Talk RP to Me

“So do not fear, for I am with you; do not be dismayed, for I am your God, I will strengthen you and help you; I will uphold you with my righteous right hand”. Isaiah 41:10

So, I guess since this whole blog was inspired by my experience with Retinitis Pigmentosa, I should probably give my readers a little more insight into the disease.

Retinitis Pigmentosa is a hereditary eye disease that causes damage to the retina, the tissue that lines the back of the eye. This tissue plays a large part in enabling you to see due to the presence of light sensitive cells called photoreceptors. Light enters the eye through the pupil and travels to the retina where photoreceptors are responsible for absorbing the light and then converting it into electrical impulses that travel into the optic nerve. The optic nerve carries those signals to the brain where it produces the image we perceive. There are two types of photoreceptor cells in the eye: rods and cones. The rods are responsible for peripheral and night vision and are located on the outer portion of the retina. The cones make up the central area of the retina and are responsible for our central vision, seeing fine details and colors. As RP progresses, damage occurs to these cells, diminishing their respective functions. RP typically impacts the rods first. This damage results in tunnel vision and night blindness. In the later stages of RP, it moves to the cones causing decreased ability to see fine details and decreased contrast sensitivity.

As with any disease, RP is not “One size fits all” and as a matter of fact, each person in my family who has RP has had a different experience with its progression. Thankfully, I am just now beginning to “see” my deficits. Up until the last 4-5 years, I kind of “forgot” I had RP. I always knew it was there but it was something I ignored. I’ve always been the type of person who sweeps things under the rug, thinking that if I ignore it will go away. But the little changes I’ve seen in the last few years have me tripping over that lump in the rug (pun intended…I trip a lot). I’ve come to a rapid realization that this is my reality; this is something I will have to confront head on if I want to continue to live a functional and fulfilling lifestyle as my vision loss progresses.

I think a large part of why I have been so hesitant to “own” my RP and to write this blog is because I don’t want people to look at me differently. I don’t want to admit to people that I have something wrong with my vision and to be honest, I don’t want those looks of sympathy. I don’t want people to think I’m incapable of parenting or question my ability to complete my job. I don’t want my friends to get in a vehicle with me and be worried about their safety or have anyone doubt my ability to safely transport my child. Other than bumping into things here and there, I’m pretty darn independent and incredibly able. I’m grateful for the vision I still have, but I know there will be a continued grieving process throughout my entire life as my vision loss progresses. For right now, at least, I’m approaching the acceptance phase.

I’ll be honest though, as much as I say I’m working on that acceptance phase of my RP, these days, there are times when I hate to even read research articles or read about RP, despite the promising research.

It is SO easy to get “in my feels” about it. I worry about my husband, I worry about my son, I worry about not being able to be the maternal and providing figure in my family. But then, as I am deep in these negative thoughts, I get this wait a damn minute moment. I look at my mom and how beautifully functional she is. I look at the selfless love and care she provided (and still provides) to my sister and I. I look at the loving and devoted wife she was and still is to my step-dad. All of her best qualities have NOT A DARN THING to do with her ability to see or not see. When I realize this, I am so much more motivated to live life day-by-day and appreciate the vision I have. I take in the colors of a field of flowers a little more, stare a little longer at sunsets, look into my husband and son’s blue eyes and etch those sights deep into my visual memory. With or without vision, I am so much more than my eyesight alone and I will move forward without fear because I know this is God's plan for my life even though I may not understand it right now.

In my coming posts, you’ll be seeing how these symptoms have affected my life through some very personal experiences. Emotionally, some posts may be harder for me to write than others, but I hope that my ability to share these stories will resonate with at least one person.

For those of you reading who are unfamiliar with Retinitis Pigmentosa, I hope this gives you a unique perspective on this disease. For those of you with RP, we are SO much more.

All my love and then some,

Ali

For more information on Retinitis Pigmentosa, please go to www.fightingblindness.org