Out of the darkness
Saturday March 18, 2006 The Guardian
It was 2000, but it was hard to say when it all began. It didn't start with my seeing wavy lines as I was reading a book, nor did my eyes haemorrhage. Nor did I have impenetrable black spots in front of my eyes. What did happen was, very slowly, it was harder and harder to see the words on my computer, to read my handwriting and impossible to read a book. Every six months or so, I would get new glasses. They helped less and less. The eye doctors I consulted came to the same conclusion: I was diagnosed with macular degeneration. It was age related and referred to as AMD. In laymen's terms, both my retinas were shot. A medical dictionary described it thus: "A loss of central vision in both eyes, produced by pathological changes in the macular lutea and characterised by spots of pigmentation or other abnormalities." I consulted friends and friends of friends. At the time some had heard of it but no one had it. No one but me.
I hasten to explain I am not wholly in the dark. I am partially sighted, low visioned, legally blind - take your choice. Like most people with AMD, I have peripheral vision, that is, I can see out of the corners of my eyes. I can see everything in my flat, albeit in soft focus. Outdoors I can see flowers, trees, the hills, the houses, and the ocean, which all look like the great Impressionist paintings. With age-dimming eyes, Matisse, Monet and Degas painted great canvases. Like a fighting bull I can see red. I can see rainbows.
I see jewellery very well. I see silver and gold. I see pearls, rubies, sapphires, emeralds and any glass reproductions. Babies love the glitter and the gold because they can see it clearly. My former husband, drama critic Ken Tynan, and I took our daughter Tracy, a few months old, to see the star of South Pacific, Mary Martin, whose performances had been glowingly reviewed by Ken. She held Tracy, who began to bite her pearl necklace, and Mary said: "That's right baby, get used to the real thing."
Although I cannot read a book or a newspaper or drive a car or see street signs, I can see people in restaurants. But I cannot read the menu or the bill. At 10 feet away I can see you somewhat in outline, your clothes, your haircut, your height, but I can only see the details of your face at 14 inches, though your face is airbrushed. My mother, her eyes failing in her 90s, sewed brightly coloured pompoms on her scissors, drawers and door handles. I use glittery stickers shaped as stars, apples and smiley faces on notebooks and writing tools.
I think of blind men James Thurber and Aldous Huxley, who each visited Ken and me. At the time I noted the differences in their behaviour. Thurber drank and smoked and had difficulty getting to his ashtray and drinking glass on the coffee table. When he was young, he was shot by his brother in the eye with a BB gun. His good eye stopped working later in life. When we spoke of plays, I noted Thurber would still say "I saw" when he must have meant "I heard". He had a hard time eating out, which he'd react to with anger, sometimes getting into fights at his favourite restaurant. Coincidentally, his wife Helen eventually became blind herself and it is rumoured that they once set their living room on fire. Huxley, on the other hand, did not smoke or drink. He lost his sight through an illness at 16. He seemed to get around more easily with the aid of Laura, his wife, who was most attentive. He told us he and Laura had got married at a Las Vegas drive-in. This caused concern among his intellectual friends who thought it beneath him, to which Huxley would respond: "If it's good enough for Supreme Court Justice Warren's daughter, it's good enough for me." Ah, Huxley, oh Brave New World!
What did they really see? Thurber continued working, on hilarious cartoons and humorous pieces for the New Yorker, and Huxley on his novels.
How much did blind James Joyce and blind Homer, both of Ulysses fame, actually see? Did Homer, who sang in rhyme for remembrance, really see his wine dark sea, his rosy-fingered dawn, his grey-eyed Athena? And for that matter, did Charlotte Brontë's Rochester and Sophocles' Oedipus Rex see anything? Thanks to Ulysses, the Cyclops was blind in only one eye. In the Underworld, the blind seer Tiresias tells Ulysses his fortune. Did blind Milton's blind Samson, eyeless in Gaza, see to tear down the prison house and kill everyone, including himself? I too have felt something like that and I remember the fear that overpowered me upon reading Milton's description of Samson's agony:
O dark, dark, dark, amid the blaze of noon, Irrecoverably dark, total eclipse Without all hope of day!
