My eyes are green. By the time I got around to seeing them again this July, I had forgotten what they looked like. Not that I have the eyes, nor the face, I had. I have little eyes that peep out through my modified face, like the eyes of a person metamorphosed, caught within a burly trunk.
Let me explain. Over the course of 2006, from February to October, I was involved in two processes: I was a judge of that year’s Man Booker prize for fiction and I was going blind, although my eyesight was excellent. As I read, I began to notice that my eyes wouldn’t open and I had an ache in the head as though a sharpened metal star had lodged in the top left-hand wedge of my brain. With my fingers I held my eyelids up. They became raw from being dragged and held. My eyes’ surfaces dried out.
By the time of the prizegiving, in October, my eyes had started to resist my prising-open of their lids. I was all but stone blind and stricken dumb. I couldn’t confide my situation for fear of embarrassing the Man Booker. Two years of encroaching dark and despair ensued. I had blepharospasm, a rare and mysterious condition — sometimes diagnosed as psychological — that prevented my eyelids from opening. Blepharospasm is a cunning, baffling, powerful adversary. Behind my eyelids my eyes continued to function, so I was aware of light and darkness: I merely could not see.
I visited more than 20 doctors, but the National Health Service was unable to help. I was resistant to the usual relief: Botox injections. I tried trick specs, artificial tears, forms of psychotherapy, massage, hypnosis, drugs, electronic impulses and a delightful lady shaman in Edinburgh. I did not think I would see again but six weeks ago, thanks to a surgeon of rare control, intelligence, skill and imagination, I returned to the world of sight.
I am, at 54, a readjusted anatomical construct. The tendons from the back of my right leg have been harvested (that is the word used) to suspend my eyelids like those dowdy blinds that were popular in the 1980s. My eyes are stitched open, their gaze tethered by a rig of stays made of tendon, cleated into place with stitches. I feel the tendons running through my forehead like curtain pulls. I take good care not to look in the mirror, reasoning that it would be ungrateful to complain about looking odd. As for my leg, it has a deep surgical wound that requires packing with alginate rope — seaweed — every other day. Walking is hard.
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It is one of the many trying aspects of intractable benign essential blepharospasm — the proper name for my condition — that you cannot walk and see at the same time, so I used to fall over a lot. People in the street thought me drunk, or were scared of this grimacing woman holding railings and feeling her way by rebounding off street furniture and negotiating by sounds and shadows. Sunlight stunned me into inanition. My eyes could not even be peeled open.
I have been fat before, when I was pregnant. Now I am fat because of many protracted courses of drugs. I walked with a white stick and at one point a Zimmer frame, too, since last autumn I fell downstairs in my blindness, on my way to a hospital, and zigzaggedly broke an ankle, so ended up in another.
In the streets, superstitious fear of disability is matched by a certainty that fat people are stupid, lazy and either deaf or indifferent to offence. Who is nice in the street to the blind or the fat? Black people, people from the Romance languagespeaking countries and the elderly. Some people are bossy. A man in Borough, southeast London, where I had just been to hospital, told me I was using my white stick incorrectly. I’m sure he was right, but I was sad he felt he had to hit me with it to make his point. Schoolteachers of both sexes are kind at railway stations. The disabled lavatories are always locked and quite often the key is lost. Are they there for show?
I missed a train at King’s Cross on account of a “disability outreach operative” leaving me in a holding zone like an unwelcome parcel. The mealy-mouthed words can get to you. Kind but nervy employees of the state or of caring organisations sound horrified if they let out the monosyllable “blind” as opposed to “visually impaired”. Who talks like that face to face? Nobody whose eye you’d choose to meet without winking. I cannot wink any longer, nor wear eye make-up. But I can see, as long as I have eight Botox injections in my amended eyes every three or so months for the rest of my life.
As blepharospasm is a neurological condition. In the past it has resulted in the sufferer being institutionalised. It does not help that more women than men have it. Women are known to be hysterical, especially women of about 50 or more, the age after which blepharospasm is liable to invade the basal ganglia of the brain, which are too deep safely to poke around in and where the fault is thought to originate with the failure of one or another “chemical messenger”, after, it is conjectured, excess pain or stress or fatigue. With it can go grimacing, gurning, tooth-grinding, grunting and other Tourette’s-like symptoms; I had these. Patients may grow anxious, depressed, suicidal or “occupationally disabled”. That means you cannot work; you lose your job.
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I was lucky. I went blind after years of voicelessness as a writer — my last novel came out in 1994 — and I refound my voice while I was blind. My isolation forced me to populate it. After I had become what is defined as “functionally blind”, I was so abuzz with swarming words that I had to let them out. I did so by dictating to a kind young friend what turned out to be my memoir, What to Look for in Winter. I am now writing a novel.
Last spring I wrote of my sight loss in the Scottish Review of Books. I had written the article in the dark by hand. It was as controlled on the surface as I felt desperate within. Words of seeing and of unseeing seemed to be everywhere. I couldn’t sleep, couldn’t cry, couldn’t bear much depth in music. I became dependent on Tolstoy and Proust on CD; started to like Melville, Dickens and Joyce more than I’d known I could.
My desperation conveyed itself to a woman who has blepharospasm and who has done much to help other sufferers. There are not many people, thank goodness, who have it; fewer still who have it severely. She wrote to, then visited, me with her husband. They became admired friends.
They mentioned me to the surgeon who had the imagination to observe and understand the pain and trappedness of those with this condition, and the skill and precise athleticism required for the surgery. In January he made the first cut and prepared my eyelids for suspension by stripping out the disobliging muscle that was locked in spasm. On the last day of June, six months later, to avoid vascular crisis, he dug in again. I was the 15th person to undergo the procedure.
All along, the surgeon has talked hope down. His dry insistence that we expect nothing “miraculous” has enlivened the times of form-filling. When asked to outline the expected benefits of a certain procedure, he scrawled “none”. When asked to project the outcomes of another, he might say, with a lift of his normal eyebrow, “discomfort and scarring”.
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How to thank a person who stops your children’s worry about you? Who gives you back your lost work, your lost world or its vestiges? Like all serious doctors, he is a practitioner of the code that we are pledged as humans to bring no harm upon others. He has that extra faculty to envisage in others a loss that he has not himself sustained. He is therefore a practitioner of rare imagination. He told me once he was not “a word person”; but he feels — or is it hears or sees? — the eye-beams that thread through language and has the talent to bring his vision to bear upon the dark.
Candia McWilliam’s memoir What to Look for in Winter will be published next year by Jonathan Cape