Finding Balance
This is number 13 in the blog series Vision: A Journey
My sessions with Kate, my therapist, helped me in many ways. As the weeks and months progressed, I became more comfortable talking about and accepting my vision loss. Because my vision disability was invisible, and I did not use a white cane that identified me as being legally blind, Rebecca had once made me a little sign to wear (shown below). We thought this would help because it was hard for me to tell people I could not see or read what they were showing me, or to ask for help. But I never mustered the courage to actually wear this sign, so I pinned it to my bulletin board, where I recently noticed it.
Early on I used to say things like “I have bad eyes,” but realized how negative that sounded. Then I began to say, “I am vision disabled” or “I have a vision disability.” On occasion, I began to ride the bus and would sit near the front, telling the driver about my vision loss and asking him or her to notify me when we reached my destination. There were still upsetting situations, such as the time Rebecca and I attended a Broadway play. I had secured second-row seats so that I could better see the stage and actors. During the show, Rebecca often whispered to me, telling me things that were happening on stage that I could not see. At one point, someone in the row ahead of us turned around and hissed at her to be quiet. Rebecca replied angrily, “She’s blind and can’t see the stage.” I appreciated her defending me, but I was also embarrassed at my needing her explanation.
At the University, I told my students about my vision disability and asked them to announce their names if they ran into me on campus, and to wave their arms in class if they wanted my attention. I seemed to be accepting my current state of low vision and those around me seemed to be acknowledging it as well.
Cancelling Another Trip
After missing my big International Conference on Teaching Statistics (ICOTS, 2002) in South Africa due to my new vision loss and surgeries that year, I was planning to attend the next ICOTS, which would be held in Brazil in 2006. This time I was invited to give one of the keynote talks, which was a great honor. Having missed the last conference, I was eager to attend and see my friends there from around the world. However, given my poor eyesight, I was also nervous about traveling without Michael and giving a talk to a large number of people. I gave myself a pep talk, and planned to travel with my colleague and research partner, Bob. I felt he would look after me in Michael’s absence.
Shortly before we were to fly to Brazil, two things happened. First, the Brazilian airline we would have taken for the second leg of the trip went bankrupt and was cancelling many flights. I heard stories from colleagues who tried to fly to the conference city earlier in the week about how they either had problems booking alternative flights or had turned around and come home. That certainly worried us.
Then we learned that Michael’s mother, Dorothy, had fallen and was in the hospital with a broken pelvis. She lived alone in Long Island. Michael’s brother Alan had driven to New York from Philadelphia, where he lived, and observed that she seemed to be suffering from dementia as well. After several days, Alan needed to return home, and Michael agreed to fly to New York to relieve him. I knew he was concerned and would have liked me to help out, but I had promised to give a keynote address in Brazil.
Over the next day, I pondered what to do. I realized that if I missed the conference in Brazil, I would be letting down my friends and colleagues. But if I abandoned Michael and his mother (whom I loved very much) I would be letting down my family. In the end, I chose family over profession.
Once again, I cancelled the trip, leaving the organizers to frantically fill my plenary address at the last minute. But they managed. And I flew to NY with Michael to sort out the situation with his mother. I am so glad I did. This turned out to be a turning point in Dorothy’s life, as she was diagnosed with Alzheimer’s disease. We stayed with her until she was moved from the hospital to a nearby rehab facility. Then Alan and his wife, Jan, found a rehab facility near them in Philadelphia, so we drove her there. Once Dorothy was settled in (although not happy about it) we flew home. Several weeks later, we returned to move her back to her home in NY, at her request. Actually, she was so distraught about living in a new place that she threatened “to jump out the window” if we did not take her home. We were worried about her safety, but did as she asked. Dorothy lived on her own again for almost a year and then agreed to move to assisted living near Michael’s brother.
