If, like the author of a recent memoir, I had had my leg gruesomely smashed by a horse, or, like a favorite poet, had been dragged by a different horse until my neck broke, I might feel more entitled to write a story of my body. The drama of a woman inadvertently damaged—almost killed—by a beloved animal is undeniable; we ask not only will she survive the surgeries and the long recuperation, but also will her relationship with that thousand-pound companion remain intact? We watch the memoirist, after a long convalescence, once again mount the unwitting culprit, or the poet settle her seat bones onto a familiar back. We sigh, knowing as we knew all along, that these are not tales of blame or revenge. They are stories of the human body and its amazing ability to persist.
My story contains few horses and for the most part eschews drama. I slip into its narrative without the jolt of heart-stopping accident—without flashing images of iron horseshoes or the ground leaping up to slam into the frail human. No imminent death avoided by a few minutes, no blood pooling onto the ground, no jagged remnants of flesh and bone whispering “amputation”, whispering “paralysis.” Such events, in addition to being full of pain, are graphically vivid—the torn artery pinched tight by a stranger, the metal contraption screwed into the skull, lending itself to metaphors of birdcage and halo while the body slowly knits back together. But what image can convey the lurking presence of rogue genes?
My story begins at least one generation back, and probably many more. A gene is corrupted; kidneys fill with cysts, someone—perhaps a great-great grandparent long before the invention of dialysis—loses the ability to filter his or her blood and dies. This polycystic gene also carries within it a heightened risk of aneurism: one day, in the time it takes to inhale, the wall of some artery can balloon out and burst—a disaster that I’ve feared and visualized for many years. That is what happened to my brother whose aorta was at first repaired and then, no longer repairable, left leaking until he died. I was with him not long before he succumbed to the blood loss, but he seemed quite normal—just old. The photograph I have of him from that time reveals no injury. His internal wound is invisible as he sits on a bench by the under-cliff walk, while behind me the waves slide across flat rocks covered with pungent seaweed. He’s wearing a panama hat and a crumpled jacket, and looks like a literary figure, which he is not.
Then an entirely different wayward gene comes sliding down the generations, landing on my mother or my father, and then on to me. This second mutation offers up Charcot Marie Tooth Disease, a condition that, unlike the cystic kidneys, has asserted its presence ever since I was child, though back then I’d never heard of it and had nothing other than the clumsiness of a lanky girl to blame for its tricks.
By the time I was fifteen, I was six feet tall, which made me a natural choice for goal shooter on the netball team (netball being an English girls’ game not unlike basketball.) Someone would drive the ball low into my waiting hands, or lob it over the shoulder of a defender for me to snatch. One graceful bend of the knees, a spring upwards with the ball poised above my head, and I sent it sailing cleanly through the hoop, hardly disturbing the eponymous net hanging from the iron ring. While the ball was on its journey, cheered on by screaming supporters, I, too, would descend from my inspired leap, my gym shoes—which were what we wore before high-tech footwear—thumping down onto the black asphalt. I remember how it felt as the ground met the bones of my feet, jarring up my shinbones to my knees.
Netball was a winter sport; in summer we played tennis. One hot day at an away match against our rivals, Roedean, I crouched at the net and shrunk my long self down as my partner served a good one into the corner. Then the ball was coming back, not exactly towards me, but surely with my long arms I’d be able to reach it. It would be spectacular: I’d leap across, intercept it at the middle of the net, and volley it away. When the ball connected with a satisfying thunk right in the center of my strings, I was airborne, at full reach. I knew we’d won the point as I landed hard on my front foot and felt the ankle buckle.
In the locker room, the foot looked puffy and was beginning to show purple bruising. Expertly, I wound the crepe bandage I always carried with me around my ankle and under my instep, secured it with a pin, covered it with a sock and went out to find the bus. It was a routine part of playing sports.
I did have actual accidents that offered images far more vivid than those invisible genes. I was about ten years old, for instance, when my bike collided with that of my next-door neighbor, Tony, on a gravel road. I flew over the handlebars, Tony fled the scene, and I stumbled home, holding a badly broken left arm in my right hand. When my mother saw my bloody, scraped face, she promptly passed out on the lawn. A few years later, at pony club camp, I flew again, this time over the withers of my friend Leila’s pony, after a race where Leila and I had to hold on together aboard the slippery, round-bellied little beast. We won the race, but then the pony bolted across several fields and dumped us onto rock-hard ground. That time it was my left shoulder that snapped.
