An Uncertain Inheritance: Writers on Caring for Family
edited by Nell Casey
Published by Morrow
282 pages, 2007
The Pity of Things
Reviewed by Diane Leach
Five minutes ago, before I sat down to write this review, I put my husband into his standing frame.
A standing frame is just what it sounds like: a wheeled contraption, something between a walker or an exotic-looking piece of exercise equipment, that stands a person up. To get John into the frame, I lug it into the living room from its home on our apartment balcony. I lock one caster, for safety. By now John is behind me in his power wheelchair. He lifts his legs from the footrests and scooches forward in his seat, not too close, not too far. Facing him, I bend to wrap my arms around his waist. He returns the hug, around my midsection. I breathe in, thinking abs thighs, and, all in one go, lift and swing him around to the frame. Set him down. Lift his feet into the footrests and secure them with Velcro straps. He brings down the padded bar that hold his knees in place. I unlock the one wheel, swing him toward the television, and begin cranking him up. His body rises, rises, the seat becoming a backrest. My husband is taller than me again, albeit temporarily.
The frame has a table. On it I place the remote control, whatever he’s reading, his beer or whiskey.
Then I come in here to tell you about the book I finished tonight: writers on caregiving. I am not the most objective reviewer.
* * *
Editor Nell Casey set herself an unpleasant task: that of collecting war stories, a few from the victims, but most from their parents and children and spouses. In light of the ageing population, giving rise to the expression “sandwich generation,” and an appalling war with an even more appalling number of casualties who will need caregiving for the rest of their lives, this book could not be more timely. That doesn’t make it any easier to read. An Uncertain Inheritance is not the sort of book one gives as a stocking stuffer. Instead, you give it to the friend who is caring for her demented parent. She doesn’t have time to read it now, but she will, someday. The book may not make her feel better -- nothing will -- but it will make her feel less alone. You can feel less alone and not feel better. Trust me on this.
* * *
The pitfall of all anthologies is unevenness. Inheritance suffers little from this: only Susan Lehman’s strangely lighthearted “Don’t Worry. It’s Not an Emergency,” and Amanda Fortini’s “The Vital Role” left me shaking my head, and in fairness, Fortini was only 23 when she found herself ill and attached to an odd caregiver. Abigail Thomas’ “The Day the World Split Open” is a little New-Agey for my tastes -- too much about time for oneself and afternoons at the movies -- but then again, her husband died of head injuries after the piece was written: slack must be cut.
Everyone else -- from Julia Alvarez to Julia Glass -- has a wrenching story to relate. Each essay is a gut punch, and your life experience -- caregiver for child, caregiver for parents, caregiver for a person who lived, caregiver for a person who died -- will determine which writer will make you more heartsick.
I’m not telling you not to read this book. I’m just saying if you have Seasonal Affective Disorder, or hate the holidays, or have a 38-year-old husband with a degenerative neurological disease in the next room, well, you might want to take Inheritance slowly. With a drink.
* * *
You know what I really liked about this book? The honesty. There was no babbling about the comfort of God or the enduring beauty of flowers. Instead you have Helen Schulman saying: “I think that people like to believe there is a reward in the end for caregiving. There were no rewards.” Or Ann Harleman, who, writing of her husband Bruce’s catastrophic MS, says:
You have Jerome Groopman, so measured in his elegant New Yorker articles, telling his dearest friend that he has an aggressive cancer. You have Stephen Yadzinski’s barely suppressed rage as he recounts his teen years caring for his crippled father, who refused to help himself -- or his son -- by so much as installing a wheelchair ramp.
You have Ann Hood writing about the Strep infection that carried off her daughter Grace in three days. Grace was five. I have no idea where Hood found the strength to write this essay. Be sure you’re at home when you read this one. And make that drink a double.
* * *
There’s a squeak now -- John’s knees against the rest, an exhaling sound as he releases the lift, sending him down a bit. The frame locks his knees, causing soreness. Still, he must use it, or his bones will become brittle, fragile. A broken bone is too dangerous to contemplate.
