The Story Within: Personal Essays on Genetics and Identity (Johns Hopkins University Press) feels futuristically modern yet timelessly classic in the way that hard facts about DNA can govern basic life choices as never before.
Whether it be the rash of madness in my own family–or the issues presented by Huntington’s disease, Alzheimer’s disease, cancer, genetic deafness or blindness, cystic fibrosis, Tay-Sachs, hypertrophic cardiomyopathy, fragile X, or Fanconi anemia in the others–the depths plumbed through these pens, individually and collectively, show that the narrative of real lives can be so much richer than fiction.
17 essays by writers of major standing never feel weighed down and leaden. Some have foreknowledge. For many, like me, dialogue with others may be the only and, as it happens, the best way of demystifying conditions that have come to define our lives.
In that sense, the burgeoning field of medical humanities itself can constitute the very best form of intervention in society—or what Mara Faulkner, who has hereditary retinitis pigmentosa, and has lived in a Benedictine order for most of her adult life, calls a “community of compassion.”
Mara’s life, as revealed in her essay, is a shining example of how the blind really do lead the blind in the best possible directions.
All of these writers bring their own context to their particular gene pool. No one wishes to press their sadness upon the reader; on the contrary, the glow from the separate embers warms us all.
I’m humbled, personally, to be anthologized with such masters of the essay form as Charlie Pierce. Normally writing about sports and politics, in his memoir Hard to Forget Pierce reveals an acquaintance with family Alzheimer’s as wide as mine with family schizophrenia.
As the bell tolls for his father, Pierce is holed up alone in a hotel room after covering the Belmont Stakes. This one essay alone is worth the price of admission. (I won’t spoil the joke, but no writer has ever used the lonesome semi-colon more cleverly than Charlie Pierce does here.)
In the closing essay, Dear Dr. Frankenstein: Creation Up Close, Emily Rapp writes movingly on giving birth to a baby with Tay Sachs, only to watch his gradual blindness, paralysis, suffering and impending death.
As Tay Sachs destroys her boy Ronan, Rapp walks the line between her maternal desire to nurture her son to safety and the knots of guilt that she bravely untangles for us in wishing she hadn’t had him in the first place.
Disabled herself from a young age, in all of this Rapp is determined not to do what Dr. Frankenstein did with his creation. She would not abandon her boy. She does not abandon her boy.
My own contribution touches on similar territory, in that my mother’s abhorrence to madness was as natural as not wanting her children to suffer.
All writers were asked by Boston College English Professor Amy Boesky to take some time reflecting on what it’s like to live with information about our DNA, how we use that information to gauge relationships and plan legacies.
“I was repeatedly struck by the extent to which our connections and identifications criss-cross back and forth in complicated ways,” says Boesky.
For the professor of 17th Century English literature, the breast cancer gene is an inescapable fact of life that has befallen her family, taking her mother and grandmother. Boesky takes action, but it’s never over.
How she continues to confront it, territory previously explored in her beautifully drawn memoir What We Have, shows how family narrative evolves, the desire to know about threats in the gene bank only as strong as the solution at hand.
Or as my own long gone mom would say, quoting the Bard: What is without remedy should be without regard. That calculation becomes harder to justify as science marches on.
If the collection has a really unifying feel, it’s reinforced by some of the more surprising echoes that jump from essay to essay. ”Often the person whose experience feels closest may be facing a markedly different condition,” Boesky observes. ”The most subtle characteristics connect us; the most nuanced experiences render us distinct.”
I got my copy last night and have come to each essay as something special, like golden coins found in the gutter. You leave each essay feeling privileged to have been there to read something so brave and beautiful and wondering what the writers are doing in their lives right now, like the glimpse of a deer before it darts into the woods.
One poignant footnote was the passing of Anabel Stenzel, a contributor whose experiences with cystic fibrosis had led her and her twin sister Isabel Stenzel Byrnes into the fields of writing, film-making and international advocacy.
Anabel got her angel wings on Sunday.
Her legacy is enormous.
Says Boesky : “Whatever lies ahead, our sense is that deeper and more sustained conversations about these issues will be more important in the coming years, not less so.”
Writers include Misha Angrist, Amy Boesky, Kelly Cupo, Michael Downing, Clare Dunsford, Mara Faulkner, Christine Kehl O’Hagan, Charlie Pierce, Kate Preskins, Emily Rapp, Jennifer Rosner, Joanna Rudnick, Anabel Stenzel, Isabel Stenzel Byrnes, Laurie Strongin, Patrick Tracey, Alice Wexler.
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Last reviewed: 4 Oct 2013