I was 14 when I started noticing I couldn’t see in the distance as well as other kids. By the time I was 17, I could no longer read the chalkboard even in the first row in my history class. I couldn’t see the room numbers above the classroom doors, and I could only recognize people in the hall just as I was passing them. I finally gave in and asked my parents to take me to the eye doctor for contacts, not glasses.

The eye doctor decided I would wear rigid, gas permeable lenses. They always hurt and felt incredibly dry. They stuck tightly to my eyes so I had trouble removing them at night. The doctor would just say I needed to blink better -- a big blink. I suffered with these lenses for two years and finally got old enough to start sticking up for myself. I went back to the doctor and got soft lenses, which were great until I took Accutane for several months. The drug changed my eyes forever and made them chronically dry. The soft lenses now hurt all the time and stuck to my eyes like glue. The pain from the contacts made me fidgety and nervous all the time. It always got much worse when I didn’t sleep well, and I was in college and rarely ever had that luxury.

After a few years of constant contact lens pain, I broke down and tried twice to get glasses to give myself a break from time to time. I could not see well with them. When I tried to use them, I was dizzy, had trouble walking with them on, and they made me nauseous. My vision was also rapidly deteriorating. I had to get new contacts every three to four months, and the glasses were going to be thick even if I could get a good prescription.

I hated the idea of glasses anyway. I was very skinny (5’4 and 94 pounds), had long, gangly limbs, straggly long hair, and a beaky roman nose. I didn’t have a lot of money to dress well either. In high school, I was the sort of kid who people thought got straight A’s when I was actually only a B average student and even got some Ds and an F in math. In college I really was an honor student, but I still didn’t like that nerdy image. I felt humiliated to add glasses to that picture.

Then the local radio station started airing ads for RK and the miracle of not needing glasses or contacts to see 20/20. I thought it was the perfect solution and just had to do it even though my old eye doctor who had told me to do a big blink warned me against it.

The RK surgeon had an assembly line kind of practice. He would rotate between three offices each week, two in Oregon and one in Arizona, and he would do dozens of surgeries at a time in each location. I went to the screening and was told I was an ideal candidate. I was warned about potential light sensitivity and possible star burst with lights. I knew I could live with that even if it did happen.

So, in April 1990, my junior year of college, I started with RK only on one eye, with my right eye, just in case it didn’t go well. It didn’t.

The side effects were much worse than I could have imagined. The light sensitivity and star burst were nothing compared to the fluctuating vision. I had other problems I had no words to describe. Things looked flat and dull; colors were less vibrant. My night vision was very poor. I couldn’t really see details when I looked at a busy scene like traffic or books on a shelf. I had a terrible ache in my eye all the time, and got headaches every day. My eye was always dry as if I needed to take a contact lens out but there was no lens to take out. I also didn’t quite see 20/20.

I went back to the doctor. He said I needed another surgery to get 20/20 vision, so I went for another surgery. I thought that would fix the side effects, but it didn’t. I told the doctor about it. He said he had never heard of such problems, which I now know are called low contrast, and he brushed off the fluctuating vision. He said I should be happy with my good vision and get two pairs of glasses for the fluctuation.

I continued my life with one contact and one post-RK eye. It was a struggle because my eyes no longer functioned well together. My right eye bothered me constantly and as the vision fluctuated during the day, and the left eye felt uncomfortable from the contact lens. It got harder and harder to go about my life. Of course lack of sleep made things worse, but I was still a student and rarely had time to sleep a full night. I don’t know how I managed to finish college and do as well as I did. But that was all I could accomplish. The next year I had a scholarship to study in Belgium. I did not do well at all and I cannot look back on it without feeling shame.

By the end of 1992, the difference between my eyes became too much and I ended up having my left eye done, too. The same side effects were now a problem for both eyes, but the vision was balanced.

In addition to the visual side effects, my eyes are always horribly dry. We live in an air conditioned world, and this makes my life very hard. I can remember days when the pain was so great I couldn’t think straight. Since I had RK, I have trouble concentrating on anything, even conversation, I have a poor memory, and I feel like my brain has atrophied.

The rest of my life is a long series of eye problems. My eyes define who I am. I sometimes wonder who I would have been if I had never had the surgery, and I do not like who I became. The eye problems became the center of my existence. I have trouble being considerate of other people because it takes all of my energy to be who I am. I am frequently tired, depressed or angry. I often feel on edge and have little patience. I am often afraid and have anxiety attacks. I am the most pessimistic and cynical person I know. I am moody and take my pain and frustration out on other people.

I had always been a hard worker in my part-time jobs in high school and college. Now that I was fully a member of the professional work force, I ended up being a mediocre employee. This was still the era of administrative support, and for my first professional job, I was a glorified secretary. I would type edits that people hand wrote on hard copy documents. During an annual review I was told that I either did very well or very badly in my performance. How could they have understood that it depended on whether I was having a good eye day or a bad one?

