Social media handles:
Where are you from?
Where do you live now?
Tell us a little about yourself:
I grew up just outside of Chicago. I’ve always been the quiet, nerdy kid who liked computer stuff, games, puzzles, etc. Though I hate to admit it, I’m sure my eye contributed to why I was shy.
I went to college in Central Illinois for Information Systems, fully intending to move back to Chicago after. But the town managed to suck me in. It was like the longer I stayed, the more roots I built. People (especially from Chicago) love to rag on Central Illinois. They’ll say “it’s just corn fields!” or “it’s all so flat!” But here’s my take: Your town is entirely what YOU make of it. While yes, the land here is flat, but you know what? It makes for some neat sunsets. I seriously love the life I’ve built here.
I work as a Business Analyst for an Agriculture Cooperative. It’s also where I found my passion for fitness and martial arts, met my boyfriend, and have a great group of friends.
What’s your EYE Powering story?
Sooo it's kind of a long story…
I could never see more than light and movement in my left eye. I was born with PHPV (Persistent Hyperplastic Primary Vitreous). I think today it's called PFV (Persistent Fetal Vasculature). It's incredibly rare, and honestly, I still don't fully understand it. It caused a congenital cataract that messed with my eye's development. Because of that, my eye was also smaller (Microphthalmia).
Apparently, PHPV is the "benign mimic" of Retinoblastoma (Thanks, Google!), which makes sense because, like Retinoblastoma, there was that yellowish "glow" in my eye that you could easily spot in photos.
I had 2 surgeries as a baby. The first one was at 4 weeks old to remove my cataract. Normally with cataract surgery, you'd get a lens implant, but I did not. I'm guessing that was either because of the structural differences in the eye or simply because I was a baby. Unfortunately, after that surgery, I had a retinal detachment. The second surgery was at 6 weeks old to fix that.
To keep my eye from permanently closing, as well as save the vision I had left, my mom patched my right eye for 8 years. She also put a special contact in my left eye to help me see while I wore the patch. This was the routine and it worked out well. I was SO happy when I turned 8 and was done with the eyepatch. I remember that day clearly!
Things were smooth sailing until around age 11...but then my left eye developed glaucoma.
And once again, due to all the other complications, this was an aggressive form of glaucoma that was hard to treat. I had laser procedures done and was on eye drops. Eventually, the pressure stabilized, but it took 3 eye drops multiple times a day to do that. And every couple of years the pressure would go back up and we'd have to find a new regimen.
This year, glaucoma reached the "end stage" and became painful. I was given a choice to remove the eye or try to manage the pain. Drs. said if I chose not to remove it, it would likely happen within the next decade. After everything I've been through with it, I chose to remove the eye and I haven’t looked back since! Best decision I could've made.
What has been the most challenging mentally?
Seeing my eye socket for the first time (but thankfully, I'm past this mental hurdle). It's like seeing a body part you aren't meant to see, like an internal muscle or organ.
I knew I'd face that fear during my 1-week post-op. Thankfully, my doctor was super calming and reassuring. When he removed the bandage and said everything looked good, I breathed a sigh of relief, but I still hadn't seen it for myself. On the car ride home, I gathered the courage to lift the eyepatch and look. When I saw it, I broke down crying. But not out of fear or disgust. Out of relief! Ever since learning I could lose my eye, I built it up as this scary thing. And yeah…it can be scary. But I immediately felt relief because it wasn’t nearly as bad as my mind had built it up to be.
What has been the most challenging physically?
I was already used to seeing out of one eye. So thankfully I didn’t have to adjust to that. However, I'm very into fitness so it’s been hard to restrict my weightlifting and Muay Thai while healing. Once I’m healed and have my prosthetic, I’ll be getting back to that!
Where are you now in your recovery? I'm basically fully healed, eagerly waiting for my first prosthetic!
What advice would you give to someone going through their eye impairment journey?
Find and connect with someone who has been through this. It helps so much to have another person who gets it. If there’s no one in your area, there are online groups, which is also where I started! I’ve met some awesome people that way.
Who is your eye surgeon and ocularist?
Surgeon: Dr. Pak.
How did you find EYEHESIVE?
Scrolling through Social Media and came across this community!