'The writing makes me whole again'

As I noted in a recent post [A kitchen accident, November 13], I discovered that my short-term memory is even less reliable than I had assumed. The accident, which ended up destroying a large Pyrex lid, was recalled by Paula and me in very different ways. In my version, it was Paula who discovered the red-hot burner, turned it off, and poked the Pyrex top with a dinner knife, causing the top to disintegrate. But Paula was not even in the room at that time. She had helped out with the peeling and cutting of a small pumpkin, the central ingredient in our dinner, then left the room to attend to other matters. The glass lid had shattered in the kitchen sink when I apparently immersed it in cold water.

When Paula proofread the blog post a couple days later, her reaction to my memory of events was halfway between amusement and horror. The most charitable interpretation is that a prosecuting attorney might want to think twice about calling me to testify–unless his intent was to mislead the defense.

One of the odd things about Alzheimer’s is that someone can have a piss-poor short-term memory and still write as well as ever, though at a slower pace. This is less surprising in my case, since I’m still at an early stage of the disease. But the book I recently read by Greg O'Brien, On Pluto: Inside the Mind of Alzheimer’s, is a revelation and an inspiration.

The revelation is that as this illness follows its meandering path, some people are able to tap into what is called “cognitive reserve” – the ability to maintain core professional and vocational competencies. In O’Brien’s case–and in mine–that core competency is writing.

This can be true deep into the middle stage of the disease when certain everyday activities become challenges, if not adventures.

O’Brien describes an unsettling trip through an automated car wash and, in the same afternoon, his decision to use his lawn tractor in the Cape Cod town of Brewster not only to mow his own land but also the properties of his neighbors.

The confusion didn’t end there.

“As I headed down the steep hill on Stony Hill Road, whizzing by, often at close to 50 mph, something in the deep recesses of my brain told me this was a bad idea, a very bad idea,” O’Brien writes. “My attention was then drawn to a neighbor’s lawn through the back woods behind our house where a delicate man in his 70s was placidly cutting with a push mower. The old way. Without rational thought, I took a hard right into the scrub pines, blades aglow, cutting through the underbrush—saplings of oaks, pines and a few maple trees. The piercing grinding echoed throughout the neighborhood. Sounded like screams of mercy. My neighbors must have thought I was Freddy Krueger from Elm Street. I never made eye contact with my elder neighbor, just trimmed his lawn in perfect parallel lines, then sharply hung a left back through the woods, the grinding of the underbrush again intense. The poor man fled into his house, probably scared shitless.”

I quoted this lengthy passage for two reasons. The first is that it’s an example of vibrant prose. Everything is vividly specific—the types of sapling trees, “the piercing grinding” of the mower, the old man fleeing to the shelter of his house.

The second reason is that it demonstrates how Alzheimer’s, over the years, corrodes judgment, sometimes in bizarre ways. Elsewhere in his book, O’Brien describes episodes of mistaking a stranger for a friend, and his wife for a stranger. “I knew I was supposed to be in the bed with this attractive woman,” he writes, “but I wasn’t sure who she was. She looked familiar, but I had no understanding for several minutes of the relationship with the woman I have slept with for 37 years.”

This is evidence that, despite experiencing hallucinations and bouts of confusion, it is possible to write well deep into the middle stages of this disease. As O’Brien observes, “The writing makes me whole again—until the confusion takes over.”

The explanation for this disconnect—lucid prose on the one hand, dementia on the other–can be described as a kind of mental bank account, or tank of gas, that allows some people to continue to function at a high level in certain realms, even when short-term memory and executive functions are deeply compromised.

What a strange, vaguely comic disease I have.

Parallel lives

Soon after I announced on Facebook this past summer that I’d been diagnosed with early-onset Alzheimer’s, I heard from Steve DeWitt, who, in the late 1970s, was one year ahead of me at Sehome High School in Bellingham, Washington. Steve, it turned out, also was ahead of me in being diagnosed with this disease. Each of us played on our football team.

Prior to his diagnosis, Steve worked on high-end home projects, almost all of them in San Francisco. One of the homes was featured in a prestigious architecture magazine. But the severe recession that began in the fall of 2008 had a serious effect on his livelihood. “I was, for a year, unemployed…. It was just me and my wife, puttering around, doing odd jobs around the house.”

Soon the news got much worse. Steve linked up with an electrician he’d worked with previously. “The guy called me in, and hired me, and said I could start tomorrow,” Steve recalled. “It seemed like a great thing. But a few days later, the guy said, ‘You’re not cutting it.’”

Like many of us at a very early stage in the disease, Steve was not ready to acknowledge that the problem was his. He continued to bid for contracting jobs.

