Encouragement Plus Coaching

Dealing with Vision Loss:
My Story

By Don H. Morris
Life Coach

Reprinted from
VISIONS Newsletter
Alliance for the Blind and Visually Impaired
Senior Services * Memphis, Tennessee
Vol. 4, No. 8 August 18, 2000
Editor: Don H. Morris

From the Author: I was employed as the adjustment counselor for the Alliance for the Blind and Visually Impaired in Memphis, Tennessee, from September 1997 through November 2001. Since January 2002 I have been working as a personal development coach in Little Rock, Arkansas.

Dealing with Vision Loss: My Story
By Don H. Morris
August 2000

Editor's Note: I am encouraging all of our blind and visually impaired readers to tell the ongoing story of their adjustment to vision loss. I have been asked to share my story, too. As with all of us, it is unfinished. Hope you enjoy it!

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That Fateful Day

      I started losing my sight in the fifth grade. At that time I dreamed of becoming an astronomer. I loved to study star charts and look at the sky on clear summer evenings.

I had been sitting on the second row in class most of the school year. That Spring James Stake, my best friend, and I decided to move our desks to the back of the classroom. We got permission from the teacher, and moved all our books, paper, pencils, and erasers to suitable seats on the next to last row. We settled in, excited about the change.

All was going well until Mrs. Saunders began math class. She wrote a problem on the board, and asked for someone to solve it. I looked up, squinted, and tried to read the numbers. I could not see the blackboard from my new seat! I immediately burst into a flood of tears.

Mrs. Saunders did not seem to know what to do with a crying student. She tried to comfort me, but I was inconsolable. The only thing she knew to do was suggest I visit an optometrist. She said I could get glasses and see well again with them.

I visited an optometrist a few weeks later. He prescribed glasses, but they did not help. Even with those thick lenses with those black Buddy Holly style frames (embarrassing for an eleven-year-old), I could not see clearly what I had been able to see only a year before. My vision grew slowly worse. Worst of all, the doctors could not tell me why. The deterioration is still going on more than 35 years later.

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I Finally Learned Its Name

In junior high school I learned the name of this mysterious condition. It is called Stargardt's Disease, a form of macular degeneration that begins in childhood. By age 14 I was legally blind. I could no longer see the stars clearly. I had to give up my dream of becoming an astronomer.

When the other guys were playing sports and learning to drive, I sat on the sidelines. Oh, sure, I could still play for fun, but I never made the varsity teams like my brothers. I have never driven a car. I had to wait three years until my younger brother was old enough to drive. He took over driving responsibilities for my mom. He would take me anywhere I could not walk or ride my bike. There was no public transit in rural Arkansas in the 1960s.

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Sometimes It Gets Bad

People are often rude and apathetic to visually impaired individuals. Sometimes they ask very personal questions, and make thoughtless comments. When I was younger, people would often ask me why I did not get glasses. I felt as though they thought I was too stupid or too stubborn to wear them. Later people would give me low power magnifying glasses, without asking if I could use them. Very few sighted people ever took the time to try to understand how I felt. This made me feel alone and isolated. People seemed to either ignore me or pity me. I cannot say which was worse.

I remember vividly an incident from my college days that has stuck with me all my life. A young woman who had been friendly toward me started avoiding me after Christmas break. I was hurt, especially because I could not figure out why she was so cold. I learned later that her mother had warned her not to get involved with me. As a blind man, this woman believed, I would never be able to support her daughter. She did not want to take the chance that her daughter would fall in love with me.

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Family Support Is Precious

Despite these experiences, I always had support from my family. Three of my brothers and sisters also lost their sight. While we were at home we were the only other people any of us knew who was going through the same kind of pain. My mom would drive for hours to take us where we needed to go. She was always there for me. At the same time, she never allowed me to use visual impairment as an excuse to get out of assigned chores. She maintained high expectations for my achievement, even when it seemed no one else did. My family has always stuck together, and supported each other.

Five years ago I met my wife, Janie. She has accepted and supported me with that same no-nonsense attitude my mom has always displayed. As a rule, Janie does not do anything for me I can do for myself. We are truly equal partners in life's journey. She is my best friend, too!

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Rehabilitation Services Helped

I received financial assistance from Vocational Rehabilitation Services for college. Up to that time I could read whatever I needed to, as long as I held it within a few inches of my eyes. At about age 20 I discovered I could no longer look up numbers in the phone book no matter how close I held it. In my late 20s I found I could not read the larger print of newspapers and textbooks unaided. That is when I started using adaptive aids regularly.