While I was musing upon all this, I was also doing the rounds of ophthalmologists. In the beginning I had gone to one whom I'll call Doctor First. He had previously removed a cataract from one of my eyes. He said I might have AMD and sent me on my journey. At some point I went to a doctor said to do wondrous things with peripheral vision. I'll call him Dr Salt, because it goes with Dr Pepper. His solution was an unwieldy sort of binocular eyeglasses that sat heavily on the bridge of my nose. He assured me it would develop my peripheral sight. It may have worked for others but it was useless to me. Besides hurting and looking grotesque, I had only fuzzy, distorted vision. However, when I told him I suffered from headaches, he prescribed Dr Pepper, a soft drink high in caffeine. I said I drank lots of coffee. "You sip coffee," he said, "but you slurp Dr Pepper." I began drinking this magic elixir daily. It not only cured my headaches, but also all my aches and pains.
I went to one ophthalmologist after another, all of whom confirmed that I had AMD. I also gathered an ophthalmologist called Dr Eyes was the expert. In December, I arrived at his waiting room, which was crowded with patients. I filled out the forms. And waited. Try that when you can't read the magazines. After two hours my boredom turned to rage and I walked out in blind fury.
The next day I went to the Braille Institute, my last best hope, which I'd resisted because of its reputation for teaching fingertip reading and seeing-eye dogs and I wanted none of that. It was too blind. Sitting in the impressive high-ceilinged hall, an examiner had just given me the test on my eyes, which I failed again. She was talking to me but I was distracted by a blind man with dark glasses walking at some distance from me, his white cane clattering, echoing as it tap tapped away on the floor. What the examiner was repeating - and these are her exact words- was: "There is no cause and no cure for AMD yet." The dam burst. I began to cry, tears running down my face, sudden, unstoppable, embarrassing. In the restroom, I collapsed. My arms were shaking, my fingers stiffened, froze, and then tingled. My stomach was in an uproar. And I kept crying, knowing that I would never go back to seeing what I used to see.
I felt hopeless, defenceless; worst of all, I felt timid. I was crying for my dead self. Up to now I'd been congratulating myself for bearing up so well. Now I realised this was because the ophthalmologists always referred to AMD as a disease. For me it meant there would be a cure. Now I knew there would be no new glasses, no medication, no surgery. All I could think was "It's not fair!" It seemed nothing was offered me but instructions to eat spinach, spinach, spinach, join a support group, look into talking clocks and calendars, large playing cards and large domino sets and of course learn to read Braille. A stubbornness set in. I didn't want any of those things. I just wanted to read and write.
I seem to have spent 2001 visiting places such as the Jules Stein Eye Unit at UCLA and the Center for the Partially Sighted, which showed me the jeweller's loupe, in which I could only see one word at a time. But it wasn't until the summer of 2002 that I decided to make another trip to Dr Eyes. After all, I hadn't actually seen him. This time I came at 8am to beat the crowd. It was still a long wait, but this time spread over three waiting rooms before I got to the great man's office. Then came the eye charts, dilating eye drops, magnifying eye tests, the lot. Same results. Oddly, when help came it was not the great man, but his lowly assistant in the second waiting room, questioning me on my sight difficulties, who was to lead me out of Egypt. She suggested I get an Optelec and when I asked what that was - because it was the first time I'd heard of it - she handed me a pamphlet with a photograph of a man at a desk sitting before a television screen with writing on it. I took the pamphlet home, took a deep breath and shortly after called John Wolfe, the man who distributed this machine. He came to my flat, set it up and showed me how it worked. It was a masterpiece of simple perfection. I have always fought machines, always shied away from them and hated to read their instructions which I didn't understand.
But nothing alerts you like necessity and I was scared not out of my wits but into them. I came to grips with the Optelec in one sitting and on my birthday, on August 2 2002, I was showing it off to my friends.
A 12in x 17in screen is connected to a sliding reading and writing table that moves both horizontally and vertically, allowing you to read and write what then gets reflected on the screen. There is a console attached to the table with a seven-button control panel which adjusts the image on the screen. From right to left the buttons: 1 magnifies the text; 2 makes the print smaller; 3 offers three different views of the page - the regular black print on white background, the second, like a blackboard with black background and white letters, and third, most wonderful of all, the page in colour; 4 adjusts focus 5 provides a pink spotlight to help you find your place; 6 makes the text brighter; 7 makes it dimmer. In my journey into sight I had entered a new epoch. Now I could read and write again.
When I expressed my gratitude, my saviour said he'd just come from a composer who had purchased the Optelec from him, and had burst into tears, saying: "I can now see my compositions." With Optelec, AMD writers can read and write, composers can compose, actors can read their lines in plays, films and TV, playwrights can write them, and photographers can see their photographs. Homemakers can read recipes, angry letterists can write angry letters to the Times. We can all read newspapers and magazines and bills.
