Words in the Darkness: An Interview with Candia McWilliam

With rain crackling steadily against broad windows as a teapot cools before her, Scottish writer Candia McWilliam reflects bluntly on her battle with blepharospasm, the rare eye condition which rendered her functionally blind for over two years. “I don’t think anyone knows where it comes from” she tells me. “It’s a neurological condition very deep in the brain, a dystonia that nobody knows very much about. It’s like having a corkscrew inside your head that’s going round and round, taking your sight with it”. Between 1988 and 1994 McWilliam published three novels including Debatable Land, which won the Guardian Fiction Prize, and served on the judging panel of the 2006 Man Booker Prize. Following the onset of blepharospasm in 2006, she experienced a period of visual impairment that not only irrevocably changed her way of life, but threatened to undermine her relationship with the written word. In a wide-ranging conversation McWilliam tells me about the reality of life with this debilitating condition, the experimental surgery which enabled her to see again, and the experiences which shaped her raw and candid 2010 memoir What to Look for in Winter. In a deeper sense, she also touches on the relationship between her disability and the creativity that has been an integral part of her life and a source of strength in the face of profound adversity.

Blepharospasm is an idiopathic condition which induces severe contractions in the muscles surrounding the eyes, to the extent of forcing the eyelids shut and rendering some people who experience the condition functionally blind. However, McWilliam tells me that “there is nothing at all wrong with my eyes. That is something almost impossible to explain to doctors, unless they are doctors with powerful empathy, and they are like diagnosticians or musicians, they’re just brilliant”. The indeterminate origins of the condition led to much misunderstanding in previous years. McWilliam goes on to tell me that “any suggestion about where it comes from is compromised by the extraordinary fact that because it’s mostly women that have it, until the 1960s it was essentially seen as a made-up illness – it was invented because we all know that women are neurotic and they go a bit mad in the middle of life, so these people who were saying ‘I can’t open my eyes’ were simply hysterical. Some shocking cures were mooted then, and a high number of people with blepharospasm were put away because they were held to be deluded”. Contemporary research has suggested a connection between blepharospasm and other neurological conditions. “It has cousinhood with certain other conditions which lie in the deepest part of your brain – some aspects of Parkinsonism can be dealt with by putting electrodes into the deep brain, however that hasn’t quite worked”.

Following her diagnosis, McWilliam explored many possible cures for blepharospasm, a search complicated by the lack of mainstream medical investment in treating the condition. “After a certain point the NHS can’t go on funding the treatment of esoteric diseases – it’s too expensive. However they’re interested because you’re a guinea pig and they can do experiments on you, which is very Frankensteinian”. A wry smile resting on her mouth, McWilliam sips at her steaming mug and carries on with vigour. “The NHS recognises blepharospasm and the recommended cure is Botox injections in the un-operated eye, which I had and it absolutely didn’t work – there are some who have this condition, and I am one, and it’s so severe that they are untreatable by the NHS. The NHS will only assist people up to a certain level, and after that you’re on your own”. She did find some relief in more unconventional approaches to treating the condition. “Some cures which have been mooted sound cranky; however some of these cranky cures actually do help such as massage, chanting, yoga, mindfulness, acupuncture, anything that can relieve tension really”. Resting her hands on the worn table, McWilliam reflects frankly on the challenges she has faced and their role in the onset of blepharospasm. “It does ride pillion with high tension and high anxiety, and I have no way of knowing that I didn’t assist it in my case by being an alcoholic – I just don’t know if the bits of the brain that are a bit bruised have caused it. Perhaps also being anxious, conscientious and a bit of bad luck have contributed”. The radio plays quietly in the corner of the shop as McWilliam finishes the tea in front of her.

