Winter 2002: Adapting and Making Changes
This is the seventh installment of my new blog, Vision: A Journey
Learning to Adapt
Anyone who has lost or partially lost an ability (e.g., to see, hear, walk, etc.) has to learn (or relearn) how to live without that ability or live with reduced functionality. I think I went through three main stages of adaptation to living with a vision disability.
The first stage was learning what I could no longer do. For example, I would try to read a sign and realize with frustration that I could not see it.
The second stage was figuring out how to compensate. For example, I would search my purse for my monocular and put it to my eye to read a street sign. Or, when trying to read a menu, reach for my lighted hand magnifier. I often felt conspicuous using these tools and embarrassed for needing them.
The third stage was automatically doing what I needed to do (using a tool or asking for help) without even thinking about it. At that point, I had fully adapted and integrated these changes into my daily life.
The areas in which I needed to adapt and make changes included the following:
1. Independence. I was used to doing things on my own — traveling alone, driving myself around town. Now, I felt dependent on others, especially Michael, to give me rides and travel with me. I felt I needed someone to be my eyes, guiding me through airports, reading menus to me at dinner, and chauffeuring me to work or to stores. I felt fearful of taking buses and taxis because of having to see and handle money, keep track of where I was going, and needing to ask for help.
One of the things I had to work hard on was telling people I could not see (often saying I had “bad eyes” — later, I would say that I had low vision or I was vision-disabled) and asking for help. Many years later I would become adept at taking buses all over the Twin Cities and calling Uber. Also, as part of my new “walking practice,” I learned to walk many places instead of driving or even taking the bus. So feeling independent eventually returned.
I made appointments with both a low-vision optometrist and an occupational therapist to help me live more independently. In addition to being outfitted with the monocular and lighted hand magnifier, I bought special double-lens glasses to watch TV and a glasses attachment to use for reading.
I also learned about OTT lights, which have a more natural, bright light that enabled me to see better. I bought and installed several of these lights around the house. Most valuable of all was being taught to consciously change my visual focus. I found that if I looked above the object of interest (e.g., someone’s face) rather than at it (which showed only a grey blur), I could see that object with my peripheral vision. After a while, this process became automatic. Now, I always look above what I am trying to see. My brain has somehow adapted and even manages to coordinate the vision from my two eyes, which is quite different.
2. Reading. I had been an avid reader all my life. Now, although I could hold up a book close to my right eye, which had the little faint island of central vision, I could not actually read a book any more. I used to love reading magazines, but could no longer read their tiny print. To read a newspaper, I scanned the headlines. That was all I could see.
My sister Ann, a librarian, signed me up for the Library for the Blind, which sent me a big clunky cassette player and cassette tapes with recorded books. The first two recorded books I received were both memoirs written by people who were blind. I listened with interest, but after two of those I was ready for some good fiction! I was able to request and receive books of my own choice. Many were quite good, but others were read by narrators with wavering voices who sounded quite elderly. There were often pronunciation errors that irritated me.
Therefore, I started to buy commercial audio books, also on cassettes, that were read by professional narrators and actors. I would carry a portable cassette player with me whenever I traveled so I could listen to my books. Later, as technology improved, I would switch to digital downloaded books and listen to them on my iPod or phone. I was even able to subscribe to the audio version of my favorite magazine, The New Yorker, for several years, until they stopped producing an audio version.
The silver lining in listening to books as compared to reading them is that I developed a greater appreciation for good writing. Listening allowed me to focus on the writer’s language and style. When I read books visually, I often focused on the plot, and raced through them quickly to see how a story played out. Today, I love listening to books and magazine articles while running, walking, or lying in bed before going to sleep.
3. Shopping. I have always loved going to grocery stores and markets. Now I had trouble finding products and reading labels. I would have to hold an item close to my right eye to read a label or price, and I was often frustrated by not being able to see what items were on top shelves. When Michael came with me, I could ask him to help. But he was often in a hurry, while I wanted to linger and see what was new or interesting. Now in 2020, during the pandemic, I find it easier to order food online because I can search for items easily and read labels by enlarging the font.
4. Teaching. I was the kind of teacher who always learned my students’ names and tried to get to know them as people. Now I had to figure out how to see their faces, recognize a raised hand, and even read my own overhead slides. Fortunately, I was able to hold the textbook up close to my eye when I needed to refer to a problem. I began teaching in a computer lab where I could use ZoomText on my computer to demonstrate software activities. But when students asked me to look at their screens when something went wrong, I was often helpless. I needed an in-class TA to help me. Luckily I was able to find a good person for this job.
5. Exercise. I had been a runner for over 20 years, and had often belonged to a gym where I took exercise classes and went swimming. I had not been doing either since my vision problems began. After the winter holidays in 2001, I realized with horror that I had managed to gain over 30 pounds during the previous few years. I wanted to get back in shape but was not sure how.
My friend Kathryn had joined Curves, which she enjoyed, so Rebecca and I went to check it out and I signed us both up for a circuit training exercise program. Rebecca showed me what to do and having her there enabled me to get back into exercising again. I enjoyed Curves and shed some extra pounds, but Rebecca lost interest after a few months and stopped going (it was mostly middle-aged women). It was harder for me to go on my own, as it was about eight blocks from my house and the streets and sidewalks were full of snow and ice. I did not feel confident walking there and no one was available to give me rides. I decided to quit Curves and buy a good treadmill to use at home.
Finally, I was ready to return to running. When the weather improved, I started running outside again, and many years later joined the YWCA, where I have enjoyed many classes as well as swimming. There, my visual challenge was to determine where there was an open lane to swim, and I have learned to ask for help in identifying a free lane. In classes I have learned to tell instructors about my vision disability and to stay in the front row where I can better follow the teacher. Happily, I have a full exercise routine again.
6. Sewing and Cooking. I had been quilting for a few years and had a huge collection of fabrics, quilt books and related materials. Now it was hard for me to thread a needle or line up pieces of fabric to follow a pattern. I had to learn to change my style of quilting, to improvise more and not follow precise patterns. I also decided to buy a new machine that had a self-threading needle attachment, which worked well.
The main problem with cooking was reading recipes in cookbooks, especially looking up recipes in the index. I ended up giving away many cookbooks and searching for recipes online that I could enlarge to read or print.
7. Playing music. I had taken many years of classical violin, and later viola, lessons. I had boxes of scoresheet music, as well as my father’s violin and my own viola. Now I could no longer read music. I felt terrible about the prospect of losing all those years of training and playing. Then on a trip to Ireland, while enjoying a musical pub crawl, I talked to an Irish fiddler. He told me he had learned to play without music, just by ear. Back home, I was inspired to find a teacher who taught me to play the Irish fiddle by ear. I took lessons for several months, and was grateful to a friend who drove me to lessons and patiently waited for me. But when she stopped offering rides, I found it too difficult to take the bus on my own, so I had to end the lessons. But another pandemic silver lining is that I now play music each week on Face time with my sister, mostly playing by ear.
Trip to San Diego
After a stressful and challenging fall semester, I prepared to return to my fulltime responsibilities as a faculty member at the University of Minnesota. However, before classes resumed in late January, I planned to attend the Joint Mathematics Meetings in San Diego. This would be my first time traveling alone and attending a professional conference after losing my central vision. The planning and anticipation began!
Next post: Winter to Spring
