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One of Scotland’s most celebrated writers, Candia McWilliam, has documented how she is losing her sight to blepharospasm, a condition that affects the eyelids and prevents the brain from opening them.  She says “If I am for the dark I must catch the light in words. I am living in the country of the all-but blind. I’m a newish resident. But not quite acclimatised, wobbly.”

Ms McWilliam, whose novel Debatable Land won the Guardian Fiction Prize in 1994 as well as the Italian Premio Grinzane Cavour for the best foreign novel of the year, says that she first became aware of her affliction in 2006.  Since she was also a judge for the Man Booker Prize, she found the process of reading a painful ordeal. On a rail trip south from Edinburgh, she realised that she was struggling to see. “For example I was continually grimacing and grinning as though I had Tourette’s Syndrome; I was reaching for sight I know now like a cat trying to be sick, in spasm.”

In 2007 she attended the Edinburgh Book Festival, walking slowly onto the stage, holding a white cane. She announced that she was writing a memoir.  The doctor who diagnosed her condition described it to her by saying: “Your eyes are fine, but your brain won’t open them.” She has attempted using a pair of spectacles with in-built wire matchsticks to prop up her eyelids, but has found them difficult and painful to use.

Ms McWilliam’s children and husband have persuaded her to move from her home in Oxford to London - “the city I have long superstitiously feared, like the type of provincial Scot I am” - so that she be closer to the doctors who are treating her. “For years I had thought that, when the last child was fledged, I would come home to the North,” she says, “but now, just for now, I am following my annulled eyes and the people who are looking into the brain that has closed them down.”

Finding no difference between light and dark, she finds it easier to write at night. “I tend to measure time now by whether it offers a moment or promise of a moment of some kind if sight. I can see a bit after a long period of sleep, so that, for example, I am writing this in bed, pressing on a board with pen and paper, in the complete dark, at one in the morning, a juncture when an hour or so of blurry seeing may arrive for me. I cannot see my words as they appear on paper. Tomorrow I shall unknot them for you.”

Various attempts to reverse the process have been made, but without success. “The word used by doctors is ‘functionally blind’” she writes.
Ms McWilliam has bought an RNIB folding stick, and tried injections of botulinum in an attempt to stimulate (sic) her eyelid muscles without success. “I am blind, but there is nothing wrong with my eyes; it is a function of the deep brain, what tough boys call the reptile brain ... Either way you don’t want to stick a spirtle in there, and I have long had a fear of knives.”

Deprived of the ability to read, she has been listening to talking books. “They are as different from the ‘reading experience’ as can be,” she says. “I can’t scribble in the margins, I hardly take notes (I fall over when looking for the pen, paper etc).” However, she has managed to re-read Dickens, Trollope and Proust. Ms McWilliam continues to hope that there will be occasional moments when she can see - describing her present condition as like walking through the city of Venice.

“If I keep going carefully through the narrow, dark, unencouraging alleyways alone, I may come upon an open square, a metal chair, a small table, a cup of bitter coffee, a glass of water and that thing I long to hold, to touch, to open, to enter fully again, a book whose pages may once more collaborate with the reticulations of my brain, and together, through my re-employed eyes, make something, book and - is it? soul ...”

From an article in The Times
May 11, 2008

I am currently conducting a literature review of studies that have investigated the emotional support needs of adults and older people with sight loss. Please contact me if you are aware of any reports in the ‘grey literature’ that would not be found from searching a database of academic journals.

I am looking for two types of reports:

1) those that present data from interviews, focus groups, surveys, etc. that highlight the emotional support needs of people with sight loss; and
2) reports that present data on an evaluation of a service for people with sight loss, if the evaluation concerns impact on quality of life/emotional well-being.

I will include both qualitative and quantitative reports from 2001 until present/in press.

Any help with this will be much appreciated.

Dr Samuel Nyman
Research Associate
Institute of Health Sciences
University of Reading
London Road
Reading
RG1 5AQ
Tel: 0118 378 6864
Mob: 0751 518 7884
Fax: 0118 378 6862
Email:

Dr Alexis Brook was the guiding light behind the resurgence of psychosomatic ophthalmology in the 1990s leading to the development of the Minds’ Eye conferences, the Mind’s Eye Clinic, and the Eye and The Mind Society.  It is with great sadness that we learnt of Alexis’ death in August 2007.

