Straight Talk

When my message require serious reflection

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MY STORY WITH RP

RP is an "invisible" disease with no outward signs of vision impairment

I’d like to be serious for a change.

February is Retinitis Pigmentosa (RP) Awareness Month.

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 .

http://www.youtube.com/watch?v=HYXuKGq9THA

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.

Choose joy.

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.

http://www.youtube.com/watch?v=Rp7bSLLLu-0

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.

Here I am with my cane!
My Story with RP
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9 thoughts on “My Story with RP

  • February 26, 2014 at 8:38 pm
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    Thank you for sharing your story, Amy. I am so glad that you are not bearing the secret alone anymore.

  • February 26, 2014 at 11:31 pm
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    This is the first time I’ve heard of RP, Amy. Thank you for sharing your story and for what you are doing to bring awareness to others.

  • February 27, 2014 at 12:23 am
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    RJ,
    =) My life is so much better now that I’ve come to terms with it! Even though my days of seeing are becoming more limited, I’m not as afraid. I’m able to roll with changes more. I know if I choose joy, it won’t keep me down. God will always lift up my spirit.

  • February 27, 2014 at 12:26 am
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    Melinda,
    So glad I shared it! That I’m reaching more people is encouraging!
    Amy

  • March 19, 2014 at 12:27 pm
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    I’m also a writer with RP (more specifically, Usher Syndrome II). It’s so nice to know that I’m not alone with these struggles! 🙂

    Carrie

  • March 23, 2014 at 12:15 am
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    Hi Carrie,
    How wonderful to hear from you! What kind of writing do you do? Would love to hear more from you!
    My email is abovaird@verizon.net
    Sorry in the delay in finding this and responding. My blog goes down from time to time.
    Please check back. It’s up and running again. =)
    Amy

  • March 28, 2016 at 8:51 pm
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    I LOVE your writing Amy!!! You are so honest in where you are with accepting RP and then how you have made a conscience choice…to find the JOY and humor in it all. Not to say that it is easy…we do have our good RP and bad RP days for sure…but overall…choosing to advocate and live with joy…simply beautiful. I love that you said, “Little by little, I became an advocate for RP awareness. I’m not sure how that even happened.” – That is God working in you…guiding you on your journey…you didn’t even realize all the amazing-ness you would be doing for our community!! So beautiful! Thank you!!! Sending you a big hug from St. Louis!! 🙂

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  • October 22, 2016 at 2:33 am
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    Hi Jena,
    You are really quick today putting this up today!
    Thank you for allowing me to share my story with your readers.
    Amy

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