|
RP: Two Letters Brought Siblings Closer
My name is Kelley Hartmann and my family is affected by X-linked Retinitis Pigmentosa (RP).
 |
| Kelley Hartmann, center with family |
At an early age my brother was diagnosed with RP. At the time I did not know what RP was, I never heard of it before. Judging by the tone of the diagnosis from our family eye doctor I knew it was not good and I was scared and nervous for my brother. Our doctor recommended we see a specialist and referred us to Mass Eye and Ear. I remember vividly the first time my brother and I went to Mass Eye and Ear for testing when we were still little children, we were both nervous and frightened, but we had each other. It was comforting to have my brother at my side, and me at his... we were in it together, we were a team.
The doctors at Mass Eye and Ear performed many tests on the both of us that day, most of the test were painful, as the equipment was designed for adults sized eyes, not children's. It was a long and trying day for my family.
Once the results came in the doctor talked to my mother, dad, brother and I and he confirmed that my brother had RP and informed me that I was a carrier with symptoms. The gravity of the situation was not lost on me even as a child, we all knew he was going to lose his sight and be blind some day.
It has been heartbreaking watching him become blind. It started out slow; he would bump into walls around our house or trip over things in the backyard. That was just the beginning, it got worse and by the time he was 21 he lost his license and at 27 he was legally blind.
Since college my brother has lived in Boston. He loves Boston, but I can't help but worry about him and how he gets around. He's been hit by bike messengers as he's tried to cross the street; if people move large flower pots around on the side walk in the North End he walks into them and has cut his knee open. One time at work he even had an elevator close on his face which required him getting stitches on his nose.
In the grand scheme of things, my brother has a lot going on for him. He is smart, very funny, attractive, a devote friend, and an avid sports lover just to name a few. Today he is legally blind; he can still see a tiny bit which helps him get around on his own still that in itself amazes me. However he is totally night blind, which can be hard for an active guy who likes to go out at night with his friends. Sometimes if he's in a dimly light place he'll accidentally bump into people and they will get mad at him because they don't know he's blind and they'll think that he bumped into them on purpose. Most of the time people think the worst about people, like he is starting trouble rather than thinking maybe this person needs help. One time he was even not allowed to go into a restaurant because they thought he was intoxicated, but really he was looking for the sign and door into the restaurant, it's difficult when people don't try to understand. I make sure to be as supportive as I can and always be there for him, whether it's with filling out a form or just being there for him to talk to. I myself have had my own struggles with sight loss. I don't drive at night; I mistake boots for my cat sometimes, I have difficulty telling a dark blue dress for a black one, etc... Since I am a carrier with symptoms I know how RP works, and it is scary. In a way I already know part of my future. I can look forward to having worse eyesight, possibly being legally blind myself and not to mention that fact that I may pass this disease onto any children I have.
My brother and I love the Red Sox. If you've ever been to a game, you know how crowded Fenway Park can be and how many people are walking around the park. It's for this reason my brother stopped going to games years ago, as he didn't want to keep walking into people and have people get upset with him. It is my dream to one day take my brother back to Fenway for a game and say to him "did you see that home run?" and he says back to me "yes that was amazing".
I've decided it was time for me to join the vision walk: for my brother; for me; for my future children; and for all of those who are affected by blinding retinal diseases. I am the North Shore Coordinator for this year's Boston VisionWalk. On October 29, we walked at Soldiers Field, Artesani Park. Our team raised $6,125, are looking forward to next year’s VisionWalk.
I could not think of anything more appropriate than to join my brother, my teammate for all of these years and together form Team Hartmann. Just like our first time at Mass Eye and Ear together as children, we are a team and we will see this through.
|
|
