Under Wraps

When I finally went to a dermatologist at the insistence of friends, he took one look at the dark spot atop my abdomen from across the room and told me to return at 5:30 that winter evening.

Coming from a man a few years older than I and a few inches taller in a flowing white coat, the steely look and unhesitating command preempted any objection I might have made regarding plans for supper or night-time entertainment.

“Ah, yes. I’ll, I’ll be here.”

My alarm went unremarked, as he entered a notation on a clipboard while I buttoned up. Nor did he say anything, not even goodbye, as I walked out the door behind him.

A few hours later, he barely said hello as I walked toward the receptionist’s desk. She wasn’t there, nor was any nurse or any other patient. The doctor opened the door to the back rooms and motioned me into one of them. He did tell me to get up on the table and remove my shirt, although I was already doing both.

During the procedure, I don’t recall any words from him other than “This will sting a bit” and “Lean back.” As he applied the bandage, he said that he was sending the tissue to a lab in Cambridge, and that I’d hear from him in about five days.

“Should I do anything in the meantime.”

“Nothing you can do.”

Again, he said nothing more as I put the shirt back on and left. Trying to lighten my own mood, I chirped, “Well, talk to you soon,” as if we were drinking buddies with plans to watch football the coming weekend.

He voiced a flat “Good bye” as I left, his eyes fixed on his clipboard.

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Medical verdicts are usually definite, pronounced in a single word. It is one of the great ironies of medicine, of language, of modern life such as it is, that we crave Negative and dread Positive.

As an English teacher who got mileage out of that grim joke 25 years ago, I did not laugh when the receptionist said “positive” over the phone. Good thing I didn’t faint and instead kept listening, as she quickly added, “but they think Dr. Swanson got it all. He wants you to come in soon for a second sample.”

“As soon as he wants.”

A few days later, taking the appointment of another patient’s cancellation, I was under his knife again. I joked about living on borrowed time and hoping that I was as “negative” as my employers thought. When he looked puzzled, I explained that I was on the faculty of a local college and had started asking aloud in department meetings whether we were supposed to be college teachers or nursing home attendants. He seemed to grimace.

“They call themselves ‘deans,’ but they’re really accountants,” I concluded, and I think I detected more of a grin. But there’s a chance I may have just imagined it in my giddiness. With the same no-nonsense focus and precision, he soon carved his sample, put it in a jar, and applied a bandage.

As I buttoned, I told him that if he was willing, I’d return each week for a cut, and we could call it a weight loss program. Unsmiling, he said merely, “No thanks.”

“But many thanks to you, Dr. Swanson!” The words were effortlessly sincere as I went out the door.

This time he said, “Good luck,” but with no emotion or smile, as he once again stared at his clipboard.

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After the second verdict proved negative, I set up bi-annual checkups that soon became annual. None of them were eventful, just a few small cuts that did not require a Cambridge lab exam.

In January 2007, I quit smoking, and by April I had gained 35 pounds. When I saw Dr. Swanson in June, I told him he should increase his fee since there was so much more of me for him to look at.

Might as well have told him that I prefer boxers to briefs. “Doesn’t matter,” he said as if saying “ho hum,” and he continued to squint through his eyeglass within an inch of my neck.

And so it went. I figured that he was like a possessed musician or high-strung athlete, so focused on the task at hand that nothing else registers, and so I thought nothing of it. Until the morning that a small item in that day’s Boston Globe caught my eye, a notice of magazine article by a dermatologist claiming that Franklin Delano Roosevelt died of melanoma. Since FDR had many ailments, mostly associated with childhood polio, this was kept secret, even after his death. Hard to think of this now, but cancer, right into the 1960s, was considered shameful, somehow indicative of bad character.

Though the stigma is long gone, this revelation of FDR’s melanoma came as a surprise. I happened to be driving past Anna Jacques Hospital later that day, and brought the paper to Dr. Swanson’s office, figuring that I’d leave it with the receptionist. Behind her and past a nurse perusing a screen at another desk, the doctor was standing perfectly still, his hands up in front of him, holding nothing, as he appeared to be examining a plant hanging from the back wall.

Ah, the plants! All over and around that room and its three desks, they had to be, or so I thought, an attempt by the receptionist or a nurse to cheer the cheerless doctor up.

“Hello, Dr. Swanson!” I called out, but he did not move.

“Can I help you?” the receptionist called up, clearly intending to intercept whatever I had to say. I handed her the paper, pointed to the two paragraphs, and told her I thought the doctor would want to see it.

Not sure exactly why, but I think the words “written by a dermatologist” caught him. Whatever the case, he broke from his trance, walked over, snatched the Globe right out of the receptionist’s hand, and stared at it. And stared at it. Since it was so short, I awaited a “Wow!” or a “Thanks!” maybe an “I already know this” or an “I don’t believe it.” But no such declaration was forthcoming, as he continued to stare at the text.

I glanced down at the receptionist who motioned with her eyes for me to leave.

“Well, I gotta go. You can keep that!”

She nodded her head with a slight smile. He continued to stare at the paper.

