There's Your [Wet Floor] Sign

“For we walk by faith, not by sight” -2 Corinthians 5:7

Y’all, if there are any bones in my body that are harder than my head, it would be my shinbones, or as we call it in my OT world, my tibias. I will occasionally sit in the floor and rub over the ridges that have not-so-delicately been etched into them from my unexpected collisions with drawers left open, the dishwasher door left down, a concrete fire pit... you catch my drift.

RP has this nasty habit of taking your peripheral vision, causing tunnel vision. Imagine looking at life through toilet paper rolls, that’s what Retinitis Pigmentosa does to your vision. I saw a meme not too long ago that made me laugh out loud. It read “Having Retinitis Pigmentosa is seeing a pencil from across the room but tripping over an elephant in order to get to it.” I’ve never read anything more accurate in my life.

If any of you reading this have RP, you feel my pain, literally and figuratively. I know that in my earlier post I said night blindness was one of the most frustrating symptoms of RP but I take that back. The amount of stubbed toes, numbing pain from hitting my shins, getting a straight up belly shot from walking into a pole, wet-floor signs jumping out in front of me... yea, it’s definitely at the top of my list.

Thankfully, at the moment, my peripheral vision is still functional and safe enough for me to drive but where I am forever reminded of my diagnosis is through my inferior peripheral vision loss. Basically, if it’s under my nose, I’m not seeing it. In fact, as I sit here typing this post, I can vaguely see my fingers pecking away at the keyboard. While this may seem like a trivial example, there are so many instances in my life where I’ve been completely insulted by my peripheral vision loss.

After my freshman year of college, I started a waitressing job at Bob Evans. It was a good job and I’m grateful for my experience working there. Working in food service teaches you SO many life lessons (someone remind me to make Grant work in food service at least once when he gets older). While I was employed there, I began to realize just how crummy my peripheral vision was. I now know I have a ring of vision loss so I often get this "jack-in-the box" effect where people appear in my far side vision go away and then pop back up in my central vision where I usually bump into them. It’s so fun…

On a particularly busy Saturday morning, I had a tray full of drinks (6 large glasses of milk, if you were wondering). I turned around and ran right into another coworker, and you guessed it, the tray of milk glasses fell to the floor and shattered. Later in the shift, I bumped into her again while we were making salads. She looked at me and sarcastically said, “You know what I think your problem is…I don’t think you have any peripheral vision.” I looked her dead in the eye and sternly replied, “Actually, no, it’s not the best because of an eye disease I didn’t choose to have and I’ll be lucky if I can even see anything by the time I’m your age.” She blankly stared at me and then muttered an embarrassed apology. It was the first time I stood up for my vision and myself.

That same summer, I seated a gentleman in a wheelchair and his family at a table in the back of the restaurant. By the time I had arrived back with menus, the gentleman in the wheelchair had changed positions at the table. Full speed ahead, I greeted them, “Hi my name is Ali and I’ll be your serv——-“ I ended up in his lap. I fell right over that poor man because he fell into my blind spot. I was mortified. I went to the kitchen and sobbed. By that point, a coworker had witnessed the commotion and swung in to help, getting drink orders while I pulled myself together. As I returned to the table, I apologized and said, “Now that we are well acquainted, what can I get you to eat?” He laughed and left me a $20 tip. That man and the grace he gave me was a pivotal moment in my RP journey. There are good people in this world, y’all.

As I went through college, I had more and more occasions where I was constantly reminded of my inevitable vision loss. I went to a small private college which made us attend Lyceums each semester and occasionally, we’d get lucky and there would be some entertaining ones. This one in particular just so happened to be a magic show. My sorority sisters and I showed up fashionably late and had to sit on the floor in the front row. At one point in the show, the magician pulled out a sword, asked for a volunteer and pointed right at me. I almost threw up, and that time at least, it wasn’t because of the cheap Aristocrat vodka in my gas station slushee (I know, I know... I’ve grown up a lot since then). It was dark and after all, you all remember how I feel about dim lit events. I carefully walked up on stage, shaking, as he explained to me that I was going to pull this extremely heavy sword from his throat... His THROAT, y’all. He went to introduce himself and apparently tried to shake my hand. Well, there I stood like a deer in headlights, not seeing his hand in front of me. I finally looked down and saw it and the whole auditorium erupted in laughter as I made contact with his exaggerated air-handshake. At least I put on a good show. That poor man, if he only knew the person he chose to pull a sword from his throat that night, he’d change his career.

Today, I’m at the point in my vision loss where I am reminded daily of my disease. I get incredibly frustrated. I'll be honest, the one good thing about this pandemic is that handshakes aren't really a thing anymore. At least I don't have to constantly worry about missing the handshake or awkwardly reaching out first just to avoid the situation. Life is about is about silver linings, right? Still, though, there are days when I want to pick up those damn wet floor signs and break them over my knee. There are days where I just want to throw the middle finger up to someone who makes a funny comment about me running into chair and there are days when I want to punch the doorframe I just shoulder checked. But those days are few compared to the days where I just laugh at myself, pick up the floor sign and carry on with my day. I try to have patience and remind myself how blessed I am to still be in a position to work and live without modifications. I remind myself that I deserve to give myself grace because after all, I am more than a downed wet floor sign and I am more than RP.

All of my love and then some,

Ali