There is no organization like the American Cancer society for people who are living with potentially blinding diseases. The book, Living with Low Vision: A Resource Guide for People with Sight Loss, discusses the importance of self-help support groups. These are not the same as structured low vision support groups in medical centers where participants receive information but do not share personal experiences. Peer support groups are more often found at independent living centers or online.
There are many books by or about people who have lived with sight loss and blindness. I found three of these books when I wasn’t looking. Singer and songwriter, Ray Charles’ life story was made into the movie, Ray, and was mentioned in the first chapter of Destiny by T. D. Jakes (2015). The movie was based on Ray Charles’ autobiography, Brother Ray. The Hadley School for the Blind announced last month that they will have a call-in interview with the blind mezzo soprano and business woman, Laurie Rubin about her book, Do You Dream in Color? Fanny Crosby, a biography of the blind woman who wrote almost 9,000 poems and hymns such as “Blessed Assurance” more than 150 years ago was located after she was mentioned several times in Songs in the Night, Inspiring Stories behind 100 Hymns Born in Trial and Suffering. All of these books as well as many other autobiographies and biographies are available from the National Library Service for the Blind and Physically Handicapped, but they are difficult to find if you don’t know the title or author. Autobiographies and biographies written by people who are living with potentially blinding eye diseases or by doctors who have seen lives change because of modern surgical advances would be welcome sources of information.
Brother Ray by Ray Charles shows a man who lost his sight slowly as a child from an eye disease that might have been a form of glaucoma. After attending a school for the blind and losing his mother, Charles who learned Braille in 10 days and refused to use a white cane travelled by bus across the country to begin his music career.
In contrast, in Do You Dream in Color, Laurie Rubin’s autobiography, she shares her very privileged life where she lacked for nothing, had many doors opened for her, and learned how to open doors that many would have thought closed. Rubin recalls the discrimination she encountered as she pursued a career as an opera singer. Her book gives one of the best descriptions of how people train and live with guide dogs.
Fanny Crosby’s life is a paradox since she preached the Bible passage, “I can do all things through Christ who strengthens me” and set the bar and the philosophy that people living with blindness can do anything that sighted people can do even though she never learned Braille and dictated her hymns and poems just as Ray Charles had dictated the music he wrote to his musicians. Crosby’s determination to do everything a sighted person could do was formed long before automobiles, airplanes, and computers were invented. While she was able to ride a horse, she would not be able to pilot an airplane or drive a car. She, like many of her peers today, would do some of her work using readers, scribes, shoppers, and drivers.
All three books are rays of light and rays of hope for people who are living with blindness or low vision. They teach readers about how real people live with the uncertainty, fears, and challenges that come with the diagnosis of a potentially blinding eye disease and its progression. The resource that made the biggest difference in my life, however, did not come from any book about eye diseases but from the movie, The Theory of Everything, about Stephen Hawking. His life shows that loving what is left while living with a disability sometimes means slowly losing more of what is left because of the chronic nature of the underlying disease. This adjustment requires a lot of self love and a lot of love from others, including the love and dedication that comes from engineers and computer programmers who work to make the screen-readers and other adaptive technology people with disabilities use available.
In The Theory of Everything movie goers also see that it is very normal for a person to want to quit when medical procedures or daily life make living with a disability and a chronic illness overwhelming. Hawking did not quit but continued his work in spite of the many transitions he experienced.
T. D. Jakes says in Destiny, “You are a champion when you overcome adversity and go back to doing what you were doing before.” Ray Charles, Laurie Rubin, Fanny Crosby, and Stephen Hawking are all champions who did not let adversity stop them from doing the work they loved.
If you are living with low vision or working with someone who is learning to love what is left, I hope you found this blog helpful and find a self-help support group where solutions to everyday problems are shared and friendships are formed in the community where you live. Social media is wonderful, but it does not replace face-to-face meet-ups with your peers. If there is no self-help support group where you live, you might want to start one at your library or church. Instructions for starting a self-help support group are available online and at some organization for the blind websites. As you are living with low vision and loving what is left, you can become a ray of light and ray of hope to someone else.