Life can throw you curves. This one happened to be a blessing. It has come with its challenges & I was naive to think there wouldn’t be. . . .
My Mom noticed something wrong with my eyes & the way I would turn my head to see things. I was about 3 – 4 months old when she noticed. I was diagnosed with, Congenital Nystagmus. My eyes involuntarily moved & my null point was off center. The docs considered me legally blind. I don’t know how I saw compared to someone without nystagmus, since it is all I have known. It is a focusing issue. I just went about my life dealing with it.
I was teased, ok, bullied by some, in school. It did hurt my feelings, but I never spoke up. I knew I was a fine person capable of living a good life. My self-confidence was always there, just didn’t care to show it. I was clueless about future obstacles. I definitely knew, extreme, small-town, Nebraska wasn’t for me.
Obviously, I couldn’t drive. Honestly, you never would’ve known I had a disability, it didn’t stop me. I was in, England, by the time I was 20. I nannied in, New York, right out of high school, traveled by myself throughout the U.S. I earned sales awards at my employment, even won a trip to, Hawaii, & went parasailing, then on a submarine. I went aqua gliding in, San Francisco, & loved walking all over these cities. It was just the “Kristina” thing to do.
I owned my disability. I moved to, Omaha, in 94’. I lived on my own, by myself, as I worked part-time through college & graduated with honors. The bus & NE winters were no picnic. It wasn’t a traditional life, not being able to drive, so I had to figure out alternatives. I bought a utility cart at Target & walked to the grocery store & back. Funny story: Once on the way back home, I tripped over a rock or something on the sidewalk. My eggs were on top of everything in my cart. When I tripped, the cart fell forward & I followed. My eggs went flying. I was walking South on, 90th st. That street is fairly high-traffic. It was on a Sunday afternoon. I am sure motorists were quite amused at the sight! If need be, I’d take my cats on the bus for vet appts. I managed quite well.
In addition to the inappropriate treatment in school, I received it in other aspects in life, such as employment & certain social settings. It did hurt me. I would cry at home & get mad by myself at times, but it was just that night. Then, I’d wake up & feel renewed. I was a success & sometimes people became jealous. Thank heavens for attorneys! By this time in life, I’d had enough & stood up for myself.
I bought a house in, Vegas & moved from, Omaha, in 04’.
I am not saying any of this was a cake-walk. I just wanted to keep going & achieving in life. I never cared about my vision, so treatment or cures was a fallacy to me. I’d check the internet every five-ish years to see if anything new was out there. I knew there wouldn’t be, it was human obligation & responsibility that made me research.
My life was easier by becoming good friends with my neighbor, Brad. He was also from, NE. I can’t thank, Brad, enough for driving me around the way he did & the favors he still does for me. He is a dear friend & I’d do nearly anything for him. We‘ve shared a lot of beers & had more laughs. He is a constant in my life that I never would’ve met, had I not had my nystagmus.
Then, in Feb of 2011, I did “the search”: Nystagmus+treatment. I had my cat, Panther, on my left, laying next to my arm &, Kitty The Pooh, laying in the back part of my chair, I had the front end of it!😃 I saw this link, ORlive. I clicked on it & watched the video. I knew this was something to get excited about. I picked up the phone & called this hospital, in, Akron, OH. The nurse told me all about it. She gave me a different doc, from the video. It sounded so foreign, I couldn’t remember it for months.
Well, I got the info packet in the mail & thought if they can do it, my local neuro ophthalmologist can. Was I ever wrong. He didn’t even take the information out of the envelope, he just looked in it & said, “if they can do it, I can do it & you don’t need it”.
Fast forward 8 months-that’s how long it took to get a consult booked w/this foreign dr. I was excited, because I knew if there would ever be a doc that knew something it was going to be “Dr. Foreign Name.”
The day arrived. My husband & I landed in Cleveland. Just 2 more days & I get to meet Dr. Hertle. How easy is that to say?? Tons of tests before he walked through the door. The second I saw him, I knew my life was going to change. He knew it & I knew it. The diagnosis is Infantile Nystagmus Syndrome.
Surgery was the treatment. Again, a waiting period to get in. Four months later I was back & a few more tests. None of them were painful, one was uncomfortable. They literally taped my eyes open & I had super bright lights flashing directly in my eye. It was the retina test. Then, a red laser type light. I was flat on my back in an extremely dark room w/a few nurses. 48 hrs, later was surgery day. It was a 90 minute eye muscle surgery. Three of the four ocular muscles on each side of my eye were cut & reattached.
My 90 day post op was a celebration. With his signature on the dmv eye test, I qualified for a driver‘s license. So, upon returning home, I immediately obtained a driver’s handbook & passed the written test in no time flat. Seventeen months later, I got up the courage to take the road test. This all thanks to my driving instructor – I went through 3 of them before I found one I liked & treated me right. Larry Covel, was fantastic. This learning experience would’ve been much quicker & pleasurable, had I met him a year sooner! I told no one NO ONE, that we had the test scheduled. Larry, picked me up & waited at the dmv while I took the road test. I passed!
That day was the biggest celebration in my life. I called my folks & husband & just said, “I PASSED!” Many tears fell, out of pure happiness. I still cry thinking back on all of it.
Up next on this journey was buying a car. Again, I went to a few bad dealerships & when I walked into the, Infinity, dealership parking lot, I fell into the hands of a compassionate person that sold me my very first car.
From there on out it has just been getting comfortable driving. Challenges still ensued, like renewing for the first time. Nothing at all changed, but the dmv treated me so unfairly that I called the capitol office to complain & a vp called me back apologizing, read my file & said it looks like we hassled you & it was for no reason.
Dr. Hertle, has been the kindest, sweetest, most helpful person to me. He has stood by me more than once & believe me, does everything he can to help the live’s of his patients’. His treatment has been the rainbow 🌈 in my life & he has been my pot of gold. This writing may seem long, but I could write pages more & in more detail. I wrote my song, “Heaven In My Eyes”, because of him. Here are pictures that help sum everything up! I wish you all blessings this wonderful to happen in your life, whatever your battle.
With much warmth,