First personDisability This article is more than 16 years oldMy years in the dark
This article is more than 16 years oldDoctors terrified her, strangers robbed her and friends failed her. Penny Anderson has many unpleasant and embarrassing memories of her temporary blindness. But there were some funny moments too ...On my birthday five years ago, I woke up with blurred, milky vision in my right eye, and totally blind in my left. Numb with shock, I ignored the situation, enjoying tea as arranged at a classy hotel where I could only see the person seated to my right. A mate had treated me to tickets to see the White Stripes that evening; throughout the gig I could see Jack White on the right of the stage, but not Meg White on the left. I convinced myself it was glaucoma, endemic in my family but treatable, before beginning to speculate that it might be a brain tumour.
Eventually, after five days of worry, I went to the local eye hospital. The examining doctor asked how many fingers he was holding up, but the man himself was just a dark, formless blob. He tried to reassure me, claiming unconvincingly that he saw this - as yet unnamed - condition all the time, but his blusteringly confident manner betrayed the fact that he was as scared as me.
With alarming haste, I was referred to a neurologist, who tentatively diagnosed a condition called optic neuritis, which is often, although not exclusively, a harbinger of multiple sclerosis. I had never heard of ON before, but later learned that it is also linked with viral diseases, including measles. Afflicting mostly adults between the ages of 18 and 45, it is an auto-immune illness in which the body's own defences attack the myelin sheath protecting the optic nerve. The RNIB estimates that it hits roughly 1 in 100,000 of the population every year - about 600 people.
The effects vary, and are usually described as temporarily blurred vision, accompanied by blind spots with colours appearing faded and washed out. Most sufferers are affected in one eye only. Generally, mild cases clear up within six to eight weeks, so treatment literally involves a wait-and-see approach. For rare persistent cases there is no cure. Glasses or eye exercises do not help, but steroids may speed up recovery, although opinion varies on their efficacy.
I suffered an atypically severe attack, which affected both eyes and lasted almost five years. In the first few weeks, I had no colour vision at all except for an impression of medium, dark and light in a misty sepia world. Red vanished first, rendering blood invisible. I couldn't see when my period started, and I was confronted at the gym by a horrified woman informing me that I'd cut my leg shaving. On the plus side, blue remained and was supernaturally vibrant: I once stood enraptured by the shimmering azure beauty of a passing bus.
The quality of my vision varied on a daily, if not hourly, basis. I would set my alarm for 4am to read newspaper headlines - the only time my eyes were up to the task. Specialists explained my situation would get worse before it got better, so I sat tight watching my eyesight fade, being assured that total blindness would last for only (only!) four to six weeks. It was as if the infamous looming fog of doom in The Hound of the Baskervilles was real and creeping closer, until it took up residence inside my eyes for three months.
As I had previously been blessed with perfect vision, coping with blindness was perhaps easier for me than for others. I knew where buildings and objects had been, although I still had to relearn my route. Lacking the kind of wandering stare seen in David Blunkett, for example, I didn't really look blind enough and I received help more readily when I wore sunglasses to repel painful glare. (In Glasgow, where I lived, a passing wit shouted: "That girl's pure Roy Orbison.")
But the difficult part was obtaining a definitive diagnosis and treatment. The hospital seemed in no great hurry to do anything, and indeed sent me badly printed letters I couldn't read. I saw several specialists, and endured many blood tests. Mercifully, an MRI scan showed none of the white brain lesions diagnostic of MS, and a veteran specialist bet his pension that I didn't have that terrible disease. Another neurologist stated bluntly that my eyes would be permanently damaged, as is occasionally the case. My GP seemed almost offended that I had referred myself directly to the eye hospital, and ordered me to search the internet for information (which I couldn't see).
Even reaching the hospital required a battle with public transport, providing a salutary reminder of society's attitude to disability. Whenever I asked a blurred shape for help, the blur would slope away, and once it took two Malaysian tourists to tell me when the tram had stopped. When I approached rail staff for assistance, explaining that I was blind, they would silently point the way, until I remarked that I couldn't see what they were pointing at.
I lived alone, and found that friends didn't quite understand that I needed practical help, such as moving things around my flat so I didn't fall, and a hand with cleaning. Unfortunately, I'd say the experience shaved down my social circle by around two-thirds. One now former mate offered me presents - wine and flowers - but balked at providing assistance. Other friends were saints, but even though they were supportive (they endured my tears, and visited), I usually ended up struggling to shop alone. Sean, my lovely hairdresser, gave me free haircuts, and others recognised the importance of music and bought me CDs, or took me out for dinner.
I tried to keep going. Once I dropped the money I was tendering in a shop and explained I was blind, only to realise that someone behind me in the queue was pocketing my cash. I relied on staff in shops, on buses and in bars to take money from my purse, trusting their honesty. Occasionally, I found myself short of the odd fiver. Cooking was dangerous - saucepans boiled dry and food was raw or burned - so I radically changed my diet, eating far too many sandwiches. I couldn't clean the flat, and the help promised by the hospital never materialised. One night I panicked when stumbling around looking for my ringing phone, and - weeping with fear and frustration - accidentally stood on all my beloved Mogwai CDs. One friend persisted in texting me late at night, despite being advised that I couldn't see the phone, my hand or anything at all by that point.
Daily life was full of embarrassments. One day, I went to stroke a cat on a shop counter; in reality it was a 50s-style phone. Acquaintances accused me of blanking them on the street. The stark black marble benches on Glasgow's Buchanan Street were invisible to me. I had no perception of transparent materials, and frequently found myself stuck to shop doors like a Garfield toy.
Once, waiting in a bar for a friend who was always late, I heard a man say: "I'd never normally do this, but I think we shared a special moment when our eyes met back there." To our mutual mortification, I explained my predicament.
Blindness compelled me to change every aspect of my life. I adapted my gait, picking up my feet in an exaggerated moon-stomp, as I couldn't see cracks in the pavement and frequently tripped. My own face in the mirror proved elusive: one day a friend tactfully pointed out that I had a huge spot on my chin.
After a struggle, I was finally admitted to hospital over three days for intravenous steroids, but by then the total blindness was already lifting. The myelin sheath around my optic nerve has now repaired itself, leaving some residual damage. Sensing motion and depth is still a problem. Speeding cars suddenly appear, as my brain hasn't processed them. My vision is extremely blurred following a hot bath or exercise, owing to an associated condition called Uhthoff's phenomenon. I am unlearning my compensatory tricks, like that moonwalk, and I make eye contact once more, so as not to look shifty.
My vision is mostly reasonable but, in common with most people who have had ON, nothing looks quite right. It's as if I perceive the world through someone else's vision, and I will never trust my own eyes again. I was warned that a relapse is possible. The other day, I gazed at my face in the bathroom, but everything was blurred and hazy. Then I realised, "I'm going to have to clean that mirror".
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