Stalked by RP

When Reality Intruded on My Denial

Image from loritataylor.com
Image from loritataylor.com

35-Day Blog Challenge- Day 3

My diagnosis of Retinitis Pigmentosa (RP for  short) was a blessing and a curse. It explained why I had so many fender benders early on and gave me a legitimate reason for not seeing well at night. I was the only one in my family who had this genetic disease. I don’t think anyone else was tested but it was clear I was the only one affected. No one else tripped or fell over nothing or had trouble seeing at night. The specialist couldn’t say “when” or “how” or “why” because these factors differed with each one who had it.

Gradual vision loss is deceptive. Once I learned that I wasn’t going to lose my vision overnight and it didn’t impact me immediately, I could fool myself into thinking  the “down the line” would never reach mePerhaps it was the kind of eye disease that had a light strain, and if so, I had it. Going blind gradually was more of a nuisance than a life-altering diagnosis, I told myself.

Gradual vision loss is deceptive. I could fool myself into thinking the “down the line” would never reach me. –tweet this.  

After I got past the initial melodrama of “going blind” in my own mind,  it was just something I filed away.  That wasn’t the type of thing I shared with many people, and the list of who they were dwindled in the years that followed. Their extreme reactions were hard to cope with.  Either it was met with a long silence and then an awkward, “I’m sorry. I don’t know what to say. You poor thing!” I hated that. But the other response was just as bad. “You’re making that up for attention.How can you be going blind?  You’re looking right at me.” I heard the accusatory tone, the disbelief, and the final rejection: “You don’t look like you’re going blind.”

So I did us both a favor and kept my RP to myself. I continued with my teaching career overseas. I knew deep inside that there was a basis. A doctor had told me there was no cure and it was progressive. But how could I be going blind? I could still live my life.I didn’t know what I wasn’t seeing. My brain filled in the missing parts. I went into a kind of wavering denial.

RP was like a silent stalker. When I turned around, I couldn’t see it plainly. It slipped in and out of the shadows for years.

Once in awhile, it brazenly reached out and grabbed me. For that second, my heart thumped out a rhythm of panic  I could feel its strong grip and then with a sinister and cruel laugh, it disappeared–almost as if I imagined it. It was only by feeling the imprints of it on my skin that I knew it was a real entity following me.

Sporadic eye exams showed progression. My car accidents increased and became more serious. The fear that I would injure someone else or myself irreparably made me finally stop driving. But even that was bearable as I could use taxis in my insulated world overseas.

When I finally returned to the United States to live and the pace of my life slowed down enough to notice the RP stalker was no longer stealthy. Instead it became much more brazen. It walked alongside me and constantly attacked me, even in broad daylight.

That’s when my friend said, “Do something. Get. Help. Just do it.”

“Down the line” had come.

I couldn’t ignore or hide it any longer.

I could finally see that I couldn’t see a lot.

Had the stalker finally caught me?  Was I in its rough and dangerous grasp … or would help come?

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Have you ever been stalked by something you can’t throw off but which hasn’t made its full presence known to you? 

You have just read “Stalked for Years by RP?” by Amy L. Bovaird. Copyright September 15, 2015. To learn more about Mobility Matters, click HERE.

 

Stalked by RP
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5 thoughts on “Stalked by RP

  • September 15, 2015 at 5:29 pm
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    You write about your affliction with such clarity, Amy. I can almost feel the effects. My darling husband has just lost most of the sight in one eye. He only noticed the other day although he’s had difficulty reading for about six months. He’s been told it could be a symptom of C.
    I love to read about how you’re coping. Hugs.

  • September 15, 2015 at 6:08 pm
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    Thanks, Francene.
    I will be praying for your husband. It’s such a challenge on top of everything else!
    Amy xx

  • September 15, 2015 at 7:46 pm
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    I am also haunted by the thought that I could go completely blind one of these days and that terrifies me. Seeing, or not seeing as the case me be, is a really complicated thing. People think you either see or you don’t, but that is just not true.

  • September 17, 2015 at 2:13 am
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    Amy,

    Wow! To answer your Call-to-Action/Call-to-Comment (CTC) — The only thing that stalks me is the double mastectomy I had.

    I know I will never feel my breasts again. That has taken 7 years to accept. And, so I do understand loss from that perspective. I don’t want pity, that is the other thing, too!

    But, needed only going attention and lifestyle change were of the essence as were about 4000 PT hours (4 hours a day at first). Then, spending nearly 2 years to uncover other ways that contributed to the pain and healing those.

    So, I guess my learning as I reflect on your journey and my own is that it is an ongoing adjustment and you can’t dwell on the loss. However, you can benefit from small and big wins in dealing with it! 🙂

    Many blessings to you, Amy! You make me truly appreciate all I’ve got, even the parts that have stalked me! 🙂

  • September 19, 2015 at 4:43 pm
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    Hi Shannon,
    Thank you for being open and taking time to be real with me. Overcoming loss is, at times, excruciatingly difficult. What a huge ongoing adjustment for you–and for me. Though our challenges differ, our responses are similar. I love your point about how you can “benefit from small and big wins in dealing with it!” That is so wise and true. I have small wins frequently and now and again a big win comes along.
    Thank you for your comment. It encouraged me right back!
    Amy

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