Aside from these mishaps, my body proved adept at many things. Although my ankles were too weak for ice skating, I was a terrific roller skater, tearing down the middle of our street, my metal wheels rattling as the sweep of my arms to left and right propelled me into top gear. When it rained, my friends and I would take over our three basement workrooms and go round and round on the concrete floor, pretending we were on a racetrack, until we were choking and coated with white dust. I remember how it felt to push off at an angle, my left foot planted firmly and how neatly I backed up into a tight circle and came to a standstill.
I wasn’t even too bad at gymnastics, though I never got over my embarrassment at emerging from the cloakroom in baggy, navy blue, flannel knickers. I could vault over the suede-covered horse, climb a rope all the way to the cross beams above the gym, and go high enough up the wall bars to hook my legs over and hang backwards till I was red in the face. Like tennis, gym often required the use of a crepe bandage, but unlike tennis it wasn’t worth the pain, so I looked for excuses to avoid it, especially on hot days when the gym stunk of sweat. Most of my classmates could plead cramps or heavy bleeding, but I was hopelessly behind in that area. Flat chested at fourteen, not menstruating for another year, I was unable to enter the menstrual plea and for some reason was unwilling to offer up my constant sprains. Did I worry that they revealed a shameful weakness or was I just afraid I’d be taken off the teams? I did believe that my height required me not only to act older than I was, but also to be robust—a belief that I haven’t entirely banished even now.
My parents died so long ago that I never saw the impact of Polycystic Kidney Disease or Charcot Marie Tooth Disease on either aging body. When my brother’s doctor finally advised him to let us all know about the kidneys, I discovered that I did share that problem, but the other one—the one that had actually been producing symptoms—defied diagnosis for many more years. Several times I went to see my internist, a smart and thorough woman, who sent me to the hospital’s X-ray department to get a picture of the offending ankle. No fractures. No cracked bones. So I went on walking the dog, scrambling up rocky trails, and carrying crepe bandages. At some point I discovered elastic supports that were a lot easier to snap on with Velcro than the stretchy rolls of material I had managed for years. I also began using an ice pack or, when stranded in London without one and walking miles between buses and trains, a packet of frozen peas. But when my doctor moved on, the new guy took one look at my high-arched feet, with their curled toes and swollen ankles, and sent me to a neurologist to test for a disease whose name I didn’t catch—something about a shark’s tooth? My partner, Ruth, and I referred to it as Shark’s Tooth Disease until I tracked down the names of the three doctors who had identified it: Monsieur Charcot, Monsieur Marie, and Mr. Tooth. When I asked the neurologist what to expect in the future, he said jauntily (he was a little man much given to jauntiness):
“Well, look at it this way. You’re fifty-two now. By the time you’re a hundred and four, it’ll be twice as bad.” He twinkled at the joke, which he must have made dozens of times before, and sent me on my way.
I wouldn’t want you to misunderstand me: I do not long for a dramatic, bloody accident; what I’d like is simply a way to illustrate my body’s narrative. But how to depict genetic wanderings from the norm when there doesn’t seem to be a suitable image for either of the two culprits?
I’ve seen photographs in medical books—the kidney, for example, bloated and heavy with cysts—and watched my own kidneys tossing around as if lost at sea on the ultrasound monitor. But Charcot Marie is even harder to picture than those oversized kidneys: a nerve runs the length of a leg or arm—an invisible thread, a nebulous thing. Does it look like a fishing line or a piece of cobweb, or perhaps a long strand of white hair? Instead of trying to imagine the nerve itself, I picture my deformed, numb foot or the thumb that locks into a cramp across the palm of my hand.
What I need is a tiny camera that can enter my blood stream, as it does in TV shows such as House, dashing through lurid, blood red tunnels, and focusing on the guilty gene. You’d see it then as it’s diagrammed in articles on the web: a double helix, its twisted, intertwined ribbons suggesting the number eight. Perhaps you’d even pick out the responsible one looking a little sheepish next to its healthy mates. But as a leading character it lacks charisma.
