McDonald (Don) Curran – UNITED KINGDOM

Immediate Past Chairman AMD Alliance International

EYES WIDE OPEN : a story of dawn in the dark of night
By Patrick Tudoret

It began in 1999. D. was sixty-one, at the peak of a brilliant career, the Vice President of United Airlines for Asia. He lived in Hong Kong, and played golf every weekend at Shek-O, a club well known to the local aficionados. One Saturday, his friend Brian, as nearsighted as he was, seemed to have suddenly developed an eagle's eye; he could see and distinguish their golf balls at a distance of more than two hundred yards. There had been a miracle; he had had a laser treatment. D. was impressed. He thought the fountain of youth would run like a waterfall at the mere falling of his glasses into the wastebasket, and when he later investigated, he was told that an operation that took minutes would suffice to give him perfect vision, or at least improve it considerably. But being a careful kind of guy, he got a second opinion, a third, and a fourth. On the 22nd of April, unanimously reassured, he was operated on by Dr. L., a reputed Chinese specialist.

When he awoke from the operation, he was in heaven. From his home high on the Peak, he could see to the farthest horizon, from Aberdeen to the green spine of the outlying islands. This explosion of landscapes made him so happy he felt like a new human being. But it lasted only two weeks. His right eye began to see things hazily, then there was a distortion, then a blinding glare. His physician gave him explanations, but he remained very worried. He went to consult an American doctor practicing in Birmingham, Alabama, whose diagnosis destroyed every trace of his brief exuberance: "wet" macular degeneration. He would lose virtually his entire visual acuity; nothing would remain but peripheral vision, which meant he would not be able to perform such fundamental tasks as reading, writing, or driving. In an attempt to slow the condition in the left eye, another laser operation was performed, but to no effect.

Questions tumbled over each other. Had it been the laser operation that had caused this condition? Probably not. It was however certain that it had accelerated its development by five or maybe even ten years. Statistical data tend to indicate that this type of operation should be limited to patients aged fifty at the most. D's priority became the conservation of a normal life for as long as possible, but in spite of his ferocious determination not to give in, depression gradually overtook him, along with intense pain in his stomach and chest. The only relief came from long walks every morning around the Peak, and of course every morning he was aware of how much less he was seeing, and growing more and more panicky. His two weeks of glittering visual contentment had ended by plunging him into an absurd - but real - world in which he could no longer see the faces of those he loved, in which he was becoming more and more despondent. A German psychiatrist recommended by a friend prescribed antidepressants, and D. became virtually comatose. When he consulted Dr. L, he was quickly shown the door. Operations that cost $4000 US must not suffer this kind of negative publicity.

Depression led to suicidal obsessions, and in the depths of these sufferings, D. decided to write his own "Ten Commandments" for life - and they were nothing less than those closest to him: his wife, his children, and his grandchildren. His lethargy moved his wife to action. She insisted he go to Chicago's Northwestern Hospital, where three doctors gave him the understanding and competent counsel that he needed. His return to the land of the living actually began when United Airlines took the initiative and gave him early retirement. He would have to get used to it. The "sighted" world can be irrationally ill at ease when confronted with the unsighted, as if their handicap had somehow affected their intellectual capacities. In any case, the handshake was negotiated, and D. would effectively leave the company at the end of the year.

By that time, his decision was made: a return to the land of his birth - Scotland - seemed the way to to adapt to this new life, to focus the force around him that was his family. It was time to assess the situation: D. had become legally blind in the space of four months; gradually he had learned to deal with the depression that had crushed him; he was condemned without appeal to the loss of his professional life; by his own volition he had decided to have the laser operation, and there was no one else to blame; and last, his inability to see embarrassed those around him, and they treated him as if he were mentally defective. He determined to adapt to this new reality. He would no longer be able to distinguish colors, to enjoy the scenes of daily life, to read people's body language, which was such an important element in communicating with them, to see what he was eating. Thousands of things that are taken for granted were taken, period, and the enjoyment they lent to life would be taken, too.

