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Vision Loss in Later Life: My Personal Story

Editor's Note: Editor's Note: Carole Robertson is the president of the Toronto Chapter of NFB:AE.

Becoming blind in my later years has changed my life. How have I moved from being a sighted person to a vision-impaired advocate for the blind, partially sighted and Deaf-blind?

I began my career at age 19 as an elementary school teacher and taught students from high school through university. In order to raise my three sons, however,

I left teaching. Taking university courses along the way, I obtained a degree in anthropology and later a Masters in environmental studies, focusing on the social environment. I worked for several years as a volunteer organizer for a health-related service agency, where I gained much experience in relating to people of various ages, economic and social backgrounds. I also was very active at a high level in community work.

On June 26, 2000, I busily continued my numerous activities, such as driving, computer work, shopping, phone calls and reading, totally unaware that my life would change overnight. When I awoke the next morning, I saw flashing lights and strange figures swirling before me.

By the time I had undergone an exam and test that day at my doctor's office, I couldn't see at all, and for the first time I had to be escorted. After further tests at the hospital, I was told I had had a blood clot in my eye, but now it had disappeared. It had, however, destroyed the optic nerve.

I returned home that day blind.

Now what was I supposed to do? I could not really believe I would never see clearly again. How would I cope?

I had just bought a new car. I depended on driving because I couldn't walk very well as I had a serious back problem.

So many thoughts were going through my mind. How could

I manage our home? How would I read to my baby grandchild? How could I cook, go shopping, read, watch television, etc.? I didn't know where to start.

My family had to adjust--accept my condition and figure out how to support me. I felt very guilty because of what I perceived I was doing to them.

Then there was my volunteer work, obligations that I take very seriously. How could I fulfill my many commitments?

Right from the beginning, I knew that I would eventually have to mourn my losses and get on with life. I also instinctively knew that no one wants to be around a complainer. It would also do me no good to be depressed. There is no future in pessimism.

So I decided on a plan of action. First, I needed to find out as much as I could about blindness, the blind community, what services were available and what other kinds of help I could get.

My family physician told me about the Community Care Access Centre (CCAC), and they assessed me to see how they could assist me.

I then called the Canadian National Institute for the Blind (CNIB). A rehabilitation teacher informed me of the agency'services, asked me what I needed help with and arranged to see me weekly. She also arranged for an orientation and mobility instructor to teach me how to navigate the streets safely. This instructor also suggested some good tips for shopping, travelling, etc. I was also told about the many recreational clubs, athletic and social activities that were available for blind or partially sighted people.

Gadgets, gadgets, gadgets! before I knew it, I had accumulated many audible devices" watch, clock, timer, calculator, blood glucose monitor, money identifier, talking book machine, tape recorder and a phone that dials preset numbers in response to voice commands.

I also learned how to identify settings on my appliances, tape recorders and remote control for the TV. An occupational therapist helped me organize papers, medicine cabinets, drawers and closets.

Through the Assistive Devices Program, I purchased new computer equipment, including software that can read my email text messages and my typing so that I can stay in touch with people, and a scanner that can read other printed materials.

My family has been wonderful, driving me places to shop, going to the theatre, movies and many other activities. My friends also rallied around me they formed a support service to ensure that every weekday someone would come and escort me on errands, to lunch or any other activity I chose. I didn't want them to feel obligated, but they looked upon it as an opportunity to help me and have fun as well!

My husband took on many new roles. He became the family's chief cook, chauffeur and bottle washer, shopped with me for groceries, gifts and clothing. The most wonderful joys are his reading to me daily was able to listen to his reading of all the bestsellers, books for book reviews, magazines and newspapers.

So, one of my strongest coping skills was to learn to count my blessings. That was not so easy because I felt I had so many losses associated with blindness.

Nevertheless, I grew to appreciate all the help I had, learned to listen carefully, smell the aromas of places to which I went, and feel the excitement of my surroundings. That has helped me sort out my feelings and misgivings about travelling to different places.

I really wanted to be involved in doing something to help myself and other people in similar situations. One of my friends told me about her cousin who has been blind for many years and did so much for herself and others. I called her, and she told me about her many experiences since becoming blind and gave me confidence, encouragement and hope for the future. She introduced me to the National federation of the Blind: Advocates for Equality (NFB:AE).

She invited me to an information meeting. I went, liked what they were doing and joined the group.

At the first Chapter meeting I attended, the group was discussing bylaws and some advocacy issues. I made a few suggestions and gave my opinion based on past experiences. Then they had elections. I was nominated for President. I replied that I couldn't possibly take that position because I knew nothing about the organization. They all said I would learn, and learn I did!

Being blind, although it has many frustrating and discouraging times, also has some very amusing moments. When we had guests for dinner and the table was set beautifully, I noticed there were no napkins on the table so I said I would get them. Well, napkins come wrapped in plastic wrap and are soft. I grabbed what I thought were napkins and proudly held them up. It turned out I was holding a loaf of fresh bread! I asked my husband if he wanted a napkin sandwich the next day.

Then there was the time I walked into the men's washroom at a restaurant. When I discovered what I had done, I told the men there that it was alright because

I couldn't see anyway.

I record all my phone numbers on a tape recorder. One day I tried to get a number but could get nothing. I pushed every button I know, turned the tape backwards, frontward, and could get no response. When my husband came, I told him that he was going to kill me because I had erased all the 100 plus numbers he had painstakingly recorded. He too tried reversing the tape and trying different knobs but could still get no sound. He looked at it again and then said, How about turning up the volume?Needless to say, I felt foolish but much better!

Being blind has its benefits as well. It reveals who your true friends are, facilitates more careful listening, and gives you the opportunity to meet interesting people in the blindness community individuals you might not have met otherwise. And no longer do you have to look for a parking space or curb impulse buying!

I have been blind now for almost four years, and I look forward to learning more about blindness, meeting new people, and facing new challenges and experiences.

Comments

Hi Carole,

My name is Michael Bellantoni and I am a master's student at the Columbia Journalism School.

I read your story and wanted to reach out to you. I am currently writing a piece for my master's thesis telling the story of individuals who have done new, spectacular things in response to their later-life visual impairment. I was wondering if you could shoot me an email when you have a chance to chat a bit more about your experiences.

Thank you and regards,

Michael
mjb2243@columbia.edu

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