Losing Sight, Gaining Skills: a Doctor's Odyssey

by Stanley Wainapel, M.D., M.P.H.

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Dr. Stanley Wainapel

���������� From the Editor: On Friday Afternoon, July 6, Dr. Stanley Wainapel, Director of the Department of Rehabilitation Medicine at Montefiore Medical Center in the Bronx, addressed the 2001 convention of the National Federation of the Blind. Steve Marriott had just spoken, and Erik Weihenmayer was to follow. Together the three men provided an inspiring and exciting experience for everyone in the room. This is what Dr. Wainapel said:

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����������� It's a great honor and also a little intimidating to be speaking this afternoon because I sort of feel that I am sandwiched between a Marriott and a mountaineer. But I am very happy to have the opportunity to speak with you and to express the great appreciation that I have for what the NFB has done for me. I am a rather young Federationist, maybe not in my own personal years, but I am young in terms of my involvement in the organization. When I came to my first meeting in 1994, it was truly a life-transforming moment for me, and I want to tell you a little bit about that.

����������� When I was an eight-year-old child and was diagnosed with a progressive degenerative retina disorder, any hopes that my physician father and nurse mother had for my following the family tradition in becoming a physician died. I think that the concept that I might some day go on to be a doctor, despite a vision loss, was probably as remote to them as the summit of Mount Everest.

����������� Fortunately that wasn't the case. I had a number of fortunate circumstances, and also I had some good choices that I made that perhaps made negotiating the challenges of initially becoming a doctor less daunting than they might have been. To start with, I cannot imagine the number of you out in the audience who can tell horror stories about your ophthalmologists. I strangely enough can only tell you love stories. That's not very common. I will tell you to start with that, when I was a teenager, it was an ophthalmologist who said to my parents, "Your son will be able to go to medical school. He will be able to be a doctor." That was a man with vision.

����������� Fortunately my disease was also very cooperative about this, and it was rather slow in progressing. I also had the help of some guardian angels. To start with, my wonderful wife Wendy, who for more than twenty-one years has believed in me many times when I didn't believe in myself, and whose love has sustained me through many, many a dark day. I also had the other benefit of having employers who basically wanted me as an employee. It was perhaps not the common experience of people who are blind or who are losing their vision actually to have a person who wants you to stay there and will work through anything they can to accommodate you.

����������� A great rehabilitation medicine physician by the name of Howard Russ, one of the fathers of the field, came from the state of Missouri. He said that he never failed to rehabilitate people if they met at least one of two criteria: they had someone who wanted them to work, and somebody loved them. I was lucky; I had both.

����������� So, if you fast forward to about 1990, at that point I should have really been considered to be at the summit of my career. I was in a high-paying, high-prestige position. I was highly respected professionally. I was widely published, so you would have thought that I had everything, and I guess I did on the outside. But other things were happening on the inside. Now, I am sure that Erik Weihenmayer will be able to tell you a lot about what happens when you climb in the Himalayas. One of the great hazards is altitude sickness.

����������� When you start climbing high in the ranks of the professions, one of the problems can also be attitude sickness. Usually the attitude sickness comes from others: the negative attitudes and stereotypes towards blindness that all of you know very well. Actually, there is another form of attitude sickness, and that's one that comes from within. That's what infected me. At a time when no one else doubted my capacity to continue to be a highly productive physician in spite of my significant vision impairment and progressively deteriorating vision, I didn't really think that I could do it. So I made a really colossal mistake, which fortunately wasn't a fatal one. I chickened out. I basically left my high-paying, high-prestige, respected job, and I took a job, a respectable job, in a respected agency for the blind as their medical director. There was nothing wrong with the job. There was everything wrong with the reasons I took it.

����������� During the time I was in that job, I found myself feeling increasingly disconnected from the world of academic medicine of which I had been a part and to which I had contributed. So we will fast forward again to 1994 when, very ill in body, mind, and spirit, I showed up in Detroit, Michigan, at the NFB Convention. Part of the reason I was there was another guardian angel. Her name is Adrienne Asch. She is from Massachusetts. Now strangely enough, even though I think part of the reason I was becoming prominent in my specialty of rehabilitation medicine was because I had special expertise in issues of vision impairment and wrote about it and talked about it, I realized that, other than someone like Adrienne Asch, I probably could count all the blind people I knew on the fingers of one hand. That was a very strange thing. You can imagine the shock to my system of walking into the lobby in Detroit. It was a mind-blowing and mind-opening experience for me.

����������� At that point my vision had probably deteriorated by half over the course of three years. I was physically ill with a gastrointestinal problem. I was ill with lack of confidence in myself, and, thank God, Adrienne had told me, "Go to the NFB; they'll show you what to do." And you bet they did.

����������� As a matter of fact, I came, I saw, I was conquered. I came, I saw, and as a matter of fact, I was infected. I came down with another disease that sort of counteracted my attitude sickness. I think that disease is called Federationitis. That disease has a number of interesting symptoms; it's characterized by boldness, determination, enthusiasm, energy, optimism, and an irresistible urge to say, "Heck, I can do that."

����������� I had had a little bit of mobility training, but of course I hadn't had any mobility training from a blind person before, so I found out that logical positivism wasn't necessarily the right way of getting mobility training. I got lessons in mobility, in nobility, and humility in the process. I think I learned more in those five days than I had in five or more years of time before.

����������� Now let me tell you some of the long-term effects of Federationitis--actually, not so long-term. Within six months of the time that I was at the NFB convention, I had bought a computer with all the appropriate bells and whistles. I had taken computer training, and I had been offered and had started a job as a clinical director in the program where I now serve. I haven't looked back since that time. I have had to look forward a bit more, because I have had a lot more mobility work to do. There is much that I continue to learn from the Federation, that I know I will continue to learn from the Federation, but it really changed my life forever. That just shows you what one meeting can do for you.

����������� Part of the reason this is only my second meeting is that, when you are an academic physician, around July first all the new resident physicians in training come on board, so I advise you very strongly, do not become ill in the beginning of July. That's part of the reason that I tended to stay around to make sure that things happened well, so it was rather difficult to come to the meetings. It was an extra treat to be able to come to this meeting and to be able to tell you about what this organization has meant to me and what it will continue to mean to me.

����������� I think the greatest speech that I ever heard in my lifetime was made by Martin Luther King. Of course it was the speech which was punctuated by "I have a dream." I think that NFB tells us and teaches us how to dare to dream. I too have my dreams and my visions of what I would like to see in the future. In my vision the white coat and the white cane together will not cause people to do a double take. In my vision the fact that I am up here as a blind physician and that I have been on the "Today Show" as a blind physician will be no big deal, that I will not be thought of as a blind physician, but as a physician who happens to be blind. That the acuity of my thought will be considered more important than my visual acuity. That for all people it will become clear that what's important is what's behind the eye sockets and not what's in them. And that everyone will live by one of the things that I have tried to live by through my whole life. This is something found in a children's book written by a French aviator, Antoine de St. Exupery, The Little Prince--many of you have read it. In that book it says, "What is essential is invisible to the eye; it is only with the heart that one sees truly." I think the NFB has helped to open my eyes, open my mind, and open my heart.

����������� I also realized that, by becoming a Federationist, I basically had enlisted in the Army, and that particular army has its own motto. I think it's a wonderful one. I happen to remember the original Army motto, which was to be all that you can be. I can tell you that NFB has helped me to be all that I can be, and all of you to be all that you can be.