“I still had all the confidence in the world then. I just figured that I would just stop drinking wine, and eat better, and everything would come around fine.”

Steve added, “I was stubborn then. I kept on thinking that it was everyone else’s problem, not mine.

“I knew what I had done in the past. I had been on the cover of Architectural Digest. Those weren’t just dingbat ranchers I was building.”

During our conversation, Steve and I swapped stories of the fear we faced being sophomores on our high school football team and having to scrimmage against the varsity. Many of the seniors were grown men. Steve recalled getting hit helmet-to-helmet by Lance Neubauer, a huge specimen of a man who looked like a living version of Michaelangelo’s statue David, but with larger thighs.

“He was on offense, and I was on defense—I was skinny then—and if I could have, I would have just got out of his way,” Steve said. “We hit helmet to helmet on the top. It was–wow—the hardest hit I ever felt. I remember we had the green helmets at that time, and it was like I was wearing green sunglasses.”

Our coach was something of a free spirit, a far cry from the stereotype of the overbearing football taskmaster. His creative game tactics sometimes backfired, in one case leading to a loss to our crosstown rivals by a single point. But in terms of the treatment of concussions, our coach was like most, maybe all, high school football coaches of that era. After the blow from Neubauer, Steve remembers the coach telling him, “Just walk it off.”

Neither Steve nor I are aware of any instances of early-onset Alzheimer’s in our extended families. Both of us believe that our cognitive difficulties are at least partly a consequence of playing football. Steve has been examined by two neurologists, but neither is confident that the hit by Neubauer led decades later to Alzheimer’s. (One doctor was skeptical. The other ruled it out entirely.) Another factor in Steve’s health is a work-related concussion in 1988.

Because of a seizure some years back, believed to be connected to Alzheimer’s, Steve no longer drives. Living about 25 miles west of San Francisco, he feels isolated at times. But he is active in his local Alzheimer’s support group, and he is also enrolled in a clinical trial about ten miles from his home. At fifty-four, he is the youngest person in the study. The others are in their sixties and seventies.

But there is an encouraging sign: The trial medication appears to be helping.

“I do feel a lot better now than when I was diagnosed,” Steve said. “I was really confused all the time.”

I also asked Steve a question about surviving into the terminal stage of dementia, by which time our faculties may be severely compromised.

 “Yeah, there is an 800-pound gorilla around the corner,” Steve said. “My deal is, I just don’t look too far down the road. I know it’s out there. This is kind of a cliché, but I just try to enjoy the day. I do organic gardening. I try to keep busy.”

A kitchen accident

For much of this past Saturday, I was feeling exceedingly good about myself. My wife Paula and I spent the morning at the Bat Mitzvah of a neighbor of ours, a thirteen-year-old who showed considerable poise during the lengthy service. Afterwards, the girl’s grandmother, an author of novels for young readers, complimented my blog, as did our representative on Somerville’s Board of Aldermen. Late that afternoon, I rode my bike at a brisk pace to Lexington, a 15-mile round trip. As dusk was settling in, I turned back toward Somerville. I’d had the foresight to bring along my detachable headlight, along with a day-glow vest. Since Lexington is at a higher elevation than Somerville, most of the ride home was downhill. Other riders were scarce, and I appreciated the darkening solitude. I could feel myself breathing, the essential act of life, and I was experiencing the bike rider’s equivalent of runner’s high. I felt like an athlete in his prime. In this exalted mood, it was possible to fantasize that my diagnosis of Alzheimer’s was a mistake.

Once I returned home, I took a hot shower, dressed, and began to prepare our dinner, a pumpkin melange that Paula and I have been making every autumn since the late nineties. It is not particularly challenging. Peeling the pumpkin is a pain, but things were moving along. A few minutes later, I realized that neither of us had remembered to saute the red onion, and that the dish would not be as satisfying as usual. Either the onions would be too harsh, or the apple sections would disintegrate in the heat.

 I was mildly agitated. I enjoy cooking, and I like to do it well. One of the first things I did after I was diagnosed was to label the dials for each of the four burners on our stovetop—front left, back left, etcetera—rather  than relying only on the configuration of red dots. But in this case, instead of turning on the large left front burner, I turned on the small left back burner. This would not have been of consequence if the burner had nothing on it at that time. I would have noticed the glowing ring. But I’d laid the large Pyrex top of our Dutch oven over it. The result was predictable. When I touched it with a knife, the glass top disintegrated. So did my composure.

Is there any more stereotypical image of Alzheimer’s as someone leaving a burner on?