I remember how excited I was when I got my first magnifying glass with high-quality optics. It was a 4X Coil. I wore that magnifier out, taking it with me wherever I went. I continued to carry that old scratched lens in my pocket even after the plastic handle broke off.

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A Dreadful Deterioration

Later I moved on to stronger magnifiers. In my middle 30s I could no longer read giant print books even with the strongest magnifying glass available. I began using a CCTV at that time. Now I depend on my CCTVs both at home and at work. I cannot imagine my life without one! I require screen enlarging software in order to use a computer. In addition, I rely on auditory aids, such as my talking watch and books on cassette. I also use tactile markings on my appliances. These adaptive aids are essential for me to function competitively in the work force. I call them my "equalizers."

But the very best adaptive aids are still not perfect. I know the frustration and pain of living without sight. Using adaptive aids, no matter how advanced, is not like having your sight back. One of my biggest disappointments came eleven or twelve years ago when I had to quit riding my bike. It took running into a parked car I did not see to convince me riding a bicycle was not safe for me, even in quiet neighborhoods.

Then in my middle 40s I gave up jogging on the streets, a pastime I used to love. For the past year or so I have been wrestling with the decision to use a mobility cane regularly. I have found myself almost colliding with passers-by and fire hydrants I did not see. I have to ask myself, "What will happen next?"

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Not All Problems Are Due to My Sight

I often have to remind myself that I have my share of difficulties that are unrelated to my lack of sight. These include my shyness, passive nature, and inadequate communication skills. I have had to deal with the pain of an emotionally distant father. I had a broken engagement when I was 23. I have been diagnosed with clinical depression at several periods of my life. These are normal problems that could happen to anyone, sighted or not.

My poor sight, however, complicates some of my problems. I would like to just drive alone over to see someone for a visit or to discuss a private problem. As it is, I must work around someone else's schedule. I must give more thought and effort even to the small areas of life than I would if I could see. I have learned to use whatever is available and to do whatever is required in order to establish and maintain a high quality of life.

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Job-Hunting Woes

Through the years I have had a variety of jobs. I worked at a theater in high school, as a janitor in college. I worked at a lumber mill and hauled hay several summers. Later, after dropping out of graduate school, I worked as a museum tour guide for a year. I then returned to school, and got my master's degree in theology the year I turned 30. I worked several years as a campus minister. Most of these jobs were short-lived. I was passed over for many jobs that matched my training and ability. I often felt relegated to low-paying jobs that bored me.

I know the disappointment of being turned down for jobs that were very important to me. When between jobs, I went back to school and earned advanced degrees. School was a haven for me. When enrolled, no one would hassle me about getting a job. As a graduate assistant I found my sea legs. I excelled as a teacher, a counselor, and a researcher. I found that I had a great deal to offer to others.

Job-hunting has always been extremely challenging for me. I am quite shy, and get anxious meeting new people and facing new situations. I married Janie and completed my doctoral dissertation in 1996. I began a serious job search even before graduation in August of that year. It took over a year to find a full-time job. I did not get a single job interview in the first six months.

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The Perfect Job?

In July 1997 I interviewed for what seemed to be the perfect job. I was called back for a second, and then a third interview. Then suddenly my application was quashed by the senior director of the agency. When I inquired why, he said, "This position is paper-intensive, and you won't be able to do the work." He never asked how I proposed to meet the demands of the job. He did not even bother to meet me in person before making his decision.

It turned out that an even better opportunity was awaiting me. A few weeks later I interviewed at Senior Services. I was hired as the adjustment counselor for the Alliance for the Blind and Visually Impaired in September 1997. I feel very fortunate to be in this position at this time. I am committed to sharing what I have learned with visually impaired people of all ages in our community.

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Making a Difference Where I Am

I believe I am making a difference in the community. I facilitate a monthly peer support group with an attendance of up to fifty people. I impact lives by editing VISIONS, the monthly newsletter of the Alliance for the Blind and Visually Impaired. Because I am here,^* I am able to share my story with you. I would love to hear your story as well! We will publish readers' stories, or excerpts of them, in future issues of VISIONS.

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^*NOTE: This article was written in August 2000. I left the Alliance for the Blind and Visually Impaired in November 2001.