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Rose at 16 years of age - highschool Well, it is White Cane week (Feb 4th - 8th) and Retinitis Pigmentosa Awareness month. I would never thought in a million years that this would mean anything to me or even know what it is. At least not until I was 16. About an hour ago, I was watching a show called E60 and there was a program about different runners with different reasons to run. Sami Stoner a teenager from Ohio was one of them. Her interview was really good and very emotional for me to watch. It all came back to me thirty two years ago. While listening to Sami's story, suddenly my vision was like looking through a thick glass, blurred with tears, and her words started to jump out at me. Diagnosis, fear, independence and anguish. Listening to Sami was like listening to myself talk 32 years ago. It truly stung me. I saw Sami's parents pain in their eyes as they talk about Sami, their tears and my tears flowed and I realized, that must of been the same for my parents, their grief must of been unbearable. I was 15 when I told my mom that I was having trouble seeing in the dark. I was out with some friends and we went rollerskating, and drinking (I never told my mother that part). I did not have too much to drink but the others were a bit drunk and we were walking home and there was this low chain link fence (about knee height) and we were swaying and walking and then suddenly, my face was on the ground and we all were laughing. Right away, I got up and continued to be jovial about my clumsiness. But inside my head, I knew something was wrong because I noticed why did I fall and no one else did? They had way more alcohol than I did, it didn't seem right. A week later, I told my mom. Again, not telling her that alcohol was involved. Next thing I know, I was being taken to the eye doctor and then was recommended that I should see a specialist. For some reason, I did not think anything was seriously wrong with me. Within a few months just after my 16th birthday, both my parents and I went to Vancouver to the UBC Eye Center. It was such a long day of tests, some tiring and some painful. The next day was only two appointments: one with a Genetics councilor and the other was a Retinal specialist. I remember so little that day. I heard the words Retinitis Pigmentosa several times, Ushers' Syndrome, blindness, tunnel vision, night blindness, and hope. Hope? What?! I am going blind?! This can't be! You see, I was born with a moderate to severe hearing loss, so I don't know what its like to hear like most, so it is something I had lived with all my life and it was no big deal. But I'm going blind? Where is the hope in that? Sweet 16, my life is still young, I want to get my driver's license, want to experience so many things, to go to university and to travel. I think I shut down for several months after that diagnosis. I don't really remember much of my 16th year. My mother was already planning for my future, looking for 'blind friendly' jobs that I could do. Mom found the perfect job, a secretary. She said, "you can learn to type and you do not need vision to see the keyboard." I remember thinking, 'wow, how much time do I have left before I go blind, so I guess this would be my only option? It is safe career and I wouldn't be able to do my dream job anyway.' Wait! Hold everything, I wanted to be an archeologist, go to Egypt and Europe to discover artifacts, study hieroglyphics and other languages. Dreams are now shattered. I felt my life was over. I am going to end up living my life as how a woman should live like in the 50's. But something inside of me says its not. So my life begins... Hope, I remember now, the doctor did say, there is always hope that you may not go completely blind and there is hope for a cure one day. That was 1981.
5 Comments
Chris
2/2/2013 11:25:29 pm
Can I just 'ditto' Andrea's comments ? Maybe add one simple fact, if you didn't have Ushers you may have gone to Egypt and become an archeologist. But part of me thinks how many more people read your blogs and think to themselves, if she can be such a positive role model then maybe I can too, You continue to inspire many and not all of us suffer from anything more than old age and a lack of hair. You do an incredible don't stop...
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Yvonne
2/4/2013 12:23:06 am
I cried:)
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Nora
2/2/2016 07:42:04 am
You are an inspiration, I am very blessed to have you as a friend. If not for RP that would not be. So RP is a blessing in many ways too. IMHO anyway <3 you Rose!
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Rose
2/2/2016 09:10:19 am
Thanks Nora!! This how I see, it....even though this bad thing happened, diagnosed with this disease, you are part of the good thing that. happened. Like so many things in my life. My love, Chris, my daughter Emily, and. my friends xx I. love. you too.
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