Wednesday, July 31, 2019

The final blogpost

After my diagnosis of early-onset Alzheimer’s, I knew I had to write about my condition. But how? I soon learned that Greg O’Brien, who lives on the Cape, had written a stellar book about early-onset Alzheimer’s. I’ve met Greg only one time, and the encounter was brief. But his book is essential to me. Greg proved that someone with Alzheimer’s can write at a high level.
Why am I ending my blog? Alzheimer’s is a “progressive” disease. There is no going back to an earlier stage. More important, doing my blog has come to be an arduous task. Or worse.
Yes, I can depend on Paula’s skills. But Paula has other work to do. And I am chary to dump another task on her. And some of you may recall the near loss of my electronic manuscript, after I tipped a glass of water on my laptop, putting me in a funk. Paula was magnificent that day. That’s one reason I married her: supreme calm under stress.
And now that I won’t be publishing my blogposts, how will I fill my time? This should be fairly easy. For decades, I carped about not having time to work on my fiction. Now I will have a chance. Certainly, I will have the time. But fiction is a more demanding genre. My last book was a collection of essays, focused on commercial fishing in Puget Sound and Southeastern Alaska.
There was a time that my fiction writing was the center of my universe. Here is an example. In 1989, I was preparing for my “comps”—short for comprehensive master’s exam—at Northeastern University. While other students had diligent plans to ensure they pass, I flippantly roared through the test. Why the rush? Elementary, dear Watson. I hoped to get back to Somerville, so I could write a page or two of my novel when I got home.
This time around, things are different. I recall a Northeastern classmate suggesting that I was faintly obsessed with my book, and he was probably right. O, creative youth, make your imprint before life hardens into obsidian.

Thursday, July 25, 2019

Middle stage

What does the middle stage of Alzheimer’s feel like? Let me be your guide. This past week was a hard one. It started with high hopes. For the fourth time, I was looking forward to participating in the End to Ride Alzheimer’s. By now my friend and riding partner, Matthew Abbate, were embarking for the fourth year in a row. I had reason to expect that things would similar. Each year was different.
Our first year, I was asked to make a short speech on the eve of the Ride. I spoke about my early love for cycling, and cycling through a dangerous May storm in 1979 in the Cascades. But this year, my fourth Ride, was a first. What happened? I am still figuring it out. It appears that there was an important gap in certain spaces, like in the Nixon tapes. The same process was going on in my brain. The ocean was on my left. As long as I still could see the shore, things were normal. What I was looking for was the entrance to the woods. In other years, I felt tranquil. But this day, I was agitated.
In other years, I looked forward to the food stations. We were probably within fifteen minutes of the first food station. But we were too slow. I had to pull over into a parking lot, feeling dizzy.
What else has changed?  This is a big one. Month to month, I have to be careful when I walk around Somerville. This first came to the fore in a big way in spring 2017. At that point, I was still firmly in the early stage of the disease. Overnight, I realized that I must be much more careful in public alone. Back when the Red Sox won the World Series in 2013, I was confident to go to the celebration parade alone. But in the very recent World Series (2018), I concluded that I would be a fool to plunge into the crowds. Another distinction is the decline in small-motor skills. The first time, in 2016, I had no problem pinning my ID. But in recent years, I had to ask for help.

Recently, I was one of four panelists high up in one of Boston’s highest buildings. With scudding clouds passing by, the topic was dementia. Each panelist had some form of dementia. A decade ago, dementia was not much discussed. I’m sure that talking and learning is at an all-time high. To me, this was quite novel. I have been on several panels. But having four panelists with dementia was a wonder and a joy.
And what about the “fog”? That was the topic of a recent book, from a novice writer. For me, fog is not a major concern, at least for now. What did strike me was a visit to my Mom’s care facility north of Seattle in 2013. At that time, I was already showing signs of cognitive decline and worse. Then I saw a man, quite demented.
 He seemed out of Greek mythology. He was half-naked. I could infer that he was quite demented. Later, I could infer that the man was at the final destination. Thus did my first lesson in dementia studies conclude. I pitied him. He must have been very dizzy. But at the time, he also disturbed me.
And these days, I have to be careful when I walk alone. That is my biggest vulnerability these days. So, I make a point to walk only on familiar routes.

Tuesday, July 16, 2019

Winding Down

 When I got my diagnosis in June 2015, the only thing I knew about Alzheimer’s was that there was no cure. But I was eager to learn. Vaguely, I began to learn about the disease. One painful error was the relationship between Alzheimer’s and CTE (chronic traumatic encephalopathy).
There were distinct pathologies. At that time, I was in touch with Steve DeWitt, a former high school football player. Both Steve and I played high school football in Bellingham, Washington. For a year or so we both thought we had head trauma caused by football. But we were playing in the wrong arena. Somehow, we both conflated Alzheimer’s with CTE, a much more fearsome adversity. So, stumbling as we walked, we began to understand the real opponent: Early-onset Alzheimer’s. Then something sad occurred. Steve began to slow down. This process, of course, was irreversible.
And now, I am slowing down. And Steve is having a very hard time.  My goal is to get my book about Alzheimer’s in print sometime in 2020. But this is not a race.  And without my wife, Paula, there would no book at all. Her copy-editing and proofreading: those skills used be mine as well.
What can I do to help? Channeling the Hippocratic oath, do no harm. In the early years of the blog, I didn’t need a lot of help, other than Paula’s proofreading. But during the last two months, things seem to be cratering. The Evich men—my late father, my brother, and I—have dealt with anxiety.
Now, I am confronting the “fog.” This is fairly common with Alzheimer’s. Recently I reviewed a book largely on this phenomenon. Several years ago, I was visiting my mom at her assisted-care facility. It was the first time that I saw someone with obvious dementia.
He seemed to float in the room, like something from Greek myth. Did he stuff cotton in his ears? His journey was almost done. But we mortals must cherish our time. Turn off your phones, and tend to your souls.