February 12, 2001
My first encounter with vision loss came in 1981. I was approaching my ninth birthday, and a large cataract had reduced my vision from 1/200 to the ability to see hand motions. I do not recall being aware of this deterioration. My parents decided to have the cataract removed. My mother's journal entries suggest that I was quite emotional during the week of the surgery, but they also reveal that a particular experience must have caused me to understand why the surgery was necessary. When I was finally able to open my eye, I fought the sedative effects of medications so that I could look at windows, lights and objects. "I understand now," I said.
My vision was relatively stable until 1986. At the age of 14, I began to experience ocular migraines. During an ocular migraine, the blood vessels in the retina and around the optic nerve constrict, and the person experiences a temporary loss of vision. I first experienced these temporary losses during the summer, while I was attending a five-week program at the Texas School for the Blind. They continued for two years, during which time I took oral beta blockers. I was frightened, remembering my interactions at summer camp with a girl who was losing her vision because of glaucoma. She experienced intermittent periods of vision loss and had been told that one day the loss would be permanent. Would this happen to me?
At some point, my vision stabilized again, and I forgot about my fears. However, in the fall of 1991, the familiar grey curtain returned--and this time it did not go away after a few hours. In fact, it did not go away after a few days. My memories of the girl from summer camp returned and haunted me.
In December, 1991, I was diagnosed with glaucoma. I began taking eye drops daily, and although my intraocular pressure was still high my vision returned. During the summer of 1992, I had surgery in an attempt to lower the pressure to an acceptable level and preserve my remaining vision. Once again, things stabilized, and once again I forgot my fears.
In 1998, the grey curtain returned again. I made the old familiar trip to the eye doctor, and he suggested that a cornea transplant might benefit me. The cornea in my right eye had become scarred, and he could no longer see the retina. I was not able to have surgery for several months because of a cross-country move. During this time, my vision fluctuated a lot. On some days I could make out some forms and colors. On other days, I could not tell whether a light was on in the room. I became depressed and afraid.
Were I a fully sighted person, I would expect the fear and other feelings to be normal. Losing vision would mean having to learn new ways of doing things: new ways of cooking, new ways of getting around, new ways of reading and writing... But I grew up using these "alternative techniques". I grew up using them because my parents were aware that I could someday lose my vision because of complications of ROP and felt that I should know how to use these techniques ahead of time.
So Why was I having so much difficulty coping with vision loss? Why did I insist on seeking out treatment? I felt guilty at times for wanting to hold onto my vision. Perhaps I would be looked down on because I did not "accept my blindness". What did accepting blindness really mean?
People with degenerative eye conditions often close their eyes or turn off lights and practice dressing or locating objects, rehearsing and trying to adjust emotionally to the idea that someday they will live their lives in this manner. Some professionals even recommend learning new skills while wearing occluders or sleepshades. (Alexander, 1994; Willoughby and Duffy, 1989) This technique forces people to learn that it is possible to accomplish everyday tasks without vision, therefore allowing them to adjust their thinking about blindness and rid themselves of he idea that they will become dependent on others for everything. Some people see this as an advantage. They are not thrust suddenly into a new world for which they are unprepared. Yet the death of their sighted self is slow and painful.
The learning of new skills is an important part of the adjustment process for many people. Older people who are retired may struggle to gain access to training in new skills or assistance in adjusting to living with vision loss. (Stuen) Rehabilitation services are generally intended to assist people who plan to seek out employment. Those people who have access to rehabilitation services have often endured long waits before obtaining much needed technology or training and lack of information about training options available to them. Many blind people feel that agencies for the blind take advantage of the needs of blind people to create and maintain employment for sighted people, and thus employees treat clients as people who are dependent on their help rather than people who should be enabled to help themselves. (Putnam, 1997)
In addition to the needs for alternative techniques which it presents, blindness changes a person's identity. Some professionals have compared the onset of blindness to an experience of death and rebirth. (Carroll, 1961; Cholden, 1958) The sighted person dies, and a new person--the blind person- -is born. However, the new blind person is not a new person, and the sighted person is not entirely dead; for the blind person carries the memories and feelings of the formerly sighted person. He faces a number of losses, some or all of which he must grieve.
The identity of the person who loses vision is changed from his previous identity to that of "the blind," and he is forced to cope with whatever this means for his interactions with family, friends and others in the community. These interactions will be shaped both by his actions and by the other person's beliefs about and understanding of blindness. Unlike the newly blind person, sighted people have not learned how to perform daily tasks as a blind person. Even if they were to don simulators or sleepshades, their experience of blindness would most likely be an experience of fear and frustration because it was not accompanied by guidance or training in adjusting to having been thrown suddenly into this new world where objects appear blurry, faint, or nonexistent. Unless they have had previous positive interactions with people who are blind, sighted people may not relate "normally" to the blind person upon the first encounter. Some may treat him with pity or as a child while others treat him as a person who is just as capable as any other person. Still others may believe that blind people have special abilities, and this belief may cause them to treat a blind person as "amazing". (Tuttle, 1996)
Thomas Carroll identified twenty losses which affect a person who loses vision. He divided the losses into several categories: losses of psychological security, losses of basic skills, losses in communication, losses in appreciation, losses concerning occupation and recreation, and losses affecting the personality. Adjusting to some of these losses is easier than to others, and some losses will affect one person more deeply than another.>[?
