More Treatments: Fall 2001
By: Joan Garfield
Tags: Vision, Eyesight, Disability, Low Vision

This is number 6 in the series Vision: A Journey

After returning from our trip to DC to see a specialist, I headed back to work at the University of Minnesota. Two days later, as Michael was driving me to work, the car radio broadcast the horrendous news of the attack on the Twin Towers of the World Trade Center. Later, along with the rest of the world, we would watch the footage of a plane also crashing into the Pentagon — which we had just seen out the window as we took off from Washington National Airport on September 9. My vision problems seemed quite trivial in light of all the lost lives, damage and chaos following the attacks.

Back to Work

And so I tried to carry on with my professional life, commuting to work each day with Michael. I had been afraid to teach classes that fall, given my ongoing eye problems. Fortunately, my compassionate department chair, Mary McEvoy, gave me a special assignment to substitute for my teaching. It was a project to convert our yearly reporting of faculty activities to a type of online survey. In addition to that project, I was keeping quite busy, working on four different articles, all at different stages of completion and with different co-authors. I was also negotiating with the National Science Foundation about a major new grant proposal, as well as serving as a vice president of one organization and program chair of another.

During the spring of 2001, I had submitted materials in support of my application for promotion to the rank of full professor. I had been promoted to associate professor in 1978 in the college where I had previously taught, but the standards in my new department and college were much higher. Going through the promotion process is always tense and nerve-racking. In fact, I had taken to drinking daily martinis during my previous promotion process! Now I wondered if I should withdraw my materials and give up on promotion, given my current ongoing vision loss.

The review and vote would take place in the next few months, with a decision in December of 2001. I asked Mary McEvoy if she thought I should withdraw my application, and she told me in no uncertain terms that I should not. Her exact words to me were “Hell, no.” Another time, she told me I needed “cojones” in order to deal with some of the powerful, senior male faculty. Mary was a physically small but powerful person, who died the following year in the plane crash that took the life of Senator Paul Wellstone, with whom she was campaigning. I still miss her.

At faculty meetings that fall I would look around the room, trying to figure out who was there and who was talking. I looked for clues based on hair color, size, voice, etc. Then I tried to remember where people were sitting so I could try to better follow discussions. My mind was so busy trying to decode the puzzle of who was sitting where that it was easy to lose track of what was being discussed.

At one of these faculty meetings, I told my colleagues that I was not able to see people I passed in the halls or on campus, and asked them to identify themselves along with saying hello. Only a few remembered to do this. So, I often heard someone say “Hi Joan,” but would not have a clue as to who had spoken to me. It was frustrating and embarrassing.

Dark Clouds

As I continued to monitor my eyesight, it sometimes seemed as if dark clouds were descending across my field of vision. I would feel discouraged about the lack of possibility of a new treatment that might help me, and the thought of losing even more vision. Then I would try to cheer myself up by thinking of all the time I was able to spend with Rebecca, who had delayed going to college as well as cancelled travel plans to stay home with me that year. When my spirits would start to sink, she would remind me what a good time we were having together. Often after a doctor’s appointment (which was always stressful for me), we would go to a new restaurant and without fail, would share an enticing dessert. Rebecca was the spark of light that kept me going that dark year, and when she eventually did leave for college the following fall, I was desolate.

My daughter, Rebecca, in 2001

Quilting: Healing Stars of Hope

I had been quilting for a few years and I tried to keep working on a quilt I had begun before losing vision in my left eye. This colorful quilt was decorated with big yellow stars, and was to be a “reading quilt” to be given to a local elementary school, along with a book. My quilt guild collected these pairs of small quilts and matching books, which were then donated for use as a reward for reading. As my vision dimmed, I tried to keep working on this quilt, referring to the pattern as the “Healing Stars of Hope.” Seeing the quilt progress lifted my spirits, and the bright yellow stars seemed to be urging me on.

One square from my quilt, Healing Stars of Hope

Later, after I had finished the small quilt, I would change my plans and instead send it to New York as a gift for a child who lost their parents on 9/11.

Doughnut Vision

As I kept assessing my vision, I realized one day that there was a tiny island of central vision in my right eye, which had been the first eye to show degeneration, and which had not been treated. This little island of vision was not entirely clear, but if I tried hard, I could use it to read print. I discovered this when trying to look up a phone number in the university directory. It seemed like a miracle when I was able to make out the small numbers with my right eye. When I had my eyesight evaluated next, it showed that I had 20/40 vision in that eye (when wearing corrective glasses). I was thrilled. It seemed like an unexpected and precious gift. It enabled me to read labels and prices in stores, and to hold up textbooks close to my eye to read words and numbers. This little island of central vision was of great use to me for three years — until it disappeared. But that’s another story.

