by Margaret Kickert
(Reprinted with permission from the Washington Council of the Blind "Newsline," March 2005.)
Is this really happening to me? How will I cope? What will I do? Will I be able to live a relatively normal life? How can I tell anyone? Can I hide this or shall I just stay at home and hibernate? I'll never be able to drive again and I am totally dependent on others. Yuck!
These thoughts, along with fear, fright, sadness, loneliness and depression, were some of the thoughts I had when it was first confirmed that I was losing my sight. Last year when the doctor told me to get ready/prepared for vision loss or blindness, I had mixed emotions of anger, distrust (surely there must be something to help me) and fear for the future. My retinitis pigmentosa had gotten worse and was no longer stable, as it had been for years. My friend Lucy had gotten cancer several years ago, and wrote about how she had to walk in "cruel shoes." Now I felt that those cruel shoes had been given to me, and that it would not be an easy walk!
Since I did not get RP until 1986, I had managed to work and deal with it, and was always glad when told it was remaining stable. Now the doctor told me that my visual field was severely diminished and that I should start preparing myself for blindness or severe vision loss. This confirmation was so upsetting that I just wanted to stay in the house, crawl under the covers and be by myself. After all, who would want to be around a "blind person," or who would want to go to lunch with me when I fall over or bump into things and embarrass them and also myself? "Be careful," they all say, "didn't you see that?" and "you just have to take it slower." Worse yet, what about my relationship with my husband? How will he be able to stand living with this clumsy wife who at one time was so vivacious, energetic and independent? Now I had lost so much and felt so alone. I never really knew anyone who was blind, nor did I even have friends or family members who were dealing with vision loss. It was a sick feeling. How could this actually be happening to me? I wanted to be alone and away from everyone.
After crying and thinking about it for several days, I felt I could not keep up my usual activities. I dropped out of things and said "no" to more activities and groups. I felt I was being a burden, especially to my spouse, but how else should anyone expect me to feel? After many weeks, it felt strange that I was isolating myself and I thought that I had as much right to a good life as the next person.
Remembering the strong personality I had before this shock, I decided that I would not give up life just because I was losing my sight. I started to join groups again and tried to have fun. It was not always easy going, and not everyone was accepting of my vision problem, but now it was easier for me to see who my real friends were, and that was a wake-up call. Many people did not even seem to care about, nor were they interested in, people with vision loss. Even though I felt alone in many situations, I realized that I would need to be my own advocate, trudge ahead, and start to think of resources to help myself.
Luckily, I remembered the Edith Bishel Center for Blind and Visually Impaired here in the Tri-Cities area. I called them and made an appointment for my husband and me. I still felt so alone and lost when we went down there, and was just miserable. The director, Larry, was very encouraging and while we were there, he introduced me to Bill Hoage. He explained that Bill has my same eye disease and had just recently lost all of his sight. Ah, that was the first person I ever met who had RP, and it felt good to meet and talk with someone who could share my problems.
Even though I still felt miserable, I thought maybe there was some hope for me after all. Bill was very outgoing and encouraging during our conversation. I couldn't believe he could be so happy and also be blind! He invited me to the United Blind of Tri-Cities breakfast the following Saturday. Now, "why would I want to go to a blind group?" and "how can I get out of this?" kept popping into my mind. However, my husband thought that this would be a good start and encouraged me to attend. I said I would try it and I was so surprised to find myself in a roomful of blind and visually impaired people. But they all seemed so caring, open, friendly and capable of getting around and doing things that I could not resist feeling that finding this group could maybe, just maybe, be a real blessing for me.
Oh, I was ever so slow to accept their invitation to go to lunch with them, as I was still hoping this vision loss would go away. You see, I still have a little bit of central vision left, so I wondered if I should really be with this group! But my husband encouraged me to keep attending the meetings and we kept talking about all of the things I could learn from these folks. By the second month, I decided to join, and slowly I could feel that this group was truly accepting, welcoming and the group for me.
Finding the Edith Bishel Center in Kennewick and the United Blind of the Tri-Cities has been a great blessing for me. I am ever so thankful to Larry, Bill, and everyone else who was so accepting and took me under their wings. Diana and Rosemary kept calling me and inviting me to future events, and gave me the feeling that it will be OK to have this vision loss and that yes, I will be able to survive just fine and maybe, just maybe, live a full and active life.
I have found some great friends in the United Blind and Edith Bishel groups, have learned so much from them, and am continuing to learn more from them all the time. This has helped me to accept my new problem and deal with it a bit better. Oh, I still have some down days, or times when I feel so lost. I know as my eyesight worsens, I'll still be facing some difficult times ahead. Naturally, I would like to keep the small bit of central vision that I have, but I realize that it can diminish or be gone quickly, plunging me into total darkness. I realize that I must now get ready for the next steps, such as cane training, etc., and that I will have other hills to climb. I'm learning to face reality, and that I will need to make changes in my life, accept new challenges, adapt to new things, but that I will somehow manage to walk in those cruel shoes! It just might not be so bad after all.