In 2006, Scottish writer Candia McWilliam developed Blepharospasm, a neuromuscular disorder causing the eyelid muscles to contract shut, resulting in functional blindness. Accompanying symptoms include photophobia (light sensitivity) dry eyes, and spasms of the forehead, mouth, jaw, and neck muscles.
Blepharospasm is distantly related to Tourette’s Syndrome and can manifest in facial twitching and swearing. Treatments range from a ptosis crutch, a gizmo that holds the eyelids open and will be familiar to anyone having seen either A Clockwork Orange or the Guns n’ Roses music video for “Welcome to the Jungle”. Another popular Blepharospasm treatment is strategic injections of botulism toxin into the malfunctioning eyelid muscles. In the most severe cases, the afflicted may endure drastic surgical procedures essentially pinning the eyes open. While all these treatments are effective to some degree, none cure the disorder.
For the bibliophile who is also a writer, Blepharospasm is the cruelest of afflictions. Certainly this was the case for McWilliam, who is unsparing in her hatred of blindness. Horrible as it is, McWilliam’s Blepharospasm is outstripped by her self-hatred. Her memoir, What to Look for In Winter, is the most self-scourging book I’ve ever read.
McWilliam’s struggle with blindness began while she was judging England’s prestigious Man Booker Prize. Judges must read copiously in a short time, leading her doctors to diagnose eye strain. But McWilliam had spent her life reading copiously, and as her face twitched, her eyes hurt, and her lids stubbornly clamped shut, she received the correct diagnosis.
At the time, McWilliam lived alone in Oxford, England. To say her life descended into a hell is worse than a cliché: it’s a falsehood, for McWilliam’s life has been a series of hells. Her mother committed suicide at age 36 in McWilliam’s bed. McWilliam was nine. In short order she had a stepmother and two half-siblings. Two marriages have failed, she’s overcome crippling alcoholism, and though a surgical procedure has partially restored her vision, she is in constant pain.
Beneath these physical difficulties lies McWilliam’s darker sense that her very existence encroaches on the lives of others. The book is littered with apologies, particularly for the unseemly public complaint she finds inherent in a memoir. What to Look for In Winter, we learn, began as a much shorter book, expanded upon after McWilliam decided hers was a life “exemplary for self-unhelp”.
Blindness sends McWilliam deeply into herself and her past, leading to the book’s sole weakness, a tendency to overburden the story with too much detail. She adored her bohemian mother, who wore wigs, plunged her clothing into vats of dye, and pored through junk shops; she was also inordinately fond of zoos. McWilliam’s father, Colin McWilliam, was a famous preservationist who worked to save Scottish historic estates, often going so far as to restore crumbling sites himself. His relationship with his daughter was fond yet remote.
The family traveled a great deal to various estates, allowing Colin McWilliam to undertake dangerous repair projects. As he climbed ladders and rooted in crumbling stone, his daughter worried for his well-being. These stressful journeys incorporated yearly visits to each set of grandparents.
Familial relations were stilted: nobody much liked one another, and visits were little more than obligatory. This was hard on a precocious child. So were her parents’ evident marital difficulties: they were verging on divorce when her mother committed suicide.
Colin McWilliam rapidly remarried a Dutch woman who set about civilizing her stepdaughter with diets, exercise, and instruction in proper housekeeping. Dinner was served on good china, the brass address numbers and door-knocker polished weekly. Breakfast preparations began the night before with correct table settings. Reading became an illicit activity: when caught, McWilliam quickly hid her book and tried to “look busy”. The appearance of step-siblings Nicholas and Anna-Sophia never ceases to amaze her: “Both my half-siblings are a charming combination of their parents and I can never believe or understand why they are so nice to me.”
McWilliam is amazingly forgiving of her parents—her mother, her father, her step-mother, whose attempts at reforming her stepchild, to hear McWilliam tell it, were well-intended. Still, to have lost one’s mother only to be taken in hand by another woman months later must have been brutal.
Feeling herself an intruder in her father’s new family, the teenaged McWilliam decided to attend boarding school, winning a scholarship to the Sherborne School for Girls, where she was “an odd fish”. Her isolated upbringing left her unprepared for making friends, though she met and remains close to sisters Jane and Katie Howard.
Hungry for family life, McWilliam happily fitted herself into the large, easygoing Howard clan, spending much time at the family seat on Colonsay, an island in the Hebrides. The island is a rural paradise, dependent on boats and small aircraft for connection to the outside world. Here the usually sedentary McWilliam combined bibliophilia with fishing and camping excursions. Her tendency toward overweight diminished.
During her time at Sherborne, McWilliam won the Vogue talent contest. After college, McWilliam worked at the magazine, falling in with an elite group of friends. These people encouraged McWilliam to write seriously. She lacked confidence. Of her time at the magazine, McWilliam writes, “I was so lucky… that I did what I can do when things seem to be going rather well. I sabotaged them.” Yet her superiors, who included Joan Juliet Buck, Grace Coddington, and the late Liz Tilberis, all liked McWilliam and treated her well, which doesn’t jibe with her nasty self-assessment.
Ever-weight conscious, McWilliam starved herself to fit in with her colleagues. Six feet tall, blonde and slender, McWilliam became the recipient of unwanted male attention: “I was being courted by a number of countervalent men… They took me at what was increasingly my face value, a skinny babe… I had no idea how to transmit to them that I was a trapped bookish fatty who was no good at working at Vogue.”