Although I was sorry to miss ICOTS, I was glad I did not have to deal with the cancelled flights and last-minute airline changes my colleagues had experienced. I was able to give the talk I had prepared the following year at the U.S. version of ICOTS, which felt great. And I had stood by Michael and his family during a difficult time, which I knew was the right decision. In part, this may have been because of all the time he had spent in the waiting rooms of eye doctors and during my eye surgeries, and in general being a steady comfort to me. Now it was my turn to be there for him, especially since I had not been so comforting during his bout with cancer.
Creating a Balanced Life
After obtaining my disability leave and reducing my appointment to two-thirds time, I continued to go to work five days a week. Gradually I reduced my time at the office to four and, a few years later, to three days a week. Michael chauffeured me to and from work each day. Our offices were both on the Mississippi River, just a mile apart. Although it was nice to be driven, I often resented having to follow Michael’s work schedule. It meant being stuck in rush hour traffic in the morning and coming home later than I would have liked. In those days I was reluctant to take the bus (about an hour each way) or a taxi, so I was often annoyed or impatient with having to base my work hours on Michael’s activities. It was another frustration over not being independent and not being able to get myself to and from work at my preferred times. Several years later I would become adept at taking buses and Ubers on my own schedule, which made life easier.
Once I settled into my new work schedule, I began to use my days out of the office for relaxing and rebalancing. Although I also worked at home on those days, mainly reading and writing on my computer, I went for runs at the nearby lake, took walks, quilted, and worked on my creative writing project (a memoir about my life and the food I ate and prepared). These activities contributed to my mental and physical health, and gave my eyes a break from looking at computer screens all day.
Feeling Better
After meeting with Kate regularly for two years, my tears had stopped flowing and my spirits had improved. I felt happier and more optimistic about my life. In fact, Kate confessed that she had no reason to continue my therapy and to file an insurance claim as to why I needed to keep seeing her (as she was out of my insurance network and had to be reapproved each year).
We decided that I did not need to continue seeing Kate on a regular basis. It felt like a graduation of sorts. We said goodbye, and agreed that I would return as needed. And from time to time I did go back to Kate, including the year of my insomnia (see Chronicle of Sleepless Nights).
I felt comfortable traveling around the U.S. on my own, and took several trips each year to attend conferences, give talks, or evaluate programs. I enjoyed my connections with colleagues around the country, and invited many of them to visit to give seminars at my university and meet with my students. My graduate program was growing and thriving, and now had four faculty and a great group of students. Grant funding helped support many of them, as well as their travel to conferences and workshops.
Eventually I began to recognize a gift that came with my vision disability: obtaining a partial disability leave enabled me to balance my life. I now had time for other things that renewed and energized me. I found that I relied on the days away from my office to recover from the days of intense visual work that consumed me at my job. The rest days that my disability leave provided enabled me to teach my courses with energy and enthusiasm, and to stay productive writing and running grants, working with doctoral students, and keeping active in my professional community. If I had not lost my vision and had not received a partial disability leave, I think my over-achieving, workaholic life would have prevented me from ever finding the calm and balance I craved. I probably would have not retired when I did, and might still be working full time today.
I adjusted to the new structure of my life. We began to take hiking trips in Europe in the summers. I bought my first digital camera, and with the help of my postdoctoral fellow, Ann, learned to use it and to take (and edit) great photos. I filled our house with enlargements of my photos over the next few years. Surprisingly, having no central vision seemed to enhance my ability to set up and take a good photograph!
Another friend convinced me to get an iPod and use that to download and listen to audiobooks. I joined the online audio bookstore, Audible, and was thrilled to carry dozens of books with me wherever I went, thanks to this little device. No more carrying clunky cassette players and numerous cassette tapes to listen to while traveling.
Our children had settled down on opposite coasts, and we enjoyed visiting them a few times a year. Our life at home felt full and happy. Yes, there would be more losses. But when they occurred, I realized that I had survived those first ones and was better able to face the next ones. And happily, Rebecca returned to me a few years later, and we once again enjoyed a close and loving relationship. Over time, both children would move back to Minneapolis and raise families near enough for me to walk to their homes. But that was still a few years away.
Next post: More eye surgery
