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Alaska artist's graphic novel about Parkinson's disease part of innovative series of medical texts

  • Author: Mike Dunham
  • Updated: May 31, 2016
  • Published December 10, 2015

Peter Dunlap-Shohl drew editorial cartoons for the Anchorage Daily News for 25 years. He was diagnosed with Parkinson's disease in 2002 and left the paper a few years later.

What happened next is explained in his new graphic novel, "My Degeneration: A Journey through Parkinson's," 96 color pages of rapid narrative that weaves personal incidents, medical facts, waiting-room lore, compelling analogies and a solid story arc.

"My Degeneration" is published under the Graphic Medicine imprint from Pennsylvania State University Press. The recently initiated series aims to present complex and often sensitive matters of health through the medium most of us call comics.

Though graphic novels have previously addressed tough issues like cancer or end-of-life care, the Graphic Medicine project appears to be the first time anyone has tried to focus on medicine in a series that uses the popular words-and-pictures format. As such, it presents a marked departure from standard medical literature, which can be impenetrable to the general reader -- or patient.

"It was a very bold thing for them to do," said Dunlap-Shohl.

A field on fire

"The idea got started with a small group of academics," said Kendra Boileau, editor in chief of Penn State Press. "Humanities scholars, medical practitioners and artists. Professionals who had been working in the area of comics and medicine for some years."

As an academic publisher, Penn State Press initially saw itself producing scholarly work about the subject of comics and medicine, basically erudite criticism of books in the genre that were already on the market. "But as it turned out, we wound up publishing the books ourselves," Boileau said.

The study of how medicine and comics can connect has been gaining lately, along with rising academic legitimacy for comic studies in general. There is now an annual conference on the topic.

"My Degeneration" was released in October, the third book in the series and the first to deal with a specific disease. Two more titles have since come out and many more are under consideration.

"People who create these comics are coming out fast and furiously," Boileau said. "And they tend to be serious about it. The whole field is gaining awareness. It's on fire."

Upon being diagnosed, Dunlap-Shohl threw himself into researching the disease and created a blog in which he shared information with other patients, writing about and, using computer technology, illustrating his own experiences. He followed and sometimes posted on the website of Ian Williams, M.D., whose own graphic novel, "The Bad Doctor," was the second book published by Graphic Medicine.

It was on that site that Dunlap-Shohl learned about the Penn State project. "People were pushing me to do a book," he said. "But there's already a lot about Parkinson's out there. I had to ask myself: What can I do that's different?"

The answer came from a friend who suggested that his combination of writing and drawing talent could make Parkinson's "an adventure."

Portraying a poltergeist

In the course of a 90-minute read, one learns much about Parkinson's, facts that astound the curious, whether or not they've ever known anyone with the disease -- facts few of us have ever heard of or thought about.

Parkinson's patients can lose their sense of smell years before any physical symptoms materialize. They stop showing emotion in their faces, even though they feel the same feelings as always. Between the disease and drugs used to treat it, those feelings can be a wild ride of depression, negativity, wordiness, apathy, introspection and maudlin eruptions. The term is "emotional incontinence," one of several bits of technical jargon described in a chapter titled "How to Speak Parkinson's."

"I hit on the idea of language as a way to give an idea of how complicated the disease is," he said. "So complicated that it has its own vocabulary."

Parkinson's patients can have hallucinations and move, while dreaming, with full muscle control.

"It's a heck of a lot more than just a motor disease," Dunlap-Shohl said. Though the symptoms familiar to most outsiders involve uncontrollable shaking or wild gestures, alternating with an inability to move at all, the mind is what is controlling things -- and it can be manipulated.

For example, in one episode in the book, Dunlap-Shohl finds himself paralyzed at an airport. Although he can't walk forward, he can still walk backward. With his son and wife Pamela Dunlap-Shohl (a designer and graphic artist at the Alaska Dispatch News) clearing the way, he traverses the airport in reverse. This leads to a page showing techniques Parkinson's patients use to keep moving when moving doesn't want to come naturally. A pigeon-toed step or skip sometimes overcomes the inertia.

"Parkinson's is like a poltergeist," Dunlap-Shohl said. "It's almost like it has its own will, its own sense of whimsy. It's fascinating."

But also grim. Dunlap-Shohl writes that he could only think of three words after receiving his diagnosis, "Progressive, disabling, incurable."

"My Degeneration" doesn't pull punches, verbally or pictorially. Depictions of demons, ogres, monsters and debilitation abound. There's nothing about having Parkinson's that could be described as pleasant or jolly.

