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BySusie Steiner

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Published: 00:01 GMT, 14 April 2013 | Updated: 01:24 GMT, 14 April 2013

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Author Susie Steiner has a hereditary condition that is destroying her sight

I can sometimes seem that just when you get the thing you want most in life, something else gets taken away, as if some celestial reckoning is going on. This year, my first novel sold in a publishing auction: a lifelong dream came true. Six months later, I was registered blind at Moorfields Eye Hospital.

I’ve known I was going blind since childhood, when I was diagnosed with retinitis pigmentosa, or RP – a hereditary disease (my mother has it) which is a common cause of blindness in adults. RP causes encroaching tunnel vision, as the rods on the periphery of the retina deteriorate. People with the condition experience the narrowing of their visual fields, so it increasingly feels as if you are looking through toilet-roll tubes. Eventually those circles of sight narrow to pinholes, and then the lights go out altogether, usually by the time sufferers are in their 20s.

I have a milder form of the disease – autosomal dominant RP – which means the deterioration happens more slowly and later in life. Until this year, I had experienced relatively little hardship. Night blindness has meant my husband must lead me to my seat at the cinema or I’m liable to sit in someone’s lap. My two sons, aged six and three, had become accustomed to my losing track of them, adept at waving their arms in the air and shouting, ‘Over here, Mummy,’ in dimly lit bedrooms. It’s a game of sorts for them. Shortly after my latest and most devastating diagnosis, I started to cry in my eldest’s room and said, ‘I’m losing my sight,’ to which he said very sternly, ‘I don’t want to talk about that.’ Quite right, of course.

So this has been known territory – an incremental deterioration. No one who knew me casually would know I was going blind, which allowed me to maintain a kind of haughty denial of the situation. I appeared to be sighted. A bit clumsy on occasion; at times even rude, when I failed to acknowledge someone on the street; a bit uncertain on dark evenings; but not disabled.

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I maintained the same hauteur towards my mother, who at 72 has very little sight and is severely disabled by this. I think I told myself I would never get to that point – I wouldn’t allow it. Scientists would cure me long before I became housebound and unable to read. I now watch the way she struggles even to find the knife beside her plate and feel both immense sympathy and terror at what lies ahead.

‘My right eye is responsible now for all my seeing. It aches with the task’

It seems, at 41, my time – and my sight – is running out faster than I expected although I may, in old age, be left with a little bit of sight, albeit clouded by cataracts and compromised by my thinning and broken-up retina. At my last examination at Moorfields, I was told a hole had formed in my left macula – the central part of my retina. I can feel it, like a floating confusion, the picture all jagged and cut up on the left. My right eye – always the stronger – is now responsible for all my seeing. It aches with the task.

I have a small area of sharp, beautiful vision on the right – my miniature window on the world. What I see through it is so precious – a picture so cherished – that it makes me want to cry. I don’t know how long I will have it for. It is getting smaller.

Immediately after that Moorfields appointment, where I was shown just how diseased my eyes are, I experienced a period of panic – three weeks of crying and sleeplessness – which must have been a form of grief, characterised by intense fears about the future…

I mustn’t have another baby in case I go blind next year. Blind with a newborn and two older children – I’d never manage.

I must have another baby, because I’ll go blind and life must be seized now, lived now.

We’ll never travel, my husband and I, when we retire – that time I’d looked forward to, when the boys are grown and we can see the world again, that will never happen, because I’ll be blind.

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We must travel now, because later I’ll be blind.

We must travel now, but we have two toddlers and travelling is hellish. And already I lose my bearings and can’t manage as well as I used to.

I can’t go camping, or on outdoor holidays with the boys, because I’d stumble in forests and fall off boats. I can’t cycle anywhere (I’d be killed instantly).

I would wake in the morning, open my eyes nervously to see if the picture was still there and feel a kind of precarious relief when it was.

Susie Steiner with her husband Tom and sons George, six, and Ben, three

And then a new landscape began to settle.

I have got more used to the idea of the future as uncertain, that it might be me walking down the street holding the harness of a guide dog. I may lose a great deal of sight in the next ten years but at the same time there is some cause for hope. Moorfields has begun clinical trials for gene and stem-cell therapies to treat retinal diseases such as RP. The research is going at a thrilling speed though the outcomes remain uncertain.

Day to day, I’m managing less well – the world is a more confusing place, my footing increasingly uncertain. I notice how I am less comfortable in strange or crowded environments and the relief of being back at home where I know the landscape. Back in the attic where I write, I can forget that I’m going blind and make up worlds that are interesting and new and often difficult but that I can navigate. It’s a form of travel.

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Sue Townsend, another novelist who has lost her sight, once said what she hated most was being described as ‘brave’. I hate this notion too – the idea of myself as the victim of tragedy.

I still do my best to hide my blindness. My white stick is folded in my desk drawer. I am a person who sets great store by dignity and independence. It’s impossible to be dignified or independent when you stumble and trip. Fall over. Bump into things. Need to take someone’s arm to get down the stairs. These things make you feel weak.

The first time I spoke honestly to someone about it was last September. I met my friend and fellow novelist Harriet Lane at a café in Hampstead. She is also losing her sight to a disease of the optic nerve – hers has been a sudden and shocking blindness, which has coincided with a flowering of her life as a writer.

We must have looked a funny sight; we cried quite a bit. She was trying to assure me I’d be ok but she kept bursting into tears, because in reality,

I think, neither of us knows if we’ll be ok in the end. All we can do is apply for our tax breaks, increase the size of the cursor on our computer screens and hope for a little more time.

The Royal National Institute of Blind People predicts that, because of our ageing population, by 2020 the number of people with sight loss will rise to over 2.25 million. By 2050, it’s likely to be nearer four million. I have little wisdom to offer those facing the same ghastly prospect, except that a sense of one’s own tragedy is of no help at all. If the experiences of last summer have taught me anything, it’s that at some point one must acknowledge the true awfulness of the situation – and also the ordinariness of it.

Susie Steiner’s novel Homecoming is published by Faber & Faber, priced £12.99.

For more information on retina pigmentosa, visit Media

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