LIVING WITH STARGARDTS DISEASE

Kelly's Story

My name is Kelly, and I was diagnosed with Stargardt's when I was about 16, but really didn't know what that meant until I was in college.

I am now 24 and live in Lexington, South Carolina. I started wearing glasses when I was 6, so I don't remember ever really having great vision. That could be a blessing.

When I was a freshman in college, I was majoring in Education, and I began to notice that it was becoming impossible to see chalkboards, overhead projectors, etc. When I went to my eye doctor he told me that my disease had begun to progress. My professors were very understanding, and helped me in any way they could. I transferred to the University of South Carolina to pursue an emphasis in mathematics, and found that a larger school was very difficult. One professor in particular told me I would never be a teacher because of my eyes. I was devastated and dropped out. I ended up going a Technical College for almost two years, majoring in Business. I was bound and determined not to let my disease get the best of me, and it took me a long time to admit that I needed help with my vision.

My Aunt got me in touch with a man from the Commission for the Blind, and we began to search for a career that was right for me. I thought I had found it in Massage Therapy. Here was something I could do without relying on my vision! However, this is a hard job to do full-time and make a living at. I now am looking into becoming a Medical Transcriptionist.

Coping has been a very big struggle for me. For a long time I didn't want anyone to know, because I found that many people treated me very differently when they found out. I have always been very independent, and did not like the fact that sometimes I need help. Luckily, I have the best parents in the world. My mom has been so wonderful in supporting me through whatever I wanted to do. I cannot even begin to count how many times she has been there for me to cry with and be angry with.

In December of 2001 I got married to a wonderful man. He is so supportive, and does so many little things that mean so much. For instance, he always reads the subtitles, location lines, etc. for me when we go to the movies, even though we get a lot of "shushes" from those around us. I am still driving to and from work, but Derrell (my husband) is always willing to drive me anywhere, even if it means leaving his job to do it.

We recently learned that I am pregnant, and while I am thrilled, I am also very scared. I want to be a great mother, and I want my child to be proud of me, not ashamed. There are so many unknowns right now, like if I will still be driving when the baby's born, if I trust myself to drive with my child in the car, stuff like that. I know I have to trust God with these things. He has always provided a way, even though over the past few years I have doubted Him. I know in a sense I am lucky because I am still driving, and I still have one eye that for some reason is not as affected as the other. Still, it's hard to remember that when you can't recognize someone when they wave at you from across the room, when I have to use a magnifying glass to read labels in the grocery store and people stare, and when I think about not being able to read a book to my child or, if it's a girl, not be able to paint her fingernails because I can't see them well enough. Those are the hard days, when all these thoughts run through my mind. I know I'm not alone in this struggle, and I also know many seem to have an easier time dealing with these issues. Please tell me how.

I wonder if I will ever become comfortable with my condition. Does anyone else fell this way? Please email me and let me know how you cope. My email is kellylamb@sc.rr.com. Thanks for reading my story.

Kelly

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