Fearing The Darkness

Since i was a little boy, i was always afraid of the dark! I couldn't see well, i'ld try to found my way by touching things around me. I was and still very sensitive to light, i have trouble finding the right brightness for my pc to work on! I was and still a little bit clumsy, sometimes i don't notice friends that pass by me! I always felt, a little bit idiot, or weak! I was almost 10 years old when i become having trouble with my vision even during the day. I went to many doctors, by the way my older sister had the same problems, so we went to many eye doctors, but they couldn't define the problem! Finally, one doctor had the intelligence to run a field vision test, he remrks that we are loosing our peripheral vision. So he makes some another analyses, like the eye angiogram, and than all come clear! But they didn't tell us anything! My parents prefered to keep it secret! This was a very wrong decision, because when i found out by mistake, it was a devastating surprise! I found out i have Retinitis pigmentosa a few years ago, i was surfing the net and i found this site, fighting blindness, they enumerated many symptoms of the disease, i was like Oh my God! that could not be true! I run into my mother (my father died a few month after the diagnosis, i remember he was very sad after our visit to the ophtalmologist, he was a very sensitive man, and now i think he felt guilty since this disease is hereditary), so i asked my mom what is my eye disease, is it Retinitis pigmentosa, and that's when she told me! I shouted and cried thinking oh my God, i am going to be blind! How am i suppose to live? What will i do? I'll become disable. i won't be able to drive (actually now i can only drive during the day). And what really upset me is that i am studying cartography (i am preparing my PhD now), and i really need my vision for this science!
I visit my ophtalmologist oonce a year now to monitor my situation, my vision is stable for the moment (it is not the case for my sister, she starts to lose her vision) i can see her falling into darkness, i feel very sory for her, and deeply afraid that i might follow her! I don't know what to do?! Especially in my PhD, i don't know if i should continue in this domain or if i should persue a field of study that doesn't count on vision so much! I am sad, confused, scared and disappointed! I have always worked hard, harder than my colleagues because of my vision issue, and now i see that my work could be in vain!
This is difficult, i really need some advice!
An Ep User An EP User
2 Responses Jan 18, 2013

Hello!!! I am 46 years old and I was 17 years old when I found out that I have RP. I also have a hearing loss since child birth too. It has been very aggravated at times. I quit driving at night a couple of years ago because it was getting harder to see at night. I still drive in the daytime but be very careful. I look at all directions before pulling out. I had cataract surgery in both eyes when I was 40 years old. It doesn't help the RP but it does help seeing things clearer not the side vision. I am married to a wonderful man of 15 years and we have a beautiful 13 years old daughter that is my heart and helps lead me the way when we are out in public. I have recently got my disability because it was getting harder and harder. I worked for 26 + years. I prayed about it and felt like that is was the best thing for me to do to file for disability. I'm so glad that I found this site and you are the first person I responded to. I felt like I needed to talk to someone that is going through what I'm going through with RP. Hang in there I always tell myself that I am very thankful for what sight I do have and that it could have been worst. Take care of yourself and hope to hear from you soon.

Thank you for writing this. I`m a med student writting a report on RP. I can never realy imagine what you are going through, nor shoud I. But know that in the small act of writing you have help 120 med students to understand the human side of the disease. We can`t read this in text books.

P.S. We are all afraid of the dark it`s the human condition.