Melanie’s Keratoconus Story – “Life Inside an Impressionist Painting”
I live inside an impressionist painting, where colors smear across the canvas and ghost images hover around any large object I can actually identify. At night, my world is ablaze with eight-pointed stars that spring from every source of light – headlights, streetlamps, neon signs and even candles on the altar at church. When I try to focus on your face, I see a double image of your features; your eyes and nose and mouth run together like melting wax. Like a blind person, I focus on your voice, your height and weight, and the way you move. I miss seeing you smile and roll your eyes and grimace – all the nuances that nurture communication. Because I can’t see you clearly, I often misunderstand. I’m a writer and graphic designer, but I can’t read the words on the monitor as I type them. I can’t read a letter or take legible notes when I talk on the phone. The more I enlarge the letters on my monitor, the more they smear. I squint. I turn my head, and try to capture a pinpoint of light that will fall on my retina at just the right angle and reflect a clear impression of what’s before me.
I’ve lived for 39 years as a classic myope, “seeing” new places and people and experiences through my enormous collection of novels, reference and business books, textbooks, biographies, and books on art, psychology and spirituality. At one time, I could take out my contact lenses before I went to bed, put on a pair of bottle-bottom glasses, and settle under my down comforter to read myself to sleep. Since having RK surgery some 17 years ago, however, there’s not a lens in the world that can filter light through my damaged corneas and hit the sweet spot on my retinas. If I want to read these days, I must wear both contact lenses and reading glasses, and maintain a powerful squint.
Now I’m locked into a smeared world filled with beautiful works of art and brilliant literature, as well as the simple pleasures and necessities of sight – the daily newspaper, the buttons in the elevator, the menu at the meat-and-three, the birthday card from a friend, the calorie count on a carton of yogurt. I can’t see any of them clearly enough to use them. Bursts of light are excruciating for my damaged corneas. Sometimes it’s seemed easier just to stay in bed in despair and sleep the days away.
To adequately explain why ClearKone® lenses made such a difference in my life, I have to explain the impact of my RK surgery. I started wearing glasses when I was eight and contacts when I was 12. I could always read without correction, but the glasses and/or contacts were critical if I needed to see anything beyond my books. When RK surgery came to the forefront in the early 1990s, I jumped on the bandwagon and had one major procedure and one “touch-up” performed on each eye by one of the city’s most prominent ophthalmologists. For a few weeks, I lived the miracle of 20/10 vision. I could see the lighted display on my clock in the middle of the night. I no longer had to baby expensive contact lenses or endure the pain of getting debris caught under them. I could move from reading to driving to computer work seamlessly, ride freely in a convertible without worrying about dirt flying into my eyes or my contacts drying out, swim and see at the same time, and best of all – my vision was better than it had ever been in my whole life!
My 20/10 days lasted for about a month, and then the unthinkable happened. My vision began to deteriorate, both at near vision and at a distance. My new crystal-clear world slipped away from me day by day, and I began what would be a 17-year quest to regain my sight. My doctors tried every contact lens available. While I could see fairly well with gas permeable lenses, they were pure misery to wear, rubbing against my RK incisions and forcing me to take them in and out, over and over, every day. My vision fluctuated so much in the course of a day that no prescription glasses ever gave me clear vision at any distance. With menopause, my dry eyes dried out even more. I had my tear ducts cauterized. I tried wearing nothing but glasses for months in hopes that my vision would stabilize and adapt to the glasses, but it didn’t work I moved to another city and new optometrists tried to help me. We tried various soft lenses, but they only draped themselves over my flat cornea and many incisions and did little to help me see, although they were more comfortable than gas perms. My optometrist tried piggy-backing a gas perm lens over a soft lens, but the lenses wouldn’t center. I spent endless hours on the internet and phone, talking with specialists throughout the country, trying to find the one doctor who might have a rare and unpublicized solution for failed RK procedures.
Finally, with the dawning of the new century, the first hybrid lenses came on the market, and after weeks and weeks of fittings and trial and error, for the first time, I had decent vision and decent comfort with monovision Soft Perm lenses. I still couldn’t be corrected with glasses, so I was heavily dependent on my contacts to read, drive, and work. Because my RK incisions were so prone to irritation, the hybrid lenses would periodically cause one or more of the incisions to open up. That was agony, both because of the pain and because I would be unable to wear the lens (and thus become visually disabled) until the incision healed enough for me to tolerate it again. This year I developed yet another problem with my hybrid lenses. Almost as soon as I’d insert them, they would cloud over with a thick, gluey substance. I spent more time taking them out and cleaning them than I spent actually wearing them!
Having moved back to Birmingham, I went back to UAB Eye Care and met Dr. Adam Gordon, who told me about ClearKone® hybrid contact lenses. From the first moment I felt that lens on my eye, I knew it was the answer I’d been searching for. Because the lens floated on a layer of fluid above my RK incisions, they were incredibly comfortable, and my visual acuity was better than it had been since my one-month bout of 20/10 vision 17 years earlier.