And yet the book presents much of the trauma in the garb of absurd humor. Dunlap-Shohl devotes several panels to recounting how nervous or insensitive doctors broke bad news to patients. Some of their manners were so crude that they seem drawn from the sad, wicked comedy of Vonnegut or Balzac. For example: "You will be dead before your body gets used to it." One patient was put in a cell because medical personnel suspected illegal drug use.

In that case, Dunlap-Shohl said, the doctors were perplexed by the fact that the patient was very young. Parkinson's is often seen as an old person's disease and a rare one at that. Dunlap-Shohl was on the young side, 43 when he was diagnosed -- and, he notes, with millions of baby boomers getting older by the hour, perceptions and numbers may change dramatically in the near future.

Facing the unimaginable

On one level, "My Degeneration" is an information pamphlet about a specific disease, with easy-to-absorb data accompanied by memorable illustrations.

It becomes literature when it describes the transformation of the protagonist, the author. On that level, Dunlap-Shohl has written a book about how anyone copes with the unexpected, exploring themes that touch those who don't know anyone with Parkinson's and never will. In this way, he presents a universal story -- the adventure, if you will, of a book more like "The Odyssey" or "The Adventures of Huckleberry Finn" than the American Psychiatric Association's "Diagnostic and Statistical Manual of Mental Disorders."

"I wasn't ready for Parkinson's," Dunlap-Shohl said. "Who would be? You can't prepare for the unimaginable."

And yet the unimaginable happens every day to all sorts of people in all sorts of ways. Dunlap-Shohl presents a scene on a bike trail where everyone, it turns out, has some doom or other looming over them. We're all in the same boat, he seems to say. Each of us has something inside that's going to get us sooner or later, assuming we avoid accidents. Parkinson's people just happen to have a better idea than most when sooner or later is going to be and how it's going to go down.

That knowledge may not be a blessing. At the start of his story, Dunlap-Shohl is taking a run in bear country, wanting to encounter a hungry grizzly that will put him out of his misery.

The bears are somewhere else that day, but gloom is a recurring topic for the author. When he was first tested for early symptoms, "I was kind of hoping it would be a brain tumor," he said. "Because that would be fast."

The author elevates the particular to the universal through the repeated use of verbal and visual metaphors. These range from "Moby Dick" to "The Big Lebowski." In one scene he slugs it out in a boxing ring, fighting the disease depicted in human form.

"That one's sort of a failed metaphor," he said. "I mean, 'Fighting the disease.' The fight is rigged. The disease will always win. It's undefeated."

He prefers the metaphor of a tightrope walker, also in the book, who only succeeds with the support of a team and the will to keep moving ahead.

The journey of the title also suggests an evolving shift in perspective, the change in attitude that separates literature from mere reporting. In the course of trials, Dunlap-Shohl sheds the misanthropy built up by years of work at a newspaper. (Skepticism is an occupational requirement of journalism; cynicism is its occupational disease.)

Dunlap-Shohl described the book as "a collaboration between me and the disease," particularly with regard to the art. "It was a compromise between what I wanted to do," carefully executed lines of ink, "and what it wanted to do," wild, uncontrolled sweeps of the arm. "The result was a free look, but an acceptable look."

Nonetheless, the disease compromised the minute hand-eye coordination that is second nature to born artists. "I was limited in ways I hadn't been before," he said. "But it's limits that encourage creativity, I think."

Three rules

Being diagnosed with a life-altering medical condition may be the ultimate challenge -- or stimulus -- to creativity, at least in the largely war-free, hunger-free life of modern America. And its advent cannot be anticipated or refused.

But how we react to the unpredictable involves choice, analysis and willingness to act. Deciding not to commit suicide by bear, for instance. In naked detail, Dunlap-Shohl shows how he reached the decision to keep moving ahead, though the decision itself was perhaps foreordained. "I'm stuck with having to figure out how to live with P.D.," his character states in a thought bubble.

What he figures out can be boiled down to three rules that can apply to threatening situations in general: Get information and learn everything you can. Accept and seek out the help of others. Adjust how you think to make the best of the situation.

"The brain is incredibly plastic," he said. "It can learn new things. It can change."

Dunlap-Shohl admits that he hates to change. He also hates to run, but he does both to accommodate and counter the effects of the disease.

He hopes that the book will get into the hands of other Parkinson's patients, especially those who have been recently diagnosed and are reeling from the news.

"I want people to say it's not going to be horrible. The breakthroughs that have happened in my lifetime are amazing. You can manage it fairly well. I'm doing it OK. It's more than 10 years since my diagnosis and here I'm writing a book. That's a good message all by itself.

"I'm glad I wasn't eaten by the bear."

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