In the past years, I have been writing book reviews, essays and articles and doing the research for them. I can proof-read and have done a big rewrite on Virago's Modern Classic reissue of my second novel, The Old Man and Me. It was not all plain sailing. It was a process in which I became aware I would have to start my life anew. Doing things the old way could lead me astray. It involved character building or character rebuilding.
I recognised that some flaws were deeply ingrained in my character way before AMD. For instance, all my life I'd lose or mislay things dear to me: rings, bracelets, earrings. Then and now I also lose the tops of pens, pencils, papers, notebooks and books - all tools of my trade - all the time wasting time. I'd found this significant enough to write an article about it, calling it "Lost and Found". It was a revelation to me what things people lost. A friend of mine lost her purse at her wedding. She thought she didn't need it any more. Subways and tubes were a gold mine of indispensable items lost: not only umbrellas but expensive cameras, wallets, computers, artificial limbs, crutches and false teeth. At Harrods, shoppers use its dog kennel while shopping and then sometimes forget their pets. When they return to pick them up they always get the right one. At the Savoy, safes containing jewellery and money are left unopened. I was not alone in losing things.
There is still an ongoing phone frustration. I have trouble dialling the correct numbers. Often I dial several wrong numbers before I get it right. Of course, the odds are against me. I philosophise: in life there are thousands of ways to get it wrong and only one way to get it right.
Basically what I have to do is change my hasty waste-y, impulsive rushing to judgment and leaping to conclusion ways. I must slow down, find an inner stillness and give up counterproductive tantrums. Still, when I lose things, frustration builds to be followed by tantrums that I know only double the time it takes to find them. I realise my idea of conversation was waiting until you stopped talking so I could start. Now I try to listen to you and respond. I think of what Khushwant Singh said of Natalie Sarraute: "She's everything a woman writer should be: witty, bitchy, quiet, and calm." And I strive to reach this pinnacle.
With these resolutions, I felt prepared for my birthday party last August, which my daughter gave for me. Beforehand, studying the party list, I saw Kevin Thomas's name, a film critic, and Glen Goldman's, a bookstore owner I hadn't seen for a while and didn't think I would recognise. So I asked my daughter to describe them. She said: "Kevin is tall, grey hair, and twinkly eyes. And Glen is short with curly grey hair." I had no trouble identifying them at the party. But then came trouble. When the good-looking young man of 17 or 18 with his hair cut fashionably close to his well-shaped head and his fashionable T-shirt greeted me, I went blank. I decided it was John, a freshman at UCLA, and I introduced him as John. Only it wasn't. It was Matthew, my grandson, whom I had seen two days before. When I was told this, I phoned the next day, mentioning my mistake. Matthew said: "It's OK." But I knew he didn't get it. No one gets it. Sometimes even I don't.
I wanted to read something I'd written to my friend Susan. She said come over and read it to me. I was half-way there when I realised I couldn't read it without my Optelec. Seeing is so embedded in us, people don't get that I can walk around and still not see what they can see.
After this episode I thought OK, so my eyesight is tricky. So it was only common sense to compensate by developing my other senses. I learned the Greeks believed common sense was the soul's link to the other seven senses: animation, feeling, speech, taste, sight, hearing, smelling - the bond that held them together that makes us function with good and practical judgment. Never mind low self-esteem, what I suffered from was low common sense.
Then I got a splendid idea - a game, really. Something to work on until my work became my play. My ears would become my eyes. Unlike Thurber, who talked of plays he'd "seen", I would void all sight words from my vocabulary and substitute hearing words instead. "Out of sight' would become "out of earshot". Do you hear farther than you see or the other way around? "As I saw it" becomes "as I heard it". "I see what you mean" becomes "I hear what you're saying". I found blind Milton helps by glorifying the ear with "More is meant than reaches the ear", "What never yet was heard in tale or song". And "Apt words have the power to suage the tumours of a troubled mind".
Then some funny things happened. Some sight and hearing words became untransferrable - such as "sightseeing" and "oversight". "Earful" won't translate to "eyeful". After all, these are two different senses. "I'm all ears," "In one ear and out the other" - buzz words, sound bites. If I were going to void sight words then I must substitute verbs. I look forward became I anticipate. I'll see to it became I'll deal with it. Verbs such as detect, perceive, uncover were matching with see. I thought these verbs had more definition, more immediacy than the passive "see". President Clinton's famous "I feel your pain" is much better than "I see your pain"; the former more empathetic as it deals with fellow feeling. I look back becomes I remember. As I see it became as I envision it. And with that word I walked right up to Hamlet's "In my mind's eye" and it opened a door for me to walk through. Those of us who become low visioned late in life are lucky. Our mind's eye is filled with remembrance. In my sight-seeing days I stored a lot of memories and I had in fact a good photographic mind, sharp enough to remember a place on a page of a certain book. Photographic images of vision are in my storehouse which I still regularly call upon.