Paula, among the calmest human beings I have known, said almost nothing about the incident. But she did mention that, two months earlier, when I was about to leave for Logan Airport, en route to Germany, I left that same back burner on, though at the lowest setting.

Recalling these recent incidents made me think of the day of Christmas Eve in 2013, when, though I didn’t yet know it, I was experiencing symptoms of Alzheimer’s.

The previous day I had intended to sign off on a project I was managing, the program book for my organization’s annual conference. But, as often happens when a publication is close to going to press, there were new edits to make, and I arranged with the design firm I was working with to facilitate this. Christmas was on a Wednesday that year, and my office was closed on the day of Christmas Eve, but the design firm intended to stay open until 1 p.m. I finished up my Christmas shopping first thing in the morning, and I was back at my house by mid-morning.

Every Christmas Eve I make a ginger-carrot soup, which includes white wine. Drinking a glass of wine alone almost always makes me contemplative, and I remember admiring the georgeous purple hues of the afternoon’s winter sunset.

Then, alas, I remembered. I immediately called the design firm, but, as I already knew, the office had closed. No one answered. I felt ill with worry. It seemed conceivable that the delay in sending the electronic files to the printer could lead to the program books not being ready in time for our convention.

The day after Christmas, I did get in touch with my main contact at the firm, and I learned that we had more time to sign off on the project than I’d realized.

This phone conversation took place while I was visiting the American Textile History Museum in Lowell with my son, who was home from college. I was, of course, relieved. But I did not enjoy my visit to the birthplace of the American industrial revolution, despite experiencing the sound and fury of a full-scale nineteenth-century textile factory, where children worked with cotton in their ears. It is still a place I associate with Alzheimer’s.

After I sent this blogpost for Paula to proofread, she noted that my recollection of the kitchen accident was inconsistent with hers. She was not in the kitchen when the accident occurred. I will have more to say about unreliable memory after I finish Greg O’Brien’s memoir, On Pluto: Inside the Mind of Alzheimer’s.

Durable technologies

When I worked on my college newspaper in the early eighties, some of us typed our articles on rolls of brown paper, otherwise used for the drying of hands. One reporter, of limited stature, typed stories as long as he was. Though I owned an electric typewriter, in the newsroom, like everyone else, I pounded out my stories on battleship-gray manual Royal typewriters, well-known for their durability. Columnist Herb Caen, a fixture at the San Francisco Chronicle for almost sixty years, is said to have used the same Royal for his entire career. In our newsroom, a friend who also played on the football team amazed our colleagues by carrying one of the tank-like Royals across the room in one hand.

When I graduated, my mom bought me a Pentax K2000 camera, which, like the Royal typewriter, had a reputation for durability. As a young reporter on a newspaper in Connecticut, I was required to take my own photos. I also learned that it was possible to drop my K2000 and not seriously damage it.

One thing I appreciate about that camera is that I more or less understand how it works. The camera lets in the appropriate amount of light to enable the creation of a durable image on specially treated film.

Somewhere in my attic is a large black-and-white print of me when I was ten years old, decked out in my Little League uniform and catcher’s gear: face mask, chest protector, shin guards. In the photo I’m preparing to catch a simulated pop fly. But anyone with  knowledge of baseball would notice that something is askew: The photo implies that I’m wearing a catcher’s mitt on my right hand. All catchers, even in Little League, are right-handed, and wear their mitt on their left hand.

This photo was not professionally developed. Friends of my brother, who was fourteen, set up a darkroom in their house. The kids who developed the photo did it backwards.

My Pentax camera was fairly easy to use, but nowhere near as simple as today’s digital cameras and smartphones. The film cassette fitted over a vertical spindle on the left side of the camera, and the roll of film began with a tapered leader that ensured that the film would advance. Film did not advance automatically. You had to push with your thumb a lever on the right of the camera. It was important to pay attention to the light meter. If the needle rose significantly above the midpoint of my gauge, the pictures would look washed out; if the needle was too low, the photos would come out dark. Auto focus was not an option. A separate dial on the camera’s detachable lens was used to bring the image into focus. For taking photos indoors, it was necessary to slide in the flash unit above the camera.

The camera, now thirty-one years old, still works, though the flash unit died many years ago from acid leaching out of a dead battery.

Today, of course, digital technology is everywhere – in the music we listen to, in most of the movies we see, and, of course, in the zillions of photos on Facebook.

 Which raises a question: Does the glut of digital information make us more informed? Or less so? Could we perhaps have a few less cat photos and videos?

Disclosure: I posted photos of one of my cats earlier this week. He was roaring after waking and discovering that there was multicolored yarn on his head. Sometimes I give in to the spirit of our age.