Alexis was born in London to Russian parents who had emigrated to this country for political reasons. He was the eldest of two eminent sons, his younger brother being the acclaimed theatre director Peter Brook.

Quite early in life Alexis decided to become a doctor.  He studied at Cambridge and received his clinical training at the Middlesex Hospital.  After a brief houseman’s appointment Alexis was called up to the RAMC and served in India, Burma and French Indochina.  It was whilst he was in Burma that an experience determined his choice of psychiatry as a career.  Briefly he found that if the morale of the troops was high the illness rate was low.  From then on his life’s work was focused on the interaction between psyche and soma.

Alexis then trained as a psychiatrist at the Maudsley Hospital in south-east London and the Napsbury hospital near St Albans.  He was appointed to the Cassell hospital in Richmond, Surrey, where he became consultant psychiatrist and this led him to specialise in psychoanalytic psychotherapy.  He then obtained a consultant post at the Tavistock Clinic.  Whilst at the Cassell Hospital he ran Balint type seminars for GPs.  As he described it himself he “crossed the boundary…from hospital to general practice” and took the unheard of step for a consultant psychiatrist and psychotherapist in sitting in with a GP each week during surgery hours.  This novel idea proved to be of great benefit, demonstrating the contribution psychotherapy might make to other medical and health professionals’ areas of work, as we in the eye professions were to discover to our lasting advantage.  Now in the 21st century about half the psychiatrists in the country spend some time working in general practices.

At the Tavistock Alexis ran seminars for occupational health physicians, working to identify stressors affecting individuals in organisations.  He was a member of a working party that made recommendations to the Robens Committee of Health and Safety at Work urging them to make recommendations about mental aspects of health and safety at work.  Alas these recommendations were ignored.  Those of us who currently work in the NHS may rue the day that this commendable suggestion was overlooked.

After his retirement from the NHS in 1985 Alexis became an honorary consultant psychotherapist at St Mark’s Hospital, Harrow, showing the contribution a psychotherapist could make to dealing with disorders of the gut.

And in 1992 Alexis initiated a project in psychosomatic ophthalmology at the invitation of The Council of the British Psychoanalytical Society.  This was funded by The Inman Fund.  William Inman was unusually both a psychoanalyst and an ophthalmologist.  Alexis worked initially in Inman’s old hospital, the Queen Alexandra in Portsmouth, and later in Dr Sotiris Zalidis’ general practice in Hackney seeing patients where no physical basis could be found to explain their eye disorders. Alexis found emotional difficulties of varying degree in 80% of these patients, and that a psychotherapeutic intervention could make a significant difference to their treatment.  A common theme was unresolved grief.

For myself as an Orthoptist working mainly with children I had so often in the eye clinic encountered patients with visual difficulties that could not be understood by the usual clinical procedures open to us in the eye clinic.  I will never forget my delight and even relief when in 1995 a notice dropped through my letterbox with an invitation to attend a series of research seminars at the Tavistock Clinic on ‘Psychological Aspects of Eye Disorders’.  It was as manna from heaven.  Discourse of a psychological kind was not the general currency in eye clinics, and referral to colleagues in psychological medicine a path not yet generally travelled, unlike say to neurology. 

And so these two series of on-going research seminars led by Alexis Brook and his two general practitioner colleagues in the Balint tradition, Andrew Elder and Sotiris Zalidis, helped to open the door to eye professionals in thinking about the meaning of their patients’ visual disorders.  These ground-breaking multi-disciplinary seminars paved the way for the creation of the Mind’s Eye series of conferences, the Mind’s Eye Clinic and to the Eye and The Mind Society. 

As a person Alexis was unfailingly kind, gentle and courteous. I was fortunate to have the benefit of his time and thinking when I had queries in my own dissertation into psychological aspects of eye disorders, and I will always be grateful to him for his generosity and supportive help.

Liz Middleton

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