Last Attempts to Drive my Car

After having my eyesight evaluated as 20/40, one of the assistants told me that that score allowed me to drive with restricted license. That meant I could mostly drive in my neighborhood, not at night and not on highways. I had not driven my car since my left eye had begun to degenerate, and the idea that I might still be able to drive was thrilling.

Michael and I went out in my car to see how I would do. I drove to my local food coop a few blocks away, and that went well. I was hopeful that I might be able to have more independence by still being able to drive to nearby stores or friends’ houses. The second time we went out to assess my driving, I cruised right through a red light that I did not see. Thank goodness there wasn’t a child or a car going through the intersection perpendicular to my car. Shaken, I gave my car keys to Rebecca. I never drove again.

Getting Technical Support

I contacted the University’s Office of Disabilities to see what help they might provide me as I prepared to teach again in the winter term. After some phone calls and an interview, a few technical staff came to my office to evaluate my situation. They ordered all kinds of equipment for me, including a much bigger screen, and a different computer. I had been using a Mac, but the tech team told me I needed to switch to a PC to use the low-vision software “ZoomText” and another program for the blind. I was not blind and I was initially resistant to all the tools they wanted me to learn and use.

They tried to start me on another kind of software that would read print to me from my screen, but it required me to use keystrokes on the number pad, which was hard for me to learn. I needed to remember which key did what: read a sentence, read a phrase, read a word, pause, reverse, etc. It was too much for me and caused instant frustration, so I did not attempt to learn this software. However, I did appreciate the ZoomText software, which I greatly depend on to this day. It enables me to see and read on my PC.

The disability staff also ordered a scanner for me to scan documents to be read out loud. And they installed a special video machine that I could use to enlarge books and articles. The key tech support person was completely blind, and it was disconcerting to watch him work on my new PC while having everything read out loud to him. I admired his tenacity and ability to navigate all the technicalities of the software. It also helped me appreciate how much more usable vision I had than he did. Here is a picture of me in my office that is equipped with my new PC and associated hardware.

Later, the disability office would provide me with a part-time research assistant to help me with visual projects such as filing papers or recoding information from articles. I believe that the support I received from the University was exceptional. I would not have been able to work at almost any other job because of my limited vision. In fact, not only was I able to continue my work, but I was even more productive than before in terms of grant projects, articles and books. I believe the University was an outstanding place to work for someone suffering vision loss.

I don’t remember much else about that fall. I know the bleeding returned, and Dr. Terry tried performing the yellow laser technique on my right eye — the procedure for which I had originally been sent to Chevy Chase, Maryland. Dr. Terry now had the equipment to perform this treatment at the Phillips Eye institute, so I underwent yet another laser surgery.

Qi Gong

Then I tried a new tactic. My neighbor had taken a course in Qi Gong from a renowned local teacher, and she encouraged me to try this ancient Chinese healing technique to see if that could help stop the degeneration in my eye. Michael and I did some research, and even watched a video about Qi Gong. It seemed promising. Since none of the treatments had halted the vision loss, maybe the answer was that my body would be able to heal itself. We signed up for a four-week course with Master Linn and we learned basic Qi Gong movements and meditations. It was pleasant and interesting. We dared to feel hopeful.

Then, to my dismay, the same signs reappeared in my left eye: more fuzziness, an increased area of distorted vision on my Amsler Grid. Dr. Terry confirmed my fears: the bleeding continued. I wondered if somehow, my body was growing blood vessels in my retina as its own way of healing this thinning, tearing membrane, and the result was, paradoxically, more vision loss. I tried to pose this theory to Master Linn, but he said Qi Gong could only lead to good outcomes, not bad ones. Michael and I practiced at home for a few weeks after the course ended, but then we felt discouraged and we stopped.

Promotion

And so the fall progressed until it was December and time for the faculty vote on my promotion. It was a tense day for me, as my colleagues reviewed all of my work, teaching evaluations, and letters from external reviewers. It felt like every aspect of my professional life was being scrutinized under a microscope. Since my scholarly work was not conducted in a department of educational psychology, my file did not look like those of my colleagues. In fact, some of my external reviewers were statisticians, not educational psychologists. Mary McEvoy had been encouraging when I shared my concerns with her, and I am sure she advocated on my behalf. At the end of the day, she told me the good news. The vote was positive; I would ascend to the rank of full professor at the University of Minnesota. What a great relief and thrill that was. Although I don’t recall the details, I am sure we had a nice celebration that night.

The semester ended as I prepared to return to fulltime teaching after winter break. But first, I intended to relax and enjoy my vacation after a busy and challenging fall. I had my final laser treatment after Christmas. Now I would need to learn how to live my life as well as possible with my current, limited vision. And so I did.