A friend asked me if I planned to write an essay on what it’s like to be me, what does it feel like knowing my death isn’t far off, and someone who has always defined himself by his mind, which is beginning to fail him. I had to say, honestly, I don’t know what it feels like, I haven’t
I’ve begun gathering notes for the essay. Perhaps it never gets beyond that.
Things to which I've said good-bye:
Driving. I don't really miss it, although I thought it would be a catastrophic blow. I'm content to let others drive, or to take an Uber or Lyft.
Cigarettes. After 59 years of heavy smoking, I haven't had a cigarette in more than two years. I haven't quit, I'm just not smoking today.
Alcohol and Caffeine. Either will trigger an irresistible urge to smoke. Alcohol isn't that important. Coffee is seven basic food groups all on its own.
Walking. I have a walker I use to get around the house, but outside the house it's a chore. I tire quickly. Other than at home, I use a wheelchair.
Caring about the news. I keep current through MSNBC, Fox, NYT, WSJ and a couple of Spanish-language outlets. I prefer watching Ancient Aliens because it's far more credible.
Things that are happening I wish I didn’t understand:
I am experiencing expressive aphasia. I can form the complete thought, but it is too difficult, too often, to locate and use the necessary words. Fortunately, the first time I experienced this, at the age of thirty following my first stroke, most of my intellect and knowledge were still intact. So, I could find workarounds. Rather than, “No one knows what caused it,” I could just say, “Idiopathic.” Between the ages of 21 and 56 I lost 25 IQ points, going from 165 to 140. I no longer have the reserves to hide the condition. Just like Joe Biden.
My appetite has dropped significantly, Weight loss is linear at two pounds every four weeks. There does not appear to be any return of malignancy (I am five=years post-cancer, my second onset following the first by about a year).
I have COPD, stage three, with recurring minor lung infections. They began just over a year ago at about 5.5 weeks apart. They are now about three weeks apart. Around June 2022 they will be continuous.
In addition to difficulty finding words when speaking, I sometimes find it equally difficult when writing. Fortunately, no one sees that, except when I take three weeks to return an e-mail.
The COPD, Normal Pressure Hydrocephalus balance problems, the hydrocephalus cognitive decline, and Rheumatoid Arthritis are all cyclical, but of differing lengths. They aligned at the bottom of the cycle for the first time about four weeks ago. They should align again at nadir around July 2022.
Need for sleep is out of control, as is my circadian rhythm. Most days I sleep sixteen to twenty hours.
There is no real pain except that associated with a migraine-like disorder. The tremors worsen every day, and the amount of time available for writing drops daily. The tremors are diagnosed as Essential Tremor, and though it resembles Parkinson’s, it isn’t. Sometimes the same drugs are used but dosage is vastly different.
I’m beginning to hallucinate if I stare at a flat surface for more than two or three seconds. Both typed and handwritten letters emerge, and are often accompanied by drawings or images. I cannot lie in bed with my eyes open because I nearly every night I get to watch a feature-length movie playing out on the wall.
How do I feel about this? Death is inevitable, mine is within sight, I’ve planned for lifetime support for my wife and our disabled daughter. All in all, I think I’d rather be alive than dead, but I haven’t experienced anything really bad yet. Being alive lets me write some stories I want to tell.
Things from the past that make me smile.
In Yellowstone National Park, having to come to a complete stop when a very large bear decided he wanted to look through the front window of the VW Bus. Anyone familiar with the vehicle will know immediately that put him about nine inches from my nose. My 14-year-old sister was in the front passenger seat and waved a hot dog at him out the window. Yes, we’re both still alive.
In Mexico, my then 15-year-old sister brushed her teeth using tap water, and Montezuma struck shortly thereafter. We had to stop every thirty minutes for her to use a bathroom, and I accompanied her inside the local bar. I ordered a beer every time, and soon I had to use a bathroom every thirty minutes, not synchronized, of course.
When she was about four, my younger daughter turned to me in the front seat and said, “Not many people have herpes, do they, Daddy?” Time to temporize. “What makes you say that?” I should have anticipated her answer. “We just passed a gray one going in the opposite direction.” A quick glance in the rear-view mirror saw a gray VW Beetle pulling away in the other direction. Herbies, not herpes. Like in the Disney movie.
After we were married, we moved immediately to Berlin to live. Six months later my mother and sister visited, and we borrowed a camper van to take them around Europe. Before we left, I asked our landlady if we could throw our pants in her outhouse. My German did improve later. We did well in Luxembourg and France, until we tried returning to the campground from the Eifel Tower (which was closed). The subway halted, a voice over the loudspeaker announced we should walk to bus number something to continue. I had all of our money and documents, and after I, my mother and sister had boarded the driver closed the door, leaving my 21-year-old new bride on the street without money, passport, or a single word of French. Meanwhile we had picked up two U.S. female teenagers out bumming around Europe.
I asked the driver to open the door and let my mother on. He said no, and cursed at me. The teenagers wanted to know what he was saying, but I replied to the driver that he had to open the door and my language was rather salty. He told me to go fuck myself, and I questioned whether his mother felated more than two dogs at a time. The teenagers kept trying to interrupt. Upshot was that he opened the door unhappily. Well, it’s funny in retrospect.
On the Autroute du Sud we discovered we did not have enough francs to pay the toll, so we stopped at a service plaza to ask if we could use dollars and get francs in change; yes, if we ordered something. Everyone wanted a coke, and my mother saw a sign on the wall reading “We have hot dogs.” Into my ear, straight out of my mouth without disturbing a single brain cell, I ordered four colas and a sexually aroused dog.
We crossed into Switzerland and stayed in Geneva for a few days. Enroute to Italy I followed signs to the Mont Blanc Tunnel, cleared Swiss Customs, then Italian Customs, then turned around a few hundred meters later and recrossed Italian Customs, then Swiss. Rinse and repeat. After the fourth iteration, they just waved us through. Finally, the Italian border folks took pity and gave me directions to the Tunnel.
On the way back, we were low on petrol, and petrol was very expensive in Italy. I wanted to order the minimum possible to get to the Austrian border. I ordered venti-mille lire di benzina; the attendant heard “venti-mille litri di benzina.” I caught him well before he tried putting 20,000 litres of petrol in the van.
Each vignette brings another to mind and creates yet another smile. I’ve lived a rewarding life far better than I deserved.
I laughed out loud, for real. There's nothing like the road.
Thank you for sharing your vignettes. What makes you smile is contagious.