All the bright colors of the world started fading away for me when I was 19 years old. We visited doctor after doctor, and none of them knew what was causing my eye problems.
First, I had blurred vision. Eventually, everything went dark. I couldn’t see anything. In the years that followed, I endured five different eye surgeries (corneal transplants). At times, it was an emotional roller coaster.
But I’m happy where I am today, because that roller coaster taught me a lot about life and got me involved with Rochester Regional Health.
A Diagnosis of Keratoconus
I was born and raised in Rochester. My mother wears glasses, but neither of my two siblings, nor my father, have had any issues with their eyesight.
In 1997, I started experiencing quite a bit of discharge from my eyes. It was similar to what you have in the corners of your eyes when you wake up, but it happened all day long, every day.
I was diagnosed me with keratoconus. I had never heard of it. I’ve since learned that it’s a genetic eye disease in which the cornea starts to get thinner and your vision gets progressively worse. It’s pretty uncommon, affecting only 1 of every 2,000 people.
My ophthalmologist told me the condition could be corrected with a corneal transplant. He then got me on the waiting list. I was No. 41. I was nervous about having eye surgery, but I had completely lost my eyesight by then, and I was willing to try anything.
The Eye Surgeries
I knew all along there was a possibility of graft rejection – where the transplanted cornea doesn’t “take” to the new environment – but I was desperate.
They started with my right eye. I’ll never forget when my doctor took the bandage off my eye the day after the surgery. The world was extremely bright and so colorful. It was the best I had ever seen in my life, even before I started having problems. I went from good vision, to blurred vision, to no vision to excellent vision.
The joy was short-lived, though. The cornea was supposed to stay round, but instead became oval-shaped. I was soon scheduled for another transplant.
The second one failed too. Finally, on the third try, I got a cornea that my eye didn’t reject. At that point, I could start the healing process. I was able to see through my right eye!
Again, the first surgery on my left eye didn’t work out, but the second one was successful. My eyesight was OK, but I was still having quite a bit of discharge. Eventually we found out that the discharge was caused by chronic allergies.
The issue wasn’t completely fixed yet, but at least I could see.
A Turning Point For My Eye Disease
After learning about other people who have keratoconus, I knew it was a struggle. But I wasn’t about to let it hold me back – I had no other health issues and was still young.
I joined a program called the Association for the Blind and Visually Impaired (ABVI). They help people with blindness and visual disabilities like me. The people I met there were amazing. I developed a network of people who were going through the same things that I was.
Through ABVI, I also started volunteering at Rochester General Hospital. They had an opportunity to help transport patients to appointments, and I knew I would enjoy helping people in need.
As I was taking patients to their physical therapy, radiation or dialysis appointments, we’d usually strike up a conversation. I’ve enjoyed listening to them and sharing my story. More than once I’ve been told that I made their day. They made mine, as well.
After volunteering for a while, I was offered a position to be a full-time team member at the hospital. I loved the aura of the hospital and the friendly spirit of the staff, so of course I accepted immediately.
Working for the hospital has been a great experience, and I have learned that there are many different ways of going through life. It showed me that there isn’t anything I can’t do if I put effort into it. I’m incredibly appreciative of the opportunity.
I’m excited about what the future has in store. My corneal transplants are working out OK for now, and I thank God for that.
I want to provide any service I can to make Rochester General an even better hospital. If I can help people, and let them know that a disability doesn’t have to slow them down, I’m grateful.
If you’re going through tough times right now, remember:
- You’re not alone. There are programs you can join and people who are willing to help.
- Maintain a positive attitude.
- You determine the day you want to have. You can still have a good day, even if bad things happen.
- Develop your support network. Whether it’s family, friends or others who are in similar circumstances, it’s important to have someone to talk to.
Don’t think that just because you have a condition that you can’t go forward in life. If you ask me, everybody has some kind of condition. It’s finding the way to live with your condition that’s going to get you through it. You can do it and live successfully!
Visit our website to learn more about our volunteering program and hear the stories of other volunteers.