd is that! Here is what I wrote to the Substack writer Ross Elliot Barkan in reply to his summing up of what currently passes for the Leftist opposition:
“Good overview. But we need an IDEAL TYPE of a coherent leftist-socialist program. First point : include a demand to expropriate monopolistic sectors of the economy. Pace Ross’s depiction, this is NOT a prevalent view in the DSA, which accordingly lags behind legal objections raised against Amazon or finance capital after 2008. Second point: the Left MUST insist at every opportunity that illegal immigration and climate change are and will increasingly manifest as two sides of the same uncontrolled neoliberal globalization. Leftist analysis suffers from a “national gaze” analogous to the “male gaze” in cinema. To combat our national shortsightedness, I recommend a collection of essays by Alain Badiou, A New Dawn for Politics—it’s the only recent political voice I know of that understands the obvious implications of globalization.”
What was I thinking? That I would become the hospice equivalent of the ailing imprisoned Gramsci, scrawling in his prison notebooks? It’s absurd; but like a madman, I’m convinced that no one around me sees the precipice up ahead. Am I generalizing from my personal precipice? No. It’s really ahead of us all: the looming death of our humane culture.
Now I wish that I could use special effects to cinematize the visionary insights of my final weeks. Yes, current trends will continue: 1) the population explosion, above all in Africa; 2) the globalization of trade which undermines archaic economies such as those of the global South; 3) the expenditure of natural resources with the attendant degradation of the global environment; 4) the increasing flow of refugees from a failed climate and from failed states to the borders of the wealthier, more stable countries of the North; and 5) the rise of brutal regimes intent on blocking immigrants, and vicious falsehoods like the Great Replacement Theory recently promoted by Elon Musk. It’s a vicious circle with no exit until we change the whole global system. That has to begin with the expropriation of the Elon Musks.
I wish I could evoke these interrelated developments by means of simulated images as spectacular as those enabled by the Webb Telescope or by cellular microscopy. The image would use color and pattern to show the global transformation from the erstwhile multi-centered world to the explosion and expansion of the dynamic European and American capitalist-industrial-high-tech system that erodes or destroys all the smaller centers of civilization and trade, thereby attracting and absorbing the human remnants of all the vanquished societies. If the image were ingeniously articulated, it would reveal to the viewer that those strangers crowding our gates and borders are like us subjects of the very same forces to which we thoughtlessly acquiesce. Those vanquished foreign centers of civilization are no other than our abandoned downtowns. Those immigrants are variants of our displaced small-town residents, forced either to abandon community or lose themselves in drugs and dissolution. Looking at this synthesized image as if you were viewing Earth from outer space, you could see the macrocosmic transformation and then zoom in to see the same process in the microcosms of regions, towns, and neighborhoods.
Signed,
Andrew (Weeks)
Normal Thoughts 
Interesting
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