Writing about Mental Health, One Thing Stolen, and New Hope for Frontotemporal Dementia

Monday, March 30, 2015

Tomorrow evening I'll be down at Penn, at Kelly Writers House, participating in a 7-Up program that promises to be provocative. The theme is mental health and literature. The evening, a Junior Fellows Program, was knit together (so ably) by Hannah White. You can find more about the evening below, and of course you are welcome to come.

In trying to develop a presentation that fits within the given seven minute boundaries, I'm aware of all that I won't have time to say about the medical research and stories that have been released in the months after I finished writing One Thing Stolen, a novel that has a rare neurodegenerative condition—frontotemporal dementia, primary progressive aphasia—at its heart.

(Generally speaking, FTD is a category of conditions brought on by the "progressive degeneration of the temporal and frontal lobes of the brain." Some patients afflicted with the "language subtypes" of FTD erupt with new artistic capabilities—a sign, it is thought, of a brain attempting to compensate for those parts of the brain that are no longer working as they once were.)

I would like, then, to summarize four key stories here—stories that validate the hope that readers will find in the final pages of Nadia's story.

In writing One Thing Stolen, I grounded my hope in the work of (and email conversations with) Bruce Miller, MD, who directs the UCSF Memory and Aging Center and whose work on FTD "emphasizes both the behavioral and emotional deficits that characterize these patients, while simultaneously noting the visual creativity that can emerge in the setting of FTD."

But in my novel, Penn doctors are at work as well, and just days ago, on March 20, Penn Medicine researchers announced, and here I'm quoting from the press release, the discovery that " hypermethylation - the epigenetic ability to turn down or turn off a bad gene implicated in 10 to 30 percent of patients with Amyotrophic Lateral Sclerosis (ALS) and Frontotemporal Degeneration (FTD) - serves as a protective barrier inhibiting the development of these diseases. Their work, published this month in Neurology, may suggest a neuroprotective target for drug discovery efforts."

Later on in the release, this quote from Corey McMillan, PhD, research assistant professor of Neurology in the Frontotemporal Degeneration Center in the Perelman School of Medicine at the University of Pennsylvania:  "We believe that this work provides additional data supporting the notion that C9orf72 methylation is neuroprotective and therefore opens up the exciting possibility of a new avenue for precision medicine treatments and targets for drug development in neurodegenerative disease,” says McMillan.

So all of that is number 1. Hope, again.

For number 2, I encourage you to read this deeply moving essay by Daniel Zalewski in the March 30 issue of The New Yorker. Titled "Life Lines," it traces the journey of a former New Yorker illustrator whose brain, attacked by a virus, now lives in the ever-present now, most of her hippocampus destroyed. Researchers are studying her ability to learn and form memories within this new neuronal environment. There is hope there. There is also the prospect of new science.

Finally, for numbers 3 and 4, I encourage you to return to two blog entries posted earlier in this year. The first reports on Judith Scott, a woman born profoundly deaf and with Down syndrome, whose artistic capabilities were unleashed late in life—that brain wanting art again. The second reports on the lawyer Patrick Fagerberg, who was struck in the head at a music concert and diagnosed with traumatic brain injury. Here again the brain compensates and, in compensating, chooses art.

This—the compensating brain, the deep neuronal desire to make beauty out of chaos—is the theme of One Thing Stolen, a book that takes place both in Florence, Italy, and on the campus of the University of Pennsylvania (and features some Penn students as key characters.) Some of what I'll briefly touch on during our 7-Up tomorrow night.

Hope to see you there.


Junior Fellows Program

6:00 PM in the Arts Cafe

As this years recipient of the Kelly Writers House Junior Fellows Prize, Hannah White has undertaken a project to make the Writers House a space where we can talk about issues of mental health and illness from a writers perspective. In traditional "7-Up" style, seven different people (students, professors, community members) will each select and then write/speak about an important novel, short story, or poem dealing with issues of mental (in)stability. "Important" can mean anything here: personally important, culturally important, historically important, obscure but interesting, challenging to the traditional ideas of illness and wellness, etc. We hope that a wide range of perspectives and literary works will bring together seemingly disparate subsets of the wider community—and will also reveal plenty of interesting ideas about health, culture, relationships, and what is "normal."
  • Ryan Cambe
  • The Metamorphosis by Franz Kafka
  • Beth Kephart
  • One Thing Stolen by Beth Kephart
  • Devon O'Connor
  • "Round Here" by Counting Crows
  • Nick Moncy
  • Winesburg, Ohio by Sherwood Anderson
  • Julie Mullany
  • "Barbie Doll" by Marge Piercy
  • Emily Sheera Cutler
  • Thirteen Reasons Why by Jay Asher
  • Claudia Consolati
  • Melancholia, directed by Lars von Trier
  • Lance Wahlert
  • Narratives of suicide
  • Michelle Taransky
  • "Howl" by Allen Ginsberg


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