In spite of annoying sprains, for three decades I enjoyed what I didn’t then know would be the best possible version of my physical self. Oblivious of potential damage, incipient deterioration, the muscles’ creeping reluctance to move the bones gracefully and with strength to spare, I can still remember one good calf muscle lifting the full weight of my six-year-old self from square to square to square of a hopscotch concourse chalked onto the pavement. At twelve, I knew how to vault onto a horse’s back, right leg swinging out and across with perfect timing, and at twenty-five I worked with enthusiasm at the balletic, sometimes ungainly, choreography of sex. I could absorb the burning sun on a beach and then pull myself, weightless, through clear water all the way to the orange buoy beside the sailboat. Even when hurled by huge surf onto the beach, my body knew how to dig its heels into the cascading back-tow of shingle to gain a few inches as each subsequent wave slammed down on me.
I remember enjoying that body, even while two diseases were gnawing away at it, unbeknownst to me. It’s true that I might have controlled the blood pressure sooner if I’d known it would keep my kidneys healthier; more useful, though, would have been learning how to slow down the deterioration of foot and hand muscles and what to do about the stabbing pains of neuropathy in the middle of the night. When I did find out about the genes, it was something of a relief: the soaring blood pressure and frequent back pain, the puffy ankles and unstable feet were all explained. On balance, though, I’m glad I didn’t live my young adult life carrying the weight of that knowledge around with me.
For one thing, I would have had to explain, which would simply have nearly killed me with embarrassment. The easiest explanation came in the form of joke, and started with my brother’s wife, who suffered from eczema and asthma. Her wrists, which spent more time than they should have plunging into soapy dishwater, were red and cracked and she had only to see a distant horse to start wheezing. Since both these conditions are said to be exacerbated by stress, it’s possible that my often-annoying brother played a role in her suffering. Rather than curbing his tendency to speak in repetitive clichés or offering to wash the dishes once in a while, he, who was a star athlete, would look at her weeping sores and remark, “poor material.” This was not said with malice; it might even have been his idea of a companionable joke.
When they’d been together long enough to perfect the marital chorus several times over, an odd reversal took place. She, who had been considered to have flaws in her physical make-up, having birthed and raised three children, grew out of her recurring ailments. And he discovered that he had a genetic disease of the kidneys. Nowadays, when I stumble, or complain that I’m spending too many hours with physical therapists and doctors, Ruth looks me in the eye, repeats “poor material” and we laugh.
It’s hard to write about genetic diseases without telling family stories. Which of my parents had passed which condition? It seems likely that whoever it was in each case, he or she never knew. Both had died in an accident when I was nineteen and both had lived in England where the usual British stoicism about health kept them away from doctors except in emergencies. Back pain in the kidney area would not have been considered worth mentioning.
The most extreme member of my family as regards medical matters is my sister. After adopting two children, she became pregnant at forty, but failed to tell anyone. We all thought she was getting fat, but being English, none of us said a word. When it finally became apparent that she was about to add a third child to her family, she acted as if it were merely a logistical problem. She was a concert pianist and giving birth couldn’t possibly interfere with her schedule. At the appropriate time, she took herself to the local hospital and demanded the baby be induced so she could get back to preparing for her next appearance.
Perhaps it will shock an American reader to learn how this same sister (whom I love dearly) dealt with her husband’s heart surgery—an episode I believe reveals more about cultural attitudes than about her as an individual, and might, too, explain my own struggles to choose frankness over faux-fitness. My brother-in-law had suffered two major heart attacks and in his eighties was becoming impaired by new blockages. He had trouble climbing stairs and couldn’t manage the long walks he had always taken with my sister and Humbert, their German pointer. Being a brave spirit with high standards for his life, he opted for the triple by-pass that would fix it, in spite of warnings by the surgeon that his organs might not be up to it. He signed a release form and waited until his turn came round on the National Health Service.
