People think that being blind means living in darkness, but it's actually light, a throbbing, empty light, without form; a thumbprint on a lens.
I knew this before we left the UK in 1995 because I had been visiting an eye hospital in Surrey with problems in my left eye. Strange flashing lights and wobbly lines had caused a gap in my central vision. When I closed my right eye, people's features vanished, leaving only hair and ears; the world was full of unfinished Fuzzy Felt faces.
I waited an hour with a hundred others to see a specialist. I had experienced "leakage", the doctor announced, due to a burst blood vessel in my left eye. Why? He shrugged. I was very short-sighted in that eye, not in the other. There was nothing they could do. Could it get worse? He shrugged again.
I was so relieved I didn't have a brain tumour that I left the hospital rejoicing. We could still move to Turkey with my husband's travel company and our small son. There were good medical facilities in the capital. Everything would be fine. Excitedly we packed, cried, said goodbye. Trying to make light of things, I closed my right eye as the plane soared out of Heathrow, pleased to relieve a rather beaky air hostess of her nose.
We spent nine wonderful years in Ankara. I found a good (expensive) optometrist who checked my eyes every six months. We made lots of friends. We had a daughter. I hardly noticed my left eye any more. My brain seemed to fill in the gaps and my right eye compensated. I wore sunglasses and gave up winking.
Ten days before Christmas 2004, I was carrying shopping when I noticed a strange flashing. My heart stopped. I stood still, breathing hard, closing each eye frantically. I realised I was facing my worst fear: it was starting in the other eye.
My optometrist was Eeyore-ish. It was not good, not good at all, he said. I would need tests. Leaving the children with my husband, I lurched around the city by taxi with friends, shuttling from one hospital to another. Everything was fluid and wavy; people, the street, the inside of the cab.
When we finally arrived for the test, I felt hot, sick and shaky. "It is bad," the doctor told me. "You may go blind. You need urgent treatment. PDT."
Photodynamic therapy is a process whereby leaky blood vessels at the back of the eye are cauterised with a thermodynamic laser to stop them bleeding. It was a new treatment, he told me, very risky and very expensive. I decided to go home.
I went to a small hospital in Wales, where I had first been treated. They had only just begun this pioneering new treatment here, too. It isn't painful, the young doctor told me, but it is possible that good cells can be damaged in the process, causing complete loss of sight… In my traumatised state, I thought I was heading for certain blindness, especially when my vision worsened after the operation.
I was transferred back to the eye hospital in Surrey while my husband returned to Turkey to pack up our lives and come home to England for good. I had accepted that I would never work again, never drive, forever read with books at my nose.
But the senior consultant was kind and positive. I needed more PDT and a course of steroids. When I tearfully mentioned blindness, he wagged a refined finger. "We don't use the B word at this hospital," he scolded.
He explained that my condition had only recently been diagnosed as punctate inner choroidopathy, an inflammatory condition where lesions form behind the retina and puncture holes. Blood vessels grow across, but these leak and cause scarring.
"It's very rare," he said. "It would be hard to find 500 people in the world who have it. You had it in your left eye 10 years ago but we can treat your right eye now. Eventually the blood and mucus will dry up and your vision will improve again."
I didn't believe him.
Five years on, I am working, driving, reading. My eyesight is pre-Christmas 2004. My symptoms have reduced gradually and the wonderful staff are talking of discharging me. I still get slight inflammation every month (it's hormonal), but it's hardly noticeable these days. I feel blessed.
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