* * *
Eleanor Cooney, writing of her mother’s Alzheimer’s in “Death in Slow Motion,” is utterly unsparing. She cannot bear watching her once witty and beautiful mother become confused, dirty, unkempt, violent. She cannot stand it so much she finds herself drinking morning, noon, and night. She also “popped Valium day and night. Beautiful pharmaceutical (Here the squealing exhale of the frame coming down -- “I’ll be right there,” I call, “just let me finish this quote.”): it unplugged the terror for a while so I could function just a little.”
Valium is indeed a beautiful pharmaceutical.
* * *
Reverse: lower frame to sitting position. Unstrap John’s feet, swing his legs and torso to face me. Lift, pivot, lower into him into the wheelchair. Tug frame back out onto the cold patio.
Once our feet got tangled up and I lost my balance. Time slowed, as it will before a terrible accident. I realized I was going to drop John on his spine, and the force of the fall combined with our wooden floor would break his back. So I leaned as far forward as possible: my goal was to get him, any part of him, into the wheelchair and spare his back. I managed to do so, but in leaning forward, I took the full impact of the fall on my left forearm, which smashed into the controller arm of his wheelchair.
There was no pain, only the sensation of bleeding under the skin. I ran my fingers up and down my ulna, searching for a break. It was late and I was tired. Instead of going for an x-ray, I went to bed.
In the morning my arm was purple -- a deep, sickening purple -- from wrist to elbow. Still no pain, only the tingling sensation of hitting my funny bone. The pain did not come until weeks later, by which time the bruise was fading to yellow. Three years later, my skin is still faintly discolored along my left arm.
* * *
“With chronic illness,” somebody warns Ann Harleman, “a lot of times the caregiver ends up dying first. Out of stress and exhaustion.”
Yeah, well, read Stan Mack’s entry about the jackasses driving his dying partner around in ambulettes or the bitchy nurses too inept to draw blood properly. Or the welter of insurance paperwork and drugs and regimens. Infer the complete lack of medical infrastructure in the United States for the seriously ill and their caregivers. No wonder we drop dead.
* * *
There’s one more thing I want to say about Eleanor Cooney’s essay. Her mother must be put into assisted living, and Cooney must pack her things. She invokes a lovely Japanese word for this: Kaiwaisoo, which means the pity of things. In this case, shoes, makes-up, a comb. Though I lacked the word until last week, I have always had another, private meaning for Kaiwaisoo, the pity of things. The pity of watching our neighbor’s 17-year-old niece drive away John’s Honda Civic. He was 29 and had become too weak to move his leg from pedal to brake. Nor could he rise from the car without my lifting him out. Kaiwaisoo: the guitars he can no longer play, quietly tucked deep in the closet. Kaiwaisoo: the power wheelchair. The battery charger. The extra battery charger. The manual wheelchair, just in case. The night ventilation. The night ventilation with the heated humidifier, distilled water only. His modified van. My modified van, because his breaks down so much (more Kaiwaisoo: watching my co-worker’s brother drive away my little silver Honda Civic). The bathtub chair, the raised toilet seat, the Ecco dress shoes he wears for work, with their perfectly intact soles.
The pity of things.
* * *
In writing such a tremendously personal review I am leaving much out. I feel the need to defend my husband; yes, he is losing so many things, more quickly than we thought he would. We both are. Yet the qualities that drew us together 15 years ago remain, if not untouched, largely intact. John’s intelligence, his kindness, his gentle demeanor, his patience with my moods. In this, I am more fortunate than many of Inheritance’s contributors.
* * *
An Uncertain Inheritance, then, is a book to own. You might not read it right away, but if you are like most of us, the day will come when you find yourself caring for a parent, a sibling, a spouse, a child. Or perhaps you will be the one requiring care. Then you will reach for An Uncertain Inheritance, not happily, but with a certain relief, for all illnesses are unmapped journeys to unknown lands, and it’s always helpful to meet a few natives along the way. | November 2007