RP & Me

“She is clothed with strength and dignity, and she laughs without fear of the future”. - Proverbs 31:25

Have y’all ever had those “light-bulb” moments in your life? You know, the ones where you’re standing waist deep in a pile of laundry pondering life and all its meaning? No, just me? Well, that’s how the idea of this blog got started. One Sunday, I was standing in our bedroom folding way too much laundry while my sweet 7 month old son was downstairs sleeping on the couch with my husband. And, PING! (that’s my light bulb noise), I had the idea for this blog.

In order to bring this full circle, I should give you a little backstory about me. For those of you reading this, who are not family or my best friend, Samantha, let me introduce myself. My name is Ali. I’m a 30-year-old Christian girl who has the world’s biggest sweet tooth and a southern accent. I am happily married to my handsome husband, Matt. We have a perfect 19 month old son, Grant Allen and a rambunctiously, adorable Goldendoodle named Murphy. I’m an Occupational Therapist in a local retirement community where I have the opportunity to work with some pretty incredible clients and coworkers. I sound pretty normal, right? I’m 5’1” with brunette hair, hazel eyes, and a few extra pounds. I’m a career-driven, married woman. I’m a mom with goals, dreams, and a boatload of student loan debt... I digress.

Looking me eye to eye, which is pretty much all you can see in our new mask-wearing world, other than wearing glasses, I look pretty normal. What you don’t see is lurking beneath. You see, I have an eye disease, which with time, will eventually lead to blindness. Womp, there it is. I said it. Yes, blindness; the absence of light and all that may entail. It’s kind of an intimidating word isn’t it? The culprit, you may ask? Retinitis Pigmentosa, or as I will not so affectionately refer to it: RP. RP is a hereditary eye disease that damages the retina causing decreased peripheral vision, night blindness, increased risk for cataracts, and so on. (I’ll go into more boring details about that in a later blog post).

I was diagnosed with RP at a very young age. My mom always said that when I was a baby, they could tell that my eyes were not as strong as they should be. I couldn’t see things in the dark and something just felt “off”. Because RP is hereditary, they kept a close eye on my vision. I grew up consistently going to the eye doctor, getting glasses at age 4, and constantly hearing about this diagnosis. I’ve spent a very large part of my life in denial that I have something “wrong,” that my vision is different than others. I’ve tried to hide it, often laughing it off when I trip over the obvious.

Recently, I’ve done a lot of soul searching and in the past years, I’ve decided to own this. I’ve decided to define my RP, not letting my RP define me. I’m not writing this to search for a pity party by any means. (The only parties I want to go to right now have a good cupcake and an even better glass of wine). As much as I want to lift up others, I’d be lying if I said part of this was not for myself. This right here, this blog, opening up to people who don’t know me from Adam, and telling them everything that’s wrong with me makes me feel incredibly vulnerable yet liberated. Honestly, that’s probably why this blog has taken almost a year to come to fruition.

A large part of who I am, which I hope you will come to see throughout my posts, is based on my faith that God has not forsaken me or “damned” me to a life of blindness because of this diagnosis. Rather, I feel as though God has given me this as a way to connect with others and turn something grim into something beautiful, or in the words of my coworker, Corey, I’m “finding a daisy in the dung pile.”

As you read this, please don’t let me deceive you, I am not blind. I am fortunate enough to be one of those with RP who has had this diagnosis for years but I am still able to live a fulfilling and functional life. I am gainfully employed, I drive, and grocery shop. I get outside and walk and run. I get to actively parent my precious 19 month old, chasing him everywhere….no really, EVERYWHERE. I am incredibly blessed but also incredibly aware of what I face losing in the future.

In the coming posts, I want to introduce you to my mom, my biggest inspiration for embarking on this blogging journey. At this point in her vision loss, she is almost completely blind but she is absolutely amazing, as you will come to see. She is so excited to be involved in this blog and help share her story. I plan on having posts by her called “Deb’s Corner” that will show up in my feed for another unique perspective into vision loss. I also want to share with you stories from my other family members who have Retinitis Pigmentosa, who are all in different stages of their journey with RP. I want to share tips on how to make life easier with vision loss (my OT head and heart will be a driving force in this blog as well)- you can find these tips and “life hacks” in the section titled “Living with Vision Loss”. I want to share laughs, share tears, struggles, and fears. But what I want most of all is to be real with you all because after all, I am more than RP.

All my love and then some,

Ali

P.S. I promise this will be my longest post. Thanks for hanging in there!