Losing My Island

This is number 10 in the series Vision: A Journey

Why I Was So Driven

I want to begin by sharing some of my reflections as I look back at the early years of my vision loss. In particular, I’ve pondered why I was so driven to work hard and stay on top of my career despite the visual challenges that made my work more difficult.

Although I’ve been away from my professional work for nearly five years, I can recall the driving force which compelled me to strive hard in my professional work — namely, the desire to transform the teaching and learning of statistics. In particular, I strove to demonstrate the importance of empirical research as a foundation for better ways to teach students and assess learning.

When I was completing my doctoral research back in 1980, the field of statistics education did not exist. There were no research journals, books, or scholarly communities to support and disseminate this information. I was fortunate to be part of this new field as it emerged and grew. In the 1990s, more attention began to be paid to statistics education, and I wanted to be involved in every aspect. I was powered by a missionary type of zeal to transform the teaching of statistics. My message was how to enable students to succeed in statistics by focusing on data, activities, and visualization tools. My intention was to make statistics less of a mathematics class, and more of a literacy class. To this day, people regale me with horror stories of the terrible statistics classes they have endured (or failed). I wanted to change these experiences in order to empower students to learn and use statistics in a positive way.

Because I had a background in mathematics and educational psychology, as well as in statistics, I could communicate with professionals in all these fields. I kept extremely busy presenting at meetings, writing articles for journals, and giving workshops on teaching and assessment methods. I admit to being an overachiever, but it was more about wanting to accomplish the work than just add to my CV. I am proud to say that the students I advised and mentored are now carrying on this work (without me!), which is the best reward of all.

Back To My Story

Fast forward from the summer of 2002 to June, 2004.

I was invited to a special research gathering at Carnegie Mellon University. I was thrilled to participate — to share my research and hear about the cutting-edge work of others. As I sat listening to a presentation, I held up a handout to my right eye to read with my little blurry island of vision. To my surprise and concern, it was much harder to read than previously. An alarm began to sound in my brain: was there more deterioration in my right eye, the one that had begun my vision loss five years earlier?

After returning home, I went to see my retinal specialist, Dr. Terry, who ran all the usual tests. Afterwards, as we sat together in the room where I had had many laser surgeries, he informed me that he saw nothing different in my eye and that there was nothing he could do. In fact, he told me that he could never figure out why I had that island of vision in my right eye, because the scarring in both eyes looked identical. My island of vision, ironically, had never been visible in any of the pictures taken of my retina.

I was devastated. The island was disappearing. How could I continue working, reading, and writing without this little island, and why couldn’t Dr. Terry try to restore it? As I pondered this problem, I decided to try to consult with a different retinal specialist.

I reached out to a colleague in the Psychology Department at the University of Minnesota, Gordon Legge. He was also legally blind, but had less vision than I did. I had read about him in an article that described both his vision loss and his research related to vision disability. I emailed him and asked if I could meet with him for some advice.

Gordon was welcoming and helpful. I enjoyed hearing his story and telling him mine. I asked him if he had a retinal specialist he liked, and he gave me the names of two specialists whom he knew through the university. When I looked them up, one had left the area, and the other, Dr. Ryan, now worked in a local retinal surgery center. I called Dr. Ryan’s office and made an appointment.

My New Retinal Specialist

Dr. Ryan’s office was entirely different than Dr. Terry’s, which was in an ophthalmology center where all types of patients came in, even just for routine eye exams. In contrast, Dr. Ryan’s office served only people with retinal problems. It was smaller and quieter, with mostly elderly patients. There were shorter wait times, which I appreciated. A major difference was that the staff seemed very caring and compassionate, especially while administering tests and procedures. I felt like I had landed in a comforting and kind environment, for which I felt very grateful.

Dr. Ryan was also a comforting and kind man. After examining my tests and my eye, he told me his assessment. He saw some loose matter floating in my eye that could be blocking the tiny area of my retina that provided the island of vision. He thought it might be a sign of an impending detached retina, this time in my right eye.

This was upsetting news. I told him I was supposed to travel in a few weeks to a conference in Copenhagen. His response was, “I’m sure you will find a good retinal surgeon in Denmark.” That was not what I wanted to hear. As a result, I cancelled yet another trip overseas so that we could wait and see what might happen to my eye.

I never did have a detached retina in my right eye, nor did any of the “floating material” disappear. And so I learned to live with the new state of my eyesight. I relied more on magnifiers to enlarge print or read labels. Life went on. I took a sabbatical and used my credit from the cancelled Copenhagen ticket to later fly to Israel to work on a book with Dani, my colleague there. Dr. Ryan became my new retinal specialist and I never returned to Dr. Terry.

Becoming a Research Subject

When I met with Gordon and learned about some of his vision-loss research, I agreed to be a subject in his studies. Over the next few years, I participated in three studies. The first was more of a focus group, with about twenty vision-impaired people. We were asked questions about what type of navigation tools might help us find our way during everyday activities. I was interested to find out that compared to the others, I had much more usable vision. It was good emotionally and intellectually to gain that perspective.

The second study turned out to be quite distressing. It had to do with navigating through a building while blindfolded, after first learning the route I would take. I think I was also spun around on a device so that I would not know in which direction I was going. I was terrible at following the prescribed route and felt close to tears as I realized I could not find my way. I did not return to finish that experiment. I began to realize the emotional and psychological impact my vision loss was having. Eventually I would deal with this when seeing a therapist. And it would lead to an unexpected gift.

Next post: Dealing With Loss