Feeling Guilty Over a Remarkable Book
I couldn’t help feeling a weird sense of guilt as I read Elly Katz’s new book, “From Scientist to Stroke Survivor: Life Redacted.”
Elly has spent most of her life struggling with physical pain. In a piece we published in The Journal five years ago, she wrote:
“I crafted this autobiographical sketch while braced in a shoulder garment that hugs my right lower rib and shoulder, which dislocate during sleep almost nightly. A neck brace cloaks my cervical spine and offers some semblance of stability my frequent shoulder dislocations demand. My right arm, a helpless child uncertain of how to carry her own weight, tugs at the base of my scalp.”
Elly had been diagnosed with Ehlers-Danlos syndrome (EDS), a rare heritable connective tissue disorder that lacks a cure.
The piece was a triumph of the spirit, showing how Elly overcame never-ending ailments to thrive in academia at Harvard College. But however difficult those obstacles were, the story still had a familiar feel. We’ve all come across the cliché of a courageous soul overcoming disability.
Oct. 24, 2022 is the day Elly’s story stopped being a cliché. An unfortunate accident in the operating room made her past condition feel like a Hawaii vacation. Forget Harvard. Forget the dream of becoming a genetic scientist. Forget all those little pleasures she managed to enjoy despite EDS.
She had gone in that day for a routine set of injections to help with the cervical instability around her neck. But this is the spine we’re talking about; the margin of error is measured in millimeters. Tragically, a slip of the needle triggered a debilitating stroke and a hemorrhage that unleashed unbearable pain and paralyzed Elly’s right side.
As a way, perhaps, to create distance from her sudden nightmare, she wrote about it in the third person:
“Suddenly, she failed to locate her entire right side. The once watertight GPS system between her brain and her body was breached. ‘Mom, is my right side on the bed? Where is my right side? Can you see it? Is it there?’ Her interrogatories gushed forth, the questions colliding with each other breathlessly as her terror mounted. Her throat constricted around syllables. Her body plan felt remapped to an uncharted terrain relative to before… It jolted her like a harrowing nightmare, a plot twist crafted in a science fiction workshop.”
It’s striking how even physical despair could not sabotage Elly’s gift with words, her ability to render trauma with such cool precision.
“She could not determine where her right side ended, and the world began. Her sense of boundary dissolved. Her spine morphed from midline into a period, a hard stop, followed by a landslide of empty space. Her sense of center was catapulted to off-kilter. It still is. She lived out of context, at a remove from reference, inside the split-screen of her body.
“Her now overwrought and confused nervous system articulated a frightening fact. She forgot the geography of her right side, the drifting continents of ribs and limbs that were once paradoxically, disconcertingly, and lullingly welded to her torso. She could see it out of the periphery of her left eye. But feeling and seeing were so detached in her now. She longed to feel her right limbs against the gurney. She missed her once impervious right outline and felt like a vessel spilling out of herself, drop by drop, to the right.
“Fear overtook her, gripping her in a chokehold, its sour taste festering on her tongue. Her mother stood beside her bearing witness, a mirror of dense horror. Despair pooled in both of their eyes. Silence enveloped them inside an igloo of trauma.”
This is where my guilt comes in.
It doesn’t come from feeling sorry for Elly’s condition, although I’m sure there is some of that. It doesn’t come from the selfish guilt of feeling grateful for not being in her shoes, although I’m sure there’s some of that, too.
No, it comes from feeling guilty that her words were bringing me tremendous pleasure.
Is it callous of me to read the most heart-wrenching tale of physical pain and loss and think, “This is one of the most beautiful sentences I’ve ever read”?
Her prose disrupted my mind, confronting me with words I had never seen come together before.
“I muddle and contuse pronouns over and again throughout this narrative, as I grapple with the lack of distance between me and myself. I write through and into an experience so massive that I require techniques to capture it. Poetry, in its permutations and repetition, is the one steadfast technology I leverage for this undertaking. I am not concerned with making meaning but with coming as close as possible to it. Therefore, the source of this artwork is a hovering presence; trauma’s scale is a forest, while my ritual consists of drawing a single tree, a branch even, in lines of words that have proven to be essential lifelines.
“I glue myself together by taking a step back from the ‘I,’ not to bypass it but to earn my right ultimately to occupy it again.”
Elly’s incorrigible tenacity and love of life eventually lead her to occupy her ‘I’ again, in surprising and unlikely ways.
Her book is an homage to life through poetry, to the power of the poem to transcend the limits of language. Elly chronicles her post-Oct. 24 life in acute detail, using the lens of hundreds of poems that dance and cry on the page. The poems are divided into seven movements, like one long, epic symphony of trauma and survival.
A few notes from the first movement:
“I exist more like a vapor, spreading in all directions,
or perhaps stalwartly stationary.
It is difficult,
if not impossible,
to distinguish the two.”
From the fifth movement:
“Photons—
quanta bidding me to abide, to scavenge unwatched, primal light from my incarceration within the firm bars of disabled flesh, as robust a barricade
against being as the skin of that oak.”
From the last movement:
“Thrownness—
we exist on the perimeter of ourselves,
cows grazing outskirts of fields,
neglecting the racing evergreen heart at the center.
The random, askance universe does not catch us.”
There is a section in the introduction where Elly, overcome by her body’s devastation, feels somewhat useless and disoriented, fearing she might not have anything left to give.
Her raw, luminous prose in this remarkable book should put those fears to rest. For those of us who revere words, as well as life, this book is a pleasure festival, and I can’t help telling her that.
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