It so happened that I was visiting them when the call came a few days ahead of his operation. The evening before he was due at the London hospital some fifty miles from their Sussex home, he sat at the kitchen table with his already-packed, small suitcase beside him, studying the train timetable. Surely my sister, or at least the grown-up son who lived with them, would drive him to the hospital? Failing that, I offered myself as chauffeur. But it was all arranged; he was to take the train by himself and my sister would go up to visit him two days after the operation. There was no point in her going sooner, they assured me, as he would be “too out of it” until then.
On the day of the surgery, I went off for a walk. When I returned, my sister looked as if she had been crying, but since I’d never seen her cry except once at our parents’ funeral, I wasn’t sure. Fighting the old, familiar urge to pretend nothing unusual was happening, I ventured, “So, have you called the hospital?”
“Not yet,” she said. “Do you think it’s time?”
“Yes I do,” I said firmly.
He was out of surgery and the bypass had gone well. Later that evening, I had to prompt the grownup son, who hadn’t mentioned it at all, to ask his mother how his father was doing.
I know that most people like my sister are not callous, even though many Americans, as well as people from other class backgrounds in Britain, might interpret their behavior that way. I, myself, have come to believe that they are simply terrified—they haven’t a clue how to think or talk about illness and are afraid of where talking might lead. The question is, how much of this has remained lodged in me, even though I’ve moved to a new culture where I ought to be less inhibited? My sister being eleven years older, married, and entirely focused on her keyboard, missed out on the social changes, the burgeoning openness, that swept through my own life. Still, I retain enough of our shared origins to stubbornly resist that absolutely worst transgression, “making a fuss.”
What cannot be said aloud has a great deal of power over us; the unspeakable threat is the most paralyzing threat of all, which is why death and disease—including un-dramatic chronic diseases—deserve to join the list of things worthy of discussion. Virginia Woolf declared that the state of being ill was noticeably missing from the prime themes of literature, just as it was surely missing from most of the conversations around her. She suffered from both physical and mental illnesses and was banished for long periods of time to her bed, forbidden to write.
The people I grew up with exhibited an unaccountable shame at the mere thought of illness. English doctors, even now, aren’t always straight with you, and when they fail to work a miracle and someone dies, the funerals—small fish paste sandwiches, tea, and small talk— are revealing of a culture that is above all embarrassed by death. Fortunately, I overcame the handicap of this background by moving to the west coast of the USA where I learned not to feel guilty for getting sick, or run away from bereaved friends, and not blush at any mention of my own disability.
Lately, I’ve had to admit that Charcot Marie, the disease I’d always considered the lesser of the two problems, is beginning to affect my hands as well as my feet, and recently I met a guy who also has it. He walks with a more pronounced limp than I — a result of “foot drop” — and wears a sophisticated brace that allows him to bicycle and go on long hikes. He’s been to many doctors, most of whom have treated him as dismissively as the specialist I’d found had treated me: apparently, we were neither of us incapacitated enough to be interesting. Did we have to wait until we were in wheelchairs before we’d get some attention?
Suddenly alerted to the dismal possibilities, I studied the peripheral nervous system, peroneal muscular atrophy, axons, myelin, and mitochondrial protein, but it’s the kind of information I can’t retain, so I immediately forgot it. I did start to take it more seriously, though, when I had three bad falls in one year. Lying flat on my face in the dog park, not once but twice, had failed to get my attention, but after the third fall I found a neurologist specializing in neuromuscular diseases. With her help I went through a battery of tests and acquired a made-to-measure orthotic as well as a physical therapist who understood the Shark’s Tooth. Now I’m working on my poor balance and on strengthening the muscles I still have left to carry me around.
Charcot Marie affects me more and more in my daily life, starting at the moment I open my eyes in the morning and scan the floor for my solid ankle brace without which I can’t even cross the room. The dog licks my bare legs in a frenzy to go for his morning walk and I explain that it will take a few minutes. Once the weakest ankle is braced, I can hobble to the kitchen, deal with dog breakfast and coffee, and strategize the pulling on of suitable shoes. In summer, it’s infuriating no longer to be able to wear sandals, but rather to need socks, plus a brace that looks like a boot with laces up the front—something you might expect a little lame girl in a Dickens novel to sport—that must fit inside whatever shoe I choose. At the door, I debate whether or not to take a cane: depends on where I’ll walk, whether the ground will be flat, and how many rowdy dogs might rush downhill at me, at which point the cane, planted firmly in front of me, might offer useful protection.
