When my message require serious reflection
MY STORY WITH RP
I’d like to be serious for a change.
In support of this month, I thought I’d take a few minutes to share my story.
For years I lived as if I didn’t have RP. By that, I mean that I didn’t accept help even from those who knew. I was going to be independent no matter what. I preferred for people to think I was clumsy or scatterbrained than to admit that I had a degenerative eye disease and was slowly losing my vision.
I didn’t even know what I was losing until it was gone. For example, early on, I couldn’t see things at various heights. All of a sudden, I was getting stitches in my forehead. If it wasn’t stitches, it was huge bruises. Stairs were also difficult for me. I don’t know how many stairs I tripped up and down when I lived in Taiwan. When I was teaching Spanish, I was preparing for class and realized I couldn’t see the accent marks anymore. The type of RP I have is so gradual that it can almost fool you into thinking it’s not really happening.
Until something else is gone.
Even when it got so bad that I needed a cane, I couldn’t accept that about myself right away. I folded the cane up most of the time, or “forgot” to take it with me. There were so many aspects I had to work out within myself. It’s been a long journey in accepting that I have this disease and that it’s okay.
Somehow with my faith, I resolved it in myself because the time came when I stopped being reticent and started writing what my life was like with RP. Magically, my attitude changed and I found joy and humor and laughter in my predicaments.
So many people helped me along my journey. A word of encouragement here or there. They gave me positive advice. They pushed me forward. Little by little, I became an advocate for RP awareness. I’m not sure how that even happened.
It stopped being some terrible secret I had to bear alone.
I thought this video would give you a little better awareness about RP. This video was made by Jackie Meek, the moderator of our RP Facebook Support Group page. She tirelessly encourages and educates others about this disease .
Over time I’ve come to the conclusion that RP itself is not cruel. We have good and bad days, of course. But everyone struggles with something and has to adapt to meet those challenges. What I’ve learned through my journey is to cultivate joy in whatever life circumstance you find yourself in. Offer encouragement and understanding where you can.
This next video is a short but very encouraging video clip put out by the Foundation for Fighting Blindness. Please take a few minutes to view it.
Finally, please share these videos with your friends to educate others about RP.
The more people that know about it, the less of a gap of understanding there is between the sighted and those with RP–those losing their vision.