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Only once did I see him outside of his office. Wish I could recall the name of the film, but he arrived at the Screening Room one night when I was selling tickets before climbing into the projectionist’s booth to run the show. With him was a woman I presumed to be his wife who handed me a $20 bill before I handed her the change–yes, it was that long ago–and looked up at them for the first time.

Immediately struck me that his hair appeared brushed more evenly to the side rather than just matted back over his balding spot as I always saw it. He looked five or ten years younger, which I attributed to her.

“Well! Hello, Dr. Swanson!”

“Oh! Hello.”

So he did recognize me, but you’d have never known it from the lack of expression on his face or the flatness of “hello” after the initial surprise. His companion gave me a wide smile and a cheery “Thank You!” as they turned and went into the theater. Both smile and cheer seemed incongruous at the time. In retrospect, they seem knowing.

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Four years ago, Dr. Charles Swanson succumbed to a three-year battle with cancer, during which he continued treating patients, including me just four months before he passed. His obituary dispelled my assumptions. No marriage or children were mentioned, but he had a lifelong passion for botany and gardening. So those plants were his! As is the custom of obituaries, the one in the local paper did not mention the cause of death, nor did it mention any medical condition, recent or lifelong.

Conversations, however, among his many patients, seemingly the entire population of Newburyport, all included the word “quirky,” and some included a word that would never have occurred to me. Eventually, due to his regional reputation as a diagnostician, the Boston Globe ran a more comprehensive obit confirming that diagnosis of him.

The man who saved my life was autistic.

All of this comes back to me after reading NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, a controversial best-seller in 2015 that serves not just as a history of autism, but as yet another history of the intersections of politics and science around the world.

If you never heard of the eugenics movement in the USA a century ago, with no less an advocate than Pres. Woodrow Wilson, the opening chapters are a concise history of it. And if you think you already know enough about the subject of racial history kept out of our schools, you need to know that eugenics became an American export that propelled the Nazis–and that it lingers with today’s neo-Nazis now in the base of authoritarian movements on both continents.

But that was not the controversy in 2015. It was–and still is–over author Steve Silberman’s premise that autism is “a lifelong disability that deserves support, rather than… a disease of children that can be cured.” Much of the medical profession–not to mention the pharmaceutical industry–is heavily invested in cures. With support, however, autistic men and women have excelled in careers that require a focus and concentration beyond what we “neurotypical” folks have. From the monks who copied and decorated manuscripts before Gutenberg to the scientists in the race for space and Silicon Valley’s designers of cyberspace, their contributions to the arts and sciences are well-documented in NeuroTribes.

In that context, not only did Dr. Swanson cease to be a puzzle, but odd bits and pieces of my own life seemed to fall into place. Not that I–or my father, or a former employer, or a few professors, or a handful of close friends over the years–would ever qualify for the diagnosis, but autism is an umbrella term for a variety of quirks, odd habits, and mannerisms. In some cases, it’s debilitating, in others just another way of doing things. Hence, the word “spectrum.”

Stands to reason then, that anyone without the diagnosis may have a touch of it. As Silberman illustrates more than once, this applies to anyone told as child by other children that he or she is “just trying to be different” or “thinks you’re better than everyone else” because he or she doesn’t want to join them–or to any adult occasionally called “eccentric” for any behavioral reason.

To read NeuroTribes with such memories intact is to play a pinball machine that lights up with ah-ha! moments, making it a page-turner despite all the scientific lingo.

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If I had to pick a single line to represent the book, it wouldn’t be from it, but from an essay Silberman wrote for Vox four years later about a Swedish teenager and environmental activist:

The line that follows measures the worth of NeuroTribe‘s relevance to current events:

Great minds, in other words, don’t always think alike. It’s not surprising that people who feel an intuitive love for nature and an instinctive disdain for dishonesty are now taking leadership positions in the global fight against climate change.

If just one autistic person could save me from my own negligence, imagine what the whole much-larger-than-anyone-thinks Tribe might do.

-30-

For Silberman’s essay on Greta Thunberg:

https://www.vox.com/first-person/2019/5/6/18531551/greta-thunberg-autism-aspergers

Postscript for film & literature buffs:

NeuroTribes has a chapter on Rain Man that reads like the recent book, Shooting Midnight Cowboy, regarding how Dustin Hoffman created the role and shaped the film. Rain Man when it appeared in 1988 was a huge breakthrough for autistic people and their families, although the battles–between support and “cure,” between tolerance for diversity and a push for conformity–continue to this day. For all that, I must confess that my only reaction to that film was to pull my copy of “Bartleby the Scrivener” out of a box and refresh myself with details I had just seen on screen–the rocking motion, the lack of eye contact, the expressionless stare, the flat voice. Herman Melville had heard and written of an autistic man some 80 years before Dr. Hans Asperger first diagnosed the condition in his Vienna clinic. Two years ago, before I saw Dr. Swanson’s obit or read Silberman’s book, most everyone on my Christmas gift list received a t-shirt with Bartleby’s signature line: “I would prefer not to.” I thought it a nice joke at the time. Only now do I realize the undeniable touch of truth to it.

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