It took D. more than a year to return to "normal" life. His determination began to be restored around the beginning of 2000, and with a courage that has never failed her, his wife took on the move to Ayr, Scotland. What her husband needed now was a reason for living, for restating his commitment to life. The first step in this 'rebirth' was the stabilization of his illness in February 2000; the second was the assimilation of new techniques of communication, particularly email and voice recognition, which allowed him to connect with others again. Long walks on the beach, accompanied by the voice of Andrea Bocelli, and the unconditional support of his family did the rest. Life began to seem livable again, and as he relearned elementary things like taking a bus or train, eating in a restaurant, it began to seem as if a new dimension had been added to it. His introversion, his implacable solitude, his self-pity, so valid and legitimate at the outset, would never again feel appropriate. A Scottish practitioner's therapy made three problems clear: this unacceptable handicap would have to be accepted; retirement, and the sense of futility and social uselessness that accompanies it, especially for a person who has been in a fairly powerful position, would have to be adapted to. And third, had he not forgotten during all his trials that his wife was suffering as well? Had she not seen the world she lived in shaken to its foundations? And had she not been uncomplaining and courageous throughout?

This long year of self-improvement and survival had pointed up one basic truth: there is no medical assistance to the blind, once the diagnosis is established. Any other physical handicap is followed up. D., who was financially secure, was conscious of how privileged and favored he was: he imagined the suffering of those who had no support structures, who were cut off by their inability to see from any link to the world, and condemned to a hopeless and vegetative existence.

And yet, a life of dignity, happy and productive, is possible if you have the means to achieve it. Medical research has a lot to contribute, of course, but other rows must be hoed as well, such as psychological supervision and technical apparatuses developed for the unsighted. And information must be much better disseminated, so that any person who finds her- or himself in such a traumatic circumstance knows in advance what the effects of the illness will be, and is able to face it with dignity. When he speaks of his own case, D. always mentions how lucky he was. His encounter with the Rosenberg Group not only enables him to bring his experience to the development of companies and of the men and women who constitute them, it has also allows him to pursue his 'internal dialogue,' as he likes to call it, and to exercise his capacity of choice, each day, of the world in which he wants to live. Constantly aware of the need to assist those in similar circumstances, he joined the Council of the Macular Disease Society and became Vice-Chairman, and boosted a whole new dimension of activity which promotes medical research, as well as the development of technical aids and the psychological assistance that is so vital to patients.

If D.tells you with a radiant smile that his life is happier in many respects than it was before, make no mistake. It goes without saying that nothing can replace so essential a sense as that of sight. And yet, as D. demonstrates and confirms each day, there are "compensations." Never before was his ability to learn, and to reflect on his life so keen; never has he coordinated so fully the echoes of philosophy, history, or music, for example. A rich intellectual life has opened up new horizons, a new way of understanding the world. The age-old stress, the old insistence on immediate success, are things of the past. What counts for him today are his ability to help others and his newfound capacity for happiness.

So at this point, what is his dearest wish? That proper, useful information be diffused to persons suffering from this disease, to help them recognize the symptoms and developments. It was in a plane, when he was reading his last book, his sight fading from one hour to the next, that D. understood what he would have to face. Yet there are audio instruments, and they are easy to use. What a quantity of depression and suffering could be saved by the availability of an appropriate supervision as the disease develops, and a few simple technical devices.

Hallucinations frequently occur, especially on awakening, at the early stages. The head of a bear fading into one's "line of vision" - or the map of Africa, or a sheet of endless rain, can have a devastating effect on a person who is unprepared for them. Yet it would be so simple to inform people. Isn't it criminal to leave people in despair when the medical community has easily the means to let them know what is happening to them? In the ever-lengthening life expectancy of our modern world, in which visual techniques make ever greater demands on our eyes, eye diseases such as macular degeneration will occur more and more frequently. It is essential to know in advance how they manifest themselves, how they develop, and what can be done about them, and to help people who become their victims. We could well be called upon.

A writer, a journalist and a researcher, Patrick Tudoret contributes to several publications. He has also written three novels published by Editions de la Table Ronde.

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