Tell Me When You See My Hands

Own The Equinox Day 7 | Journey Through Hearing and Vision Loss: Living with Usher Syndrome

By Martha Steele

After spending the summer of 1976 in Vermont, I returned to Colombia for another year of teaching. I immediately started to search for roommates for the house that I was living in. Fortunately, two American teachers at the school where I taught needed a place to live and the deal was done. Jan Kaplan, Jane Connet, and I launched our friendship of a lifetime.

Working at the same school, we enjoyed similar daily and vacation schedules, frequently traveling together around the country. The culmination of our year spent together was a stunning trip to the Galapagos islands in August of 1977. We got on a plane in Quito, Ecuador, flew to the islands, and then wandered the wharfs to find a boat that would take us on a tour of the islands. This was a truly amazing trip, forever etched into our memories, to one of the most special places on the earth, with spectacular wildlife interactions and scenery.

But stories about our travels are for another day. This was a year where, with Jan and Jane’s help, my increasingly more narrow peripheral vision came to the forefront of my conscious. Like others before them, they noticed, but did not necessarily think much of it, that I tended to bump into things and sometimes other people. Like my mother years before, they noticed my collisions with objects directly in front of and below my field of vision, suggesting that my field of vision below and above me was more problematic than my side vision.

Still, I was a confident and strong walker to the point that they did not always think to warn me of possible dangers ahead. Both still shake their heads when telling the story of us walking together on a street in Cali, Colombia, where we lived, when I walked into an open and unprotected manhole in the street. They looked on in horror as I dropped down into the hole. As surprised as they were, I was perhaps even more surprised and stunned with suddenly feeling no earth beneath my feet, which had been cruising along. Fortunately, I was not injured and we continued our walk, but they would never again take for granted that I might see something when in fact I did not.

The kitchen in our house was on the first floor, which was largely devoted to a macramé project managed by others. Our living quarters were upstairs, and that was where we ate and where we had a wonderful and large veranda to enjoy our evening drinks overlooking the city of Cali below us and the Andean mountains in the distance. Jan recalls that by the end of the year, we had few dishes left, and many of those had cracks, largely due to the frequent collisions between me and either Jan and Jane coming upstairs with our meals. I had not yet learned to adjust my speed or be more careful in my movements because I had not yet truly absorbed the fact that I had any problem with my vision.

Of course, we loved to kid around with each other and sometimes we teamed up with one of the others at the expense of the third. One such example highlighted in another way the growing signs of my vision loss. I would be seated on the side of the table and they were seated at each end of the table. Jane would start talking, and I would look toward her. Then, Jan would say something, and I would turn my head toward Jan. What I did not know because I could not see was that each was taking a little something off my plate while the other was talking. We had many good laughs at the time about their successful scheme.

On hikes in the Andes, we would sometimes walk a narrow trail with steep drop-offs on either side. While Jan and Jane were well aware of the drop-offs, I would walk along oblivious to them. Although I knew they were there and thus knew to stay on the path, I could not see the abyss on either side and hence I was more comfortable than either Jan or Jane were as we walked along.

The day came where I slammed into one of my roommates one time too many. Jan and Jane, during the many wonderful evenings on our veranda, had periodically tested my peripheral field by moving their hands from the sides toward each other and asking when I started seeing them. But there was one particular day and one particular test that stood out in memory because I
was finally beginning to understand that I had a problem that should be further evaluated. Jan and Jane stood in front of me, and Jan extended her arms wide to her sides, shoulder height. She then asked me to look directly at her face and stay focused there. She was going to bring her arms together in front of her and she wanted me to tell her when I saw her hands out of the corners of my eyes. She was then going to go through the same exercise in a vertical direction, spreading her arms up and down and then bringing them closer from the bottom and top. This was a moment that we realized, wow, I really had pretty narrow field. Imagine holding a beach ball in front of you, and that was about the extent of my visual field at that time.

With this realization and with Jan and Jane’s encouragement, I decided that I would see an ophthalmologist upon my return to the States in the late summer of 1977. But for now, all I knew was that something was not quite right. I was still not worried, not at all. I figured whatever it was, it could be corrected or at the very least, would be just a nuisance, like my poor night vision was. I was looking forward to returning to the United States and re-entering college to complete my undergraduate degree in biology. I just had to get my eyes checked first.

Tomorrow: The Diagnosis

Martha and Alvin at their Vermont Home before Heading Back to Boston

August 29, 2016: 20 Days Until Usher Syndrome Awareness Day
Miles Walked Today: 6 miles, loop around Valley Mountain in Westmore, Vermont; returned to Boston
Miles Walked To Date: 34.5 miles

Martha Steele is a member of the Board of Directors of the Usher Syndrome Coalition, as well as the Board of Directors of the Carroll Center for the Blind in Newton, MA. She also serves as a National Trustee and Boston Chapter president of the Foundation Fighting Blindness.