When you see me in September, you will have to approach and tell me who you are because I will not be able to see you. Back in 1969, of course, I had excellent vision, or at least I thought so. In reality, I was already showing signs of the diagnosis that I would eventually get in 1977: I was going blind from retinitis pigmentosa (RP). It would not be until the late 1980s that I would learn an updated diagnosis: Usher syndrome, a combination of progressive vision loss due to RP and hearing loss.
As many of you know, I was a life-long user of hearing aids and had received specialized speech and hearing therapy as well as training during my first grade year at a special school in Rutland. As to my vision, I had always had more trouble at night than my peers but my pediatrician told me to eat more carrots, which I hated, so I just thought my night vision issue was a minor inconvenience.
But, on one beautiful September day in 1977 while staying at our family’s summer camp on Lake Champlain, my life took a dramatic turn. I had just returned from Colombia, South America, where I had lived and worked for over two years. While there, friends had noticed I tended to bump into a lot of things and were especially alarmed one day when I walked right into an open manhole. My friend performed a simple test of spreading her arms out wide and slowly bringing them towards each other. She asked that I look directly at her face and then let her know when I saw the arms coming in from the sides. When I only saw them directly in front of me, we all realized I did not have much peripheral vision and should see an ophthalmologist.
That visit came in September 1977 after I returned to Burlington following a fabulous trip to the Galapagos Islands to end my time in South America. After a battery of tests and a visual inspection of my retina, the doctor leaned back and bluntly said, “I think you have retinitis pigmentosa; you will be blind in 10 years. I recommend you see a specialist in Boston to confirm this diagnosis. My secretary can give you the referral information on your way out. Have a nice day.” I sat stunned, utterly stunned. Blind? I was going blind? I was in total shock and could not muster even a question. With tears streaming down my face, I picked up the information for the referral and stumbled out to the car. I sat sobbing in the car, just devastated. I was 25 years old on the cusp of a career and a whole life in front of me–and now I was going blind?
The following days were a blur, full of tears. Everything I looked at was a reminder that I would not see it for long. A beautiful sunset, gone in 10 years. My mother’s face, gone in 10 years. Riding a bike from Burlington to the Northeast Kingdom, gone in 10 years. Reading a book, gone in 10 years.
Fortunately we learned more information from the Boston specialist shortly after the initial diagnosis. Although the specialist confirmed the diagnosis, his prognosis for the progression of the disease was very different. RP is generally characterized by a loss of night vision followed by progressively worsening peripheral vision, resulting in tunnel vision. Eventually the central vision would start to decline. The specialist said I would likely have a gradual loss of peripheral vision over many years, with my central vision remaining intact for even longer. I learned I could be legally blind based on how narrow my peripheral field was but that my central vision could still be 20/20. Given that the loss would be gradual, I basically calmed down and just moved forward with my plans to complete my undergraduate work at UVM and go into whatever career I was going to pursue.
By 1983, I was legally blind due to my narrow peripheral field. I compensated by constantly moving my eyes whenever I was walking to make sure I did not walk into things. I voluntarily gave up driving shortly after that, realizing how devastating I would feel if I hurt someone knowing of my vision limitation. . For most of the 1980s and 1990s, the main manifestation of my worsening RP was increasingly narrower vision. It was becoming a little too common to walk into fire hydrants or plastic cones on wet floors and, worse yet, small children who collapsed into a crying hump on the ground after I knocked them over. I got a lot of angry words from parents shouting to watch out. By the early 2000s, I started using a white cane mostly to identify myself as visually impaired so that others could get out of the way–a sort of parting of the Red Sea for the woman walking with a white cane. Now, instead of angry parents yelling at me, I was getting apologies for being in my way.
By 2010, my central vision was experiencing significant declines. I was using special technology to enlarge print and provide more contrast to more easily see words and letters. I was getting training to use the white cane not just for identification but also to help me navigate the world. In 2013, I entered an intensive vocational rehabilitation program in Boston for 16 weeks to learn myriad skills to best cope with vision loss and live as independently as possible.
The years of gradually losing my central vision took my emotional and physical adjustment skills to a new level. It seemed that month by month, there was something I could no longer make out, that I could see just the previous month. Exit signs off highways, traffic lights, street signs, paintings on our walls, faces of people I knew, the color of clothing, my image in a mirror, one by one, everything was disappearing. There was nothing I could do except just keep moving forward, refusing to succumb to despair but instead focus on what I could look forward to, and not back at what I had lost.
I was able to retire in 2015 from my long career in environmental public health on my own terms. That same year, I went to Guiding Eyes for the Blind in New York State and received my first guide dog, Alvin. I became a Board member of the Carroll Center for the Blind where I continue to receive training. I still serve as Boston chapter president and national trustee of the Foundation Fighting Blindness. And I spend a lot of time at my mother’s home in the Northeast Kingdom of Vermont between travel in the U.S. and Europe.
As I started losing my central vision, I also began to experience much greater difficulty understanding speech; I could no longer use lip reading to help me understand what people were saying. Thus, in 2010, I had my first of two cochlear implant surgeries (the second was in 2015) with the goal of improving speech understanding. And indeed, my ability to understand speech after the cochlear implant was astonishing. I had never in my life actually heard most consonants and now I was hearing them all. I could hear the difference between “Chicago” and “chief” for the first time. I had just learned through many years of early speech therapy and experience how to pronounce words I could not fully hear.
One utterly unexpected result of the cochlear implant was that all of a sudden, I could hear bird song for the first time. I am an avid birder, and until that day in 2010, I had only seen but not heard birds. I was stunned by all the bird songs I started hearing; the implant was activated in late April, an optimum time for hearing the spring din of bird songs.
Today, I can hear but no longer can see birds. I have learned to identify about 150 different species of North American birds by their songs or other vocalizations. And there is much more I can and will learn in the coming years. There is little that brings me more joy than standing alone in a forest and hearing beautiful song: a hermit Thrush here, a Winter Wren there, and an Eastern Wood Pewee above me. Like all birders, spring is the zenith of our birding year, with song exploding all around us. There are few places on earth I would rather be in the spring and early summer than the forest and fields around our Vermont home in the Northeast Kingdom.
Constant and gradual vision loss requires constant adjustment, both physical and emotional. It is easy to get alarmed if one day, you realize you no longer see what you saw just a few weeks ago. But I have always maintained that we all face challenges all the time and in reality we are always adjusting to new circumstances, whether good or not so good. It is all of our responsibilities to respond to our challenges as well as we can and try to make the best of whatever circumstances we find ourselves in.
I have had the good fortune to have a strong and supportive circle of family and friends as well as live in a region full of services and training for the blind and visually impaired. I count myself among the lucky ones, and my growing up years in Burlington helped shape who I am today. I so look forward to seeing you all in September. Please, make sure you come up to me and let me know you are there!