In 1981, McWilliam married Quentin Wallop. In deference to his privacy, McWilliam says little of him, though what she does say is complimentary. The couple had a son, Oliver, and a daughter, Clementine. The single unalloyed thread of pleasure McWilliam appears to take in life is her children, and it’s clear their presence remains incentive to halt the worst of her self-destructive behaviors.
After leaving Wallop, McWilliam wrote her first novel, A Case of Knives. She then become involved with her second husband, Fram Dinshaw. Dinshaw is a Parsi Zoroastrian whose mother, Mehroo, could not abide McWilliam, even after the couple married and had a son, Minoo. McWilliam, longing for mother figures, desperately wished for Mehroo’s goodwill, to the point that she allowed Dinshaw to spend weekends and holidays with his demanding mother. During these times, McWilliam drank heavily.
Where another woman would have hated such a mother-in-law, McWilliam writes flatteringly of hers. Mehroo Dinshaw was a talented artist, turning her abilities to her home, garden, and cooking. Watching her cook, McWilliam writes, was “to watch an artist at work.” She compares Mehroo’s precision in household matters to a ballerina’s movements. Yet her actions tore McWilliam apart.
In 1996, McWilliam left Dinshaw for another man, a decision she rues to this day. The couple have never officially divorced, though Dinshaw makes a home with writer Claudia Fitzhebert. The couple live with Fitzhebert’s ex-husband and a floating tribe of visitors, children from various marriages, and, at times, McWilliam herself.
McWilliam and Fitzhebert are close, and as McWilliam’s health deteriorates and she suffers a variety of blindness-related mishaps, from black eyes to an apartment fire to a broken leg, the couple suggests she move in with them. McWilliam, who has a horror of being dependent, refuses their offer, opting instead for a surgery called the Crawford Brow Lift. It is, to quote Alexander Foss, McWilliam’s surgeon, “a pig of a surgery”, involving stripping the muscles surrounding the eyelid, then taking tendons from behind the knees to act as wires, pinning the lids to the brows. McWilliam’s sight was partially restored—she can now read—but she will require botox injections for the rest of her life.
Self-hatred winds through What to Look For In Winter like a poisonous river. McWilliam continually describes her appearance so viciously that I actually consulted the internet—something I’ve never done—to see whether she could possibly be so monstrous. The ogre McWilliam sees as hugely, chair-breakingly fat and ugly was an absolute stunner who once modeled Levi’s. Now aged 56, her face is scarred by surgery and the medications she must take have enlarged her frame. She nonetheless remains a striking, attractive woman.
McWilliam is no kinder to her inner self. She will never forgive herself for wrecking her marriage to Dinshaw, whom she still loves deeply. She describes her alcoholism with such excoriating intensity that the words all but burn the page (she is now sober). She wonders if the Blepharospasm, occurring a decade after leaving Dinshaw, is the physical manifestation of “a metaphor I had inhabited for a long time.”
Of her mother-in-law’s demanding Dinshaw’s presence at weekends or speaking to him in Gujarati, she writes “I did not think I deserved a place at the table.” Though she writes in past tense, this feeling pervades the book. There is some solace in McWilliam’s growing recognition that she may be a decent person after all, deserving of a place at the table—maybe even near the head—and in the knowledge that she is surrounded by loving friends and family.
Interestingly, McWilliam’s blindness runs outside the narrative, assigned its own chapters detailing doctor visits, drugs, a visit to a shaman, and the countless ways blindness can ruin a life or, in McWilliam’s case, make a difficult life worse. As an American reader, I was struck by McWilliam’s attitude toward Blepharospasm. She regards it as deserved punishment meted out for earlier bad behaviors, decidedly not an affliction to, in the American way, accept and even make meaningful. Atop this she carries a strong sense that her sufferings protect loved ones from harm, a notion disabused by friend and fellow writer Julian Barnes.
McWilliam finds nothing lovely, edifying, or uplifting about blindness and its attendant disability. Not for her the heart-warming stories of Helen Keller, Christopher Reeve, or Oscar Pistorius. American readers who buy into the prevailing myth of The Happy Disabled Person Who Is An Inspiration To Us All will be discomfited reading about McWilliam’s encounters with unkind strangers, constant injuries, or having to part with her precious cats, whom she is unable to care for.
Worse is the loss of reading, the happy immersion in the printed word: audiobooks offer limited solace. Writing also becomes a physical difficulty. Portions of What to Look for In Winter were dictated to a typist, while the rest was written by McWilliam herself, typing with one hand, pulling her forehead upward with the other.
Blepharospasm’s physical manifestations are appalling: McWilliam endures twitching facial muscles, grinding teeth, dry eyes leaking thick, burning tears, and scarred facial skin. Her jaw works uncontrollably and she developed a tendency toward swearing. She writes of being unable to look into another’s eyes, and the necessary compensations for losing this most intimate level of communication.
The Crawford Brow lift restores some of McWilliam’s vision, but at a cost: her face is “bodged” by scarring, she has a great deal of pain, and has become an almost complete recluse. She realizes a forced return to the world is necessary, white cane in hand, and that the journey will be a difficult one. What to Look for In Winter, her first book in 13 years is a first step, reaching out to fellow sufferers while cultivating, one hopes, understanding in those of us fortunate enough to take our vision for granted.
"Deep at the existentialist heart of this story there's a solemn treatise on the socially inequitable struggles between the worlds of the child and the adult.READ the article