In 2009 McWilliam discovered the Crawford Brow Suspension, an experimental and rare operation which offered the possibility of bringing her out of the darkness of blepharospasm. “The suspension sounds very macabre and disgusting, but it gives you a certain mechanical open-window of the eyes so that when your brain is trying to force them shut you’ve got a bit of the mechanics on your side”. The Crawford Brow Suspension involves removing tendons from the legs and placing them under the forehead as a means by which to hoist the brow upwards and keep the patient’s eyes open. “The operation had only been done around 13 times in the past, and it carried enormous risks” McWilliam tells me. “The man who did this, Dr Foss said ‘you’re going to hate me – I’m going to ruin your looks and put you through pain such as you’ve never known before’. Of course I don’t hate him – I revere him. He did that clever thing of making things sound so bad that they’re a relief when they happen. There’s something very disinfectant about the intelligent truth”. The operation was divided into 2 stages. “The suspension operations are 6 months apart or you’ll have a vascular crisis. During the first operation they remove your eyelids – the saddest thing about that was that I’d never realised that it was fun using eye makeup”. The eyelids are removed to strengthen the area around the eyes in preparation for the second stage of the operation.

The next phase of the operation had significant implications for McWilliam. “During the second operation they take your tendons out from your knees and put them underneath your forehead to prop up your eyelids, and then stitch them in place so they’re like little circumflexes. All this involves a lot of stitching, so it takes a bit of time to heal up, and the thing that really went wrong, and it’s just a condition of modern life, was that I got blood poisoning in my leg from having the tendons in my knees removed”. Despite the challenges she faced during the operation and in its aftermath, the Crawford Brow Suspension successfully counteracted the downward force of her blepharospasm. Nevertheless, the condition has not left her. “Travel brings it back, and so does sunshine – I wear dark glasses even to do the recycling in dark mornings, and I carry a white stick to warn people not to be frightened of me when I lurch. People are superstitiously frightened of those who are different and feel free to say horrible things when they encounter you”. McWilliam benefits from a small number of adaptations. “Prior to my operation an old friend inherited a house which had been adapted for someone of very advanced age, with grabs, bars, and all the stairs were shallow, and I was able to live there”. She tells me that these days “the main, portable adaptation I have is a fold-up white stick. People would get very bossy with me, especially around hospitals, and would stop me to tell me that I was using it wrongly because there’s no area in which people aren’t bossy and experts”. The wry smile that I have come to know in our brief time together returns.

Our coffee shop closes and we move out into the driving rain of an early winter’s evening in Edinburgh. Taking refuge in the raw light of a Chinese restaurant, I ask about the impact of blepharospasm on McWilliam’s writing over soda and still water. “I dictated parts of What to Look for in Winter simply because I was completely and utterly blind, pre-operative and in a very strange place in my life when I was a guinea pig for a number of different cures and disastrous drugs and I was very lucky not to be finished off by them”. Dictating her work was not something that came naturally. “I don’t dictate or work voice recognition software like Dragon Voice Recognition, which has to be trained to recognise your accent and vocabulary, so it’s recommended that you maintain a vocabulary of a certain number of words that become known to it – it’s probably a good discipline, but it’s extraordinarily constraining if you have to think ‘what does the voice recognition software know in terms of words before I choose my next word’”. However, McWilliam sees a connection between the focus of writing and the careful construction that blepharospasm necessitates. “People who are familiar with books often forget that each word is put down, each sentence is made; so while I don’t dictate, I do read every sentence aloud before I publish just to be sure that it falls in the reader’s head in the way that I want it to fall, so that it explains itself to the reader”. She goes on to tell me that “as long as I think I’m writing, I’m writing – the only category difference is getting the words onto the page. It was essential to write – it was important”. Writing has a sustaining power that has provided McWilliam with a crucial outlet from the constraints of blepharospasm.

As our time together draws to a close, I ask about the future. “The condition goes on” she tells me, “it just tightens. It’s the nature of the animal, as life goes on our verve and tenacity lessens as we get older”. Candia McWilliam is far from fatalistic however. While this vibrant woman has experienced the frustrations of being locked in a debilitating battle with her own body, she has nevertheless shown courage and a determination to overcome the challenges that have come with this complex and impenetrable condition. In the self-deprecating way that she has she tells me that “there’s something about an ordeal that causes a steel to enter the soul and you either do or die, and I know that I’d die – I’m fundamentally weak and I don’t have that courage”. However, courage often comes from surviving an ordeal, carrying on, and thriving, and this is what McWilliam has done. Robbed of her sight she completed a memoir that is honest and harrowing, yet inspirational. What’s more, she is still reading, and she is still writing. As we part ways in the cool evening drizzle, I feel sure that this is the greatest testament to her survival and her courage.

Words in the Darkness: An Interview with Candia McWilliam

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