Sweet are the uses of adversity ... I'm working out something positive in tongues and trees, books in running brooks ... sermons in stones and good in everything.
"Time will run back and fetch the age of gold." - Milton
I now observe as well as see, and find that in the Depression glamorous stars were wrapped in luxurious mink, ermine and fox, in coats, stoles and fur-trimmed negligées. A familiar sight around the heroine's shoulders was a pelt held together by the animal's head clasping its tail, its beady eyes silently stealing the scene from the actress's emotional close-up. I use my ears to guide my eyes and call it "hearsee". Watching old movies on TV I often identify the famous voices of actors and in this way identify the actors.
I pay a great deal of attention to things that stand still on TV, such as the assembly-line blondes who appear all the time. Their hair remains still. It looks as if they have all been to the same hairstylist in the same make-up room. It is cut identically to their shoulders, parted off centre, layered, two locks trimmed, gently following their jaw line, heading towards their chin, while the rest of their hair waves outwards. This hairdo appears on women doctors, psychiatrists, lawyers, judges, panelists, female wrestlers, sportscasters, schoolteachers, who face prison sentences for having sex with adolescent students, and housewives who appear also as heroines, criminals, victims, and grieving mothers. In the early afternoon the anchors wear pearls, sparkling lockets and blazing brooches and most of all dangling earrings. A bit dressy for afternoon wear, but fascinating to study.
I concentrate also on backgrounds, with bookcases which stand stiller than everything. Across the wall and up to the ceiling there are, presumably, law volumes, medical volumes and encyclopedias. You could say the world of TV is bookcase mad. I can't read the titles on their spines but neither can my perfectly sighted friends. Actually, every night, they have been trundled out to stand behind authors, disgraced senators, lawyers, pundits, professors, heads of teams of deep-sea divers looking for murdered girls. It gives off the atmosphere of them pausing in their scholarly pursuit to opine on the topic of the day. Do you fall off the bookshelf? One scholar in the library stacks actually pulls out a book and seems to be reading it.
The Braille Institute, which once broke me down, rescued me with a priceless gift of talking books. Priceless as well because they are free and its list is from the Library of Congress, no less. I listen with more absorption, respond more fully to plot lines, to structure and suspenseful moments. My mind's eye envisions what I'm hearing more vividly than if I were reading it in a book. I listen to these books on tape resting on a divan. I listen with earphones in bed at bedtime. I don't have to adjust a lamp on my nightstand, prop up pillows as I do when holding a book in my hand and it doesn't fall down when I fall asleep. I listen to books I would never have read, such as Gulliver's Travels, Samuel Johnson's Rasselas, and The Wind in the Willows, which I never read as a child because it was about animals.
Hearing came well before reading, which didn't get started in general before the 14th-century Gutenberg Bible. Hearing is so much more intimate than reading.
I have said there is no going back. But there is - as I finally remember myself aged four years old, astonishing my parents by my ability to read: actually I couldn't read. What I did was memorise the patterns words made on the labels of our Victrola records, accurately selecting those I most wanted to hear by reading the names of the songs and their vocalists on the labels. Not only the wonderfully funny "Mad Dogs and Englishmen", sung by Noël Coward, which I played all the time and learned by heart, but Coward's doleful "Parisian Pierrot", which I also loved. There was Paul Whiteman's big band with Bing Crosby, the vocalist, and a popular comedian, Eddie Cantor singing "Making Whoopee", which gave me trouble because "whoopee" kept looking all wrong.
And now, some seven decades later, here I am doing the very same thing. I "read" each title of my talking books without the Optelec, just studying the patterns the words make on the spine of the green plastic boxes they come in. Long titles, such as How the Scots Invented the Modern World and The Great Shame and Triumph of the Irish form a different pattern to Herodotus's New Translation. They take a little studying to differentiate. And then there's Ivanhoe which doesn't look like any of them. So suddenly I am bringing it all back home and am relearning to "read" what my four-year-old self mastered by heart long, long ago.
The Dud Avocado by Elaine Dundy is published by Virago Modern Classics. To order a copy for £7.99 with free UK p&p call Guardian book service on 0870 836 0875.