Even speaking of this feels to me like pathetic whining. The family voice that still lives in the back of my head tells me to shape up—tells me I can still walk, still travel with care, that there are really sick people in this world. And it’s true: slow-moving, chronic illness, even chronic pain, is something I believe I should keep quiet about. But nevertheless I am learning how to request help. I need rides when I teach on a sprawling campus and have limited time to get from a lecture to a class; I need my friends to understand that Charcot Marie drains what muscle strength I have left and that by evening I have trouble getting up from a chair. I now limit my commitments, discuss future possibilities (a folding wheelchair for travel?), and gradually absorb the shocking fact that I am mortal. Of course, many people of my age have long been grappling with that stark truth about themselves, but I’m the kind who needs the daily reminder of my body’s deterioration to look it squarely in the eye and to speak of it.
When you carry an inherited disease, you find yourself looking to previous generations in an attempt to deduce its pathway. For me that has been virtually impossible since I never met any of my grandparents. The only one I even know anything at all about is my grandfather, Daniel Lambert, who, although a lawyer by profession, was an amateur astrologer and, in family mythology, an all-around eccentric. A few years ago, I discovered a hard-cover, black notebook of his, in which he had carefully drawn birth charts of his parents, his siblings, and his children, one of whom was my mother. Recently, I dug out this notebook, thinking it might shed some light on the health of my forebears, but trying to track genes by way of the stars turned out to be an impossible task.
After his own chart, Daniel had filled out, in now-faded blue ink, a detailed column with predictions into the future about probable occurrences. In another column beside this, headed “remarks,” he entered the real events that seemed to match his predictions, but sadly his references to ill health are mostly nonspecific, except for one reference to having the measles and another illegible disease that caused his removal from school.
Closer to my own lifetime, a more substantial clue might be my mother’s legs, which I remember as lumpy with varicose veins. Her ankles were thick, her feet and toes contorted in the same way as mine. She had a regular appointment with a local branch of a chain of foot specialists called Dr. Scholl’s, where she received some kind of treatment; I would sit in the waiting room, turning the pages of unfamiliar magazines, while they did whatever it was. Possibly they dealt with her corns. More likely, she had the Charcot Marie gene and, like me, suffered from painful calluses under her feet, caused by the way the disease affected her walking.
Everyone said my mother had been stunningly good looking, as well as a fine tennis player in her youth, but as she was forty when I was born, I only remember her as she was in her late forties and fifties. By then, she had grey hair and walked as if her feet hurt all the time. If I had to bet on which parent handed me the shark’s tooth, I’d bet on her.
Severed artery, migraine, slipped disc, cataract; broken hip, prolapse, skin cancer, stroke. Severe, critical, minor, recurring; serious, painful, invisible or chronic; our diverse bodies are wounded, infected, broken or at the very least vulnerable. Sooner or later they will weaken—but so what? Some of us from the very beginning carry a crooked back or deviant genes; others will enjoy an unpredictable number of years before their bowels or brains, fingers or hearts, crave attention—or perhaps a sudden accident, horse related or otherwise, will snatch them out of their daily routines and relegate them to a hospital room. When that happens and they are stuck in bed, as Woolf said, “the whole landscape of life lies remote and fair, like the shore seen from a ship far out at sea.”
Long, long ago, I tossed the tennis ball up with my left hand, dropped my racket behind my right shoulder and stretched up to swing high over my head. Using timing more than power, my ace skidded past my opponent from the very corner of her service box. That was in my heyday. Occasionally I re-live a moment like that in a dream, only to wake and step out of bed, encountering the aches and pains, the upright perils of my drastically changed self. But despite chronic notes that drone in my head and unexpected falls that rattle my bones, even now I can surprise myself by observing that my body is still, in its own devious way, a miracle.
Dunn, Samantha (2003). Not by Accident. Holt Paperbacks
Kumin, Maxine (2001). Inside the Halo and Beyond: The Anatomy of a Recovery. W.W. Norton & Company
Woolf, Virginia (2002). On Being Ill. Paris Press