There is no question that AIDS is a cruel disease, a cruelty I saw manifested daily in infinite permutations of symptoms, uncertainties, frustrations, social complications, and seeming hopelessness. And always the cruelest and most feared of the opportunistic infections were those leading to blindness.
The most common of these was CMV (Cytomegalovirus) although there were others. In any case the early symptoms were usually tell-tale signs like floaters in the eye. The medication was harsh in the early days, involving dragging an IV pole around for hours each day. But, however much the treatments postponed the onset of blindness, the vision slowly diminished until it was gone completely.
And at that point there was no reversal. Over time there were improvements in general HIV therapies, and in treatments for the various opportunistic infections. But those who went blind were generally blind for what remained of their lives. And that was the final irony of timing when the new therapies came along. For many of these people the new treatments improved their condition to the point where they felt vigorous and healthy enough even to resume work. But they were still blind – and always would be.
For some it was a crushing blow, but others rose to the challenge magnificently. The first blind client I ever saw, Phillip in Pasadena, lived alone in a very comfortable apartment and told me confidently that there was nothing a sighted person could do that could not be done by a blind person. My skepticism abated somewhat when he told me he had just returned from the mountains – from a skiing trip. This optimistic view of life was to be repeated frequently, along with tales that were sometimes sad but, much more often, made me laugh.
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