When people discuss vision loss, they generally assume that the person losing vision has at one time been fully sighted or nearly so. However, certain eye conditions cause children to be legally blind but retain some vision. How these children use their vision varies, and this affects how they react to loss of that vision when complications arise. (Schulz, 1980)
Rehabilitation should address all aspects of the adjustment process which affect the person who has lost vision. Self-esteem is affected by the loss of communication or other skills (Beach, Robinet, and Hakim-Larson, 1995) but regaining these skills via alternative methods can be difficult if the feelings about vision loss and related issues have not been addressed. (Holbrook and Koenig, 1992; Hudson, 1994)
I had studied blindness on an academic level in college. My childhood dream had been to teach blind children, and pursuing it meant that I took classes on topics such as concept development, teaching methods, and eye conditions. I eventually became interested in the psychological aspects of blindness and began to read voraciously about self-esteem and blindness.
As I read, memories of my own childhood came alive. I recognized that many of the things I was reading about applied to me, and this new understanding of myself led me toward healing from old pain. began to seek to develop better social skills with the help of family, friends and therapists. But I treated literature regarding adventitious blindness as facts to be remembered in my interactions with future students or clients. These did not apply to me. I was already blind. My vision was so minimal that losing it should not have an effect on me.
My reading of Carroll's discussion of the 20 losses of blindness had not been very thorough. If it had, I would have realized how silly this belief was. I did not realize it until one day in the fall of 1998.
It was a rare day when I could see some shapes and colors. I stood talking to a teenage cousin with whom I had previously spent very little time. As we talked, I gazed at her face and realized that I thought she was pretty. Pretty...? The last person I had thought was pretty had been a girl in my fourth grade class! I didn't think I could see well enough to think something was pretty. I was wrong. I had preferred certain colors since I was very young, even if I couldn't identify them correctly. If I lost my vision, I would no longer be able to appreciate that anyone was pretty. I had never seen a person who I considered ugly. Most people were just ... people. But I would miss the occasional glimpses of people and things I considered beautiful.
I had learned to do things without depending on my vision from a very early age. But I had never found a way to "turn off" my vision. Light, color, and shape captivated me. I relied on my cane or dog guide to warn me of obstacles, but while traveling I found myself constantly marking off where I had been using visual as well as tactile and auditory landmarks. Had I been wrong to do this? Did it mean that I was failing to prepare myself adequately for vision loss? Did it mean I was too dependent on my vision or, worse yet, that I believed vision was necessary? Such a belief was, I had learned through reading certain pieces of literature, rampant among people with low vision and their families--and it was wrong.
Another thought haunted me as I began to write in a journal about my feelings about my blindness. I couldn't shake the feeling that if I lost my vision I would become passive and uncommunicative. I might become like Laura.
Laura was a classmate when I was in elementary school. I had known on her first day of school that something was wrong. I knew because the teacher talked to her differently. Laura was two years older than I, but our teacher spoke to her as if she was a very young child. She used very simple words as she led Laura around the room and explained the layout. "We have a new student," she whispered to me. "She's totally blind."
So that was it! Laura was totally blind! ... My definition of "totally blind" was formed immediately. Twenty years later, after meeting many totally blind adults who lived full lives and after coming to understand that Laura's additional disabilities were more disabling than her blindness, I still could not let go of the irrational fear that I would become like her.
I was ashamed of this thought. Not only was it incorrect, but it also insulted Laura. She had been my friend for four years. I had helped her learn to write her name in braille. I had cried when she moved away to attend the state school for the blind. How could I think such things?
Gradually, as I spent several months living as a person who was totally blind, I came to understand that I did not change. I did not lose my ability to converse or to travel independently or to write well... I lost the fear of becoming like Laura, but I had to experience blindness before I could lose the fear.
Surgery restored my small bit of vision in December, 1998. Several months later, as the new cornea began to decompensate, I began to lose my vision again. When it was gone, the old fears returned. I was surprised but not unprepared. Realizing that some of those 20 losses affect me has given me freedom to allow myself to grieve. Grief diminishes in time. I also now feel the freedom to seek treatment. Only time will tell if another transplant will benefit me, but whatever happens I know one thing. I may become a different me, but I will still be me.
Alexander, S. H. (1994). Taking hold: My journey into blindness. New York: MacMillan.
Beach, J. D.; Robinet, J. M.; Hakim-Larson, J. (1995). Self-esteem and independent living skills of adults with visual impairments. Journal of visual impairment & blindness; 89(6), 531-540.
Carroll, T. J. (1961). Blindness: What it is, what it does, and how to live with it. Boston, Little, Brown
Cholden, L. S. (1958). A psychiatrist works with blindness. New York, American Foundation for the Blind
Holbrook, M. C.; Koenig, A. J. (1992). TEACHING braille reading to students with low vision. Journal of visual impairment & blindness; 86(1),44-47.
Hudson, D. (1994). Causes of emotional and psychological reactions to adventitious blindness. Journal of visual impairment & blindness; 88(6). 498-503
Putnam, P. (1997). Love in the Lead: The Miracle of the Seeing Eye Dog. New York: University Press of America.
Schulz, P. (1980). How does it feel to be blind? Van Nuys, Ca.: MuseEd.
Tuttle, D. W. (1996). Self-esteem and adjusting with blindness. Springfield: Charles C. Thomas
Willoughby, Doris and Duffy, Sharon L. M. (1989). Handbook for itinerant and resource teachers of blind and visually impaired students. Baltimore: National Federation of the Blind.
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