If there were an All-Star Team for memoirists struggling with genetic misfortune, then the writers gathered in Boston on Friday for the publication of The Story Within (Johns Hopkins U. Press) would surely be it.
More than a dozen contributors came to town for a fascinating day of panel discussions surrounding the book. As we all scrummed up at Boston College to compare genetic notes on Alzheimer’s, Huntingtons, fragile X, cancer, deafness, blindness, and cystic fibrosis, my family’s schizophrenia was, for once, in fine company with other writers shaped by genetic identity.
Plus, it was the first time we essayists have had a chance to meet in person since last month’s publication of this neat little classic in the burgeoning field of medical humanities.
Because writers tend to be an isolated lot to begin with, it felt like an interesting social experiment to see us emerge for a day of jaw boning. What we found was that, just by having personal essays in the same anthology, we automatically draw closer together. Instantly, through our mutual points of discovery, bonds were formed.
What’s surprising are the many cross currents found through waters as varied as Huntington’s, Tay Sachs, fragile X, Alzheimer’s disease, cancer, genetic deafness and blindness, hypertrophic cardiomythopathy, and schizophrenia. We’re all more watchful than tearful, over time, looking for many of the same silent sharks that cross our bows.
A natural kinship develops in all of us having some genetic “it” to write about. To one degree or another we write about the “it” of genetic mutation because, as Kelly Cupo puts it, we’re interested in having those “uncomfortable conversations” about the “it” sharks.
Uncomfortable but oh so necessary.
I hail from a clan chock full of psychosis, in addition to most of the other mental issues known to man, yet I’d heard the s-word uttered but once and only once in our household before the schizophrenia came crashing back, into our generation, engulfing two of four sibs when I was 17.
My sense is that all of these writers who have said so much still have an awful lot more to say yet about “it.” I know I do. I feel we all have an “it” of one form or another; it’s just that genetic “its” seem endlessly compelling.
In her essay, Mara Faulkner, a Benedictine nun who heard teaches literature and writing at the College of St. Benedict/St. John’s University, explores the notion of community and her family’s genetic blindness.
Faulkner views compassion fatigue as the enemy within that she cops to herself. “I’ve felt it,” she writes in her essay Community and Other Ordinary Miracles, “but this comforting phrase gives us an easy out, so we don’t have to look with empathy and respect at the third starving child, the third blind person tapping her cane across our broken lives.”
I warned you the writing was stunning. You should check out her 2010 memoir Going Blind.
Lavish praise is hard to believe so I’ll say it again. These essays, all sixteen of them, make this anthology an instant classic.
Christine Kehl O’Hagan carves indelible imagery about her Hell’s Kitchen’s family’s long struggle with Duchenne Muscular Dsystrophy. Her prose will leave you breathless. No one family should suffer so much.
Michael Downing’s Life With Sudden Death: A Tale of Moral Hazard and Medical Misadventures is a harrowing account from a whip-smart medical implant survivor that could make you think twice about ever seeing a doctor again. The irony here is that the medical intervention meant to save the life of the best-selling novelist and Tufts writing professor quite nearly killed him.
Jennifer Rosner’s If A Tree Falls: A Family’s Quest to Hear and Be Heard unflinchingly examines family, science and what it means to be heard. Her experiences as a hearing person negotiating the politics of deaf culture have echoed my own in dealing with the politics of mad culture.
Her training in philosophy guides her through some tricky political shoals. In an essay entitled String Theory, she takes us through assimilation issues unpopular in parts of the deaf community that feel that deaf babies are “altered” by technology or ”mutilitated” in surgery.
“We felt like we’d stumbled through a minefield: any answer carried a prejudicial judgment,” Rosner writes of weighing her responsibility as a mother with her respect for her children’s Sophia and Juliet and their deaf identity.
There’s no sentimentality–mostly unsparing examinations–and not an ounce of self-pity in this collection. I think we all bridle at the notion.
The rawness here comes from first-hand experience, the sharing of which seems to be the best nostrum for despair.
There are a fair few surprises. Some of the writers are downright contrarian. “Was I suffering when I was gasping for air?” asked Isabel Stenzel Byrnes, born with cystic fibrosis, and author with her recently departed sister Anabel Stenzel of the memoir The Power of Two: A Twin Triumph Over Cystic Fibrosis, which was made into a multi-award-winning documentary. “I’ve never felt like I was suffering.”
Five hours a day of back-pounding treatments every day to cough up mucus was somehow not seen as suffering. That’s something else.
Clare Dunsford’s memoir Spelling Love With an X: A Mother, a Son, and the Gene That Binds Them, may be the tenderest tale of all. She takes us into her world with her son J.P., who shows acrobatic verbal dexterity, a trait not uncommon in those with fragile X. Mother and son bring out the best in each other, making the best of a bad situation with perfect charm. No BS, this is how good mothering gets done.
One brave memoir, The Gene Guillotine: An Early-Onset Alzheimer’s Memoir, tells of five family members in one family struck by Alzheimer’s.”Being here isn’t easy for me,” author Kate Preskenis told the conference participants. “It is like pulling off the scab that covers my soul. A wound that never heals, but crusts over when I leave it alone.”
For the collection’s editor Amy Boesky–a visionary professor of literature at Boston College and author of What We Have, which explores one family’s relationship with the BRCA mutation associated with breast and ovarian cancer–genetic information has untold power to shape the way we see ourselves and our children’s lives personally.
Alice Wexler, author of Mapping Fate, uses the writing process to inform choices—in her case, whether to be tested for Huntington’s, an exploration that’s led her into the field of disability studies. Alice, like many of us, says she has used writing almost therapeutically to let go of the rage.
Several of us remained unmarried and childless. Some have made decision to get tested—or, more often than not, to forgo testing. (There is no blood test for schizophrenia yet.)
The leading light is the legendary Charlie Pierce, who you may know as the guy who shouts “sports” every Saturday on NPR’s Only a Game and writes the brilliant politics blog for Esquire.
You might not know that his Esquire piece on his family’s Alzheimer’s was a 1996 finalist for a National Magazine prize. Pierce expanded the feature story into his 2002 book Hard to Forget: An Alzheimer’s Story.
His essay Driving North reminds us that our genetic identities evolve and change as new information surfaces around the disorder that nearly tore his family apart. There has been an explosion of research in Alzheimer’s, yet thousands upon thousands do not know one way or another if they carry it .
Many prefer uncertainty to diagnosis, another big theme in these essays. ”Do they want to know?” Pierce asks. “Do they want their employers to know? Their health insurance companies?”
He points out that it’s the uninsured–not the folks on Obamacare–who would become their own death panel. Pierce is angry at the way people have shanghaied the health care debate to manipulate families that know no better. We should all be.
“The worst thing about these illnesses is thinking you’re alone,” he tells us today in a follow-up email. “The best thing is finding out that you’re not.”
“I think we’re all still afraid of the human genome,” Misha Angrist told the conference. Angrist believes, reassuringly, there may be less to fear as more pioneers make the trek into the genetic wilderness with the dawning realization that “only some of what we are is genetic and that part will not enslave us.”
His family suffers from no identifiable genetic disorders, but as one of the very first human beings to have his entire genome sequenced, an experience chronicled in his 2010 book Here Is a Human Being: At the Dawn of Personal Genomics, he’s the best possible lookout.
So run, do not walk, to purchase The Story Within today Amazon. Buy today!
This post currently has
You can read the comments or leave your own thoughts.
Last reviewed: 26 Nov 2013