For another job, I ended up being a glorified accountant supporting a development project that operated in the Philippines and West Africa. I got hard copy accounting sheets, old fashioned one-writes, with receipts in foot high piles and had to retype them into the electronic accounting system. That was a nightmare for me. And again, I got mediocre performance reviews.

Somehow, I managed to move ahead, but never far. Even now, I have a job that somebody years younger would consider a dream job, and my supervisor is several years younger and less experienced.

This also took a toll on my personal life. By the mid 90s, I gave up reading. My eyes were still getting worse and reading had become impossible. Next came movies, then TV.

One positive thing came of this. I discovered sports as an outlet. In school for PE, I had never played individual sports, only team sports, which I hated. As an adult, instead of reading and watching TV or having other hobbies, I learned that I loved in-line and ice skating, climbing, mountain biking, and snowboarding. You only need fair midrange vision for these activities, which I still had. These activities kept me going for years because they brought the relief of being able to set fear and frustration about serious life issues aside and simply live in the moment.

Relationships were difficult but I did have a long-term relationship for several years and even lived with my boyfriend. Of course, everything revolved around my eyes. Dates were too hard because I couldn’t stand to go to movies. I couldn’t stay out late for parties or dancing because my vision would get too bad at night and lack of sleep would ensure the next day would be a bad eye day. I was moody on bad eye days, which were more frequent as time passed. I often fought with my boyfriend about this, and it was a contributing factor in our breakup. But, he is still my very best friend and if it weren’t for him I would not be here now.

In the first few years after RK, I could function well in spite of the eye problems and I was hopeful I would find a solution. I didn’t wear glasses except in the evening when my vision would get worse. But it wasn’t long before I found myself wearing them all the time, which is ironic. I became that nerdy glasses girl I had wanted to avoid being.

Then I would have good eye days and bad eye days. The bad eye days would become more and more frequent until they were the norm. I would get new glasses and the cycle would start again. Getting glasses became more and more difficult. I would usually go to the glasses-in-an-hour places because according to their policy, they would have to redo the prescription until it was as good as I could get them to make it. I am grateful to these places because they were always kind and tried their best. I even tried to get two pairs as the doctor who performed the RK suggested, but it didn’t work out. It was never the right prescription.

I looked harder and harder for solutions. I went to all the best eye doctors in the area, even visited doctors around the US and abroad, and had all the tests run to measure whether I had low vision or any other exotic problem. I went to a world famous eye center. I have certainly been seen by at least 100 doctors. Many of them tried to fit me with all kinds of exotic contacts since I could still see so well with them. But they hurt all the time so I gave up.

Many of the doctors were very kind, but others were callous and patronizing. Very few doctors ever understood that just because I could be made to read the eye chart didn’t mean I could see well. Most didn’t understand that if contact lenses hurt you can’t use them. Often they would love me at first, then after a few appointments, they would no longer be so caring. A friend of mine who has chronic migraines calls this the honeymoon period. I think they were frustrated with me because they couldn’t help or else they had decided that since they couldn’t help, I must be a hypochondriac. One doctor swore I was seeing well with the contacts he had fit me with when I couldn’t see two feet in front of me. He said I had just forgotten how it was to see well, and got mad. Another doctor told me that if I wanted it to work it would work; it was my choice. We’re all made of electrical particles and can change the outcome with our thought process, etc. For him, fitting contacts was a spiritual journey.

I was a freak show. New doctors would always have their partners file past to see me, and one even had his little boy there for take-your-child-to-work day. At first I didn’t mind this because I thought they wanted to learn and help. After a while, I realized most were morbidly curious.

Over the years, I tried all kinds of high end eye drops and gels. I tried punctual plugs and having my upper and lower tear ducts cauterized. This became an unfortunate adventure because I had tears streaming down my face and it took months to get the upper tear ducts open again.

I went through vision therapy for months. I used hot compresses, eye scrub, and antibiotics to try to ease the dry eye problems. I took flax seed oil and high doses of vitamins until my skin turned yellow.

The Internet took off in earnest in the late 90s and I scoured the Web for information.

The years passed and things got worse and worse. I finally went to a doctor who said a corneal graft would help. Others had told me a corneal graft would probably not help, but I heard what I wanted to hear from this particular doctor. The idea of a fresh, new cornea gave me hope. As with RK, we started with my right eye. It took a year to heal. During that time I was in more pain than I had ever been at any other time in my life. The dry eye problems were so bad that I didn’t know if I could survive. Eye strain was unbearable. Then a friend introduced me to high levels of ibuprofen. For several years I took at least 1600 - 2000 mg per day, and I am surprised I still have internal organs.

During the year my cornea healed, the vision from that eye was a complete wall of blur. I learned to function with poor vision in only one eye. As before, I don’t know how I managed, but I did. I think it was the faith that the cornea would heal well and I would see well again that kept me strong. During that year, I worked in a Kosovar refugee camp, and later on an emergency shelter program in Kosovo, but strain from the eye problems took its toll. After a few more field assignments, I finally realized I had to be US-based and could only handle short trips.

After that year was over, I got the sutures out of my eye. I honestly thought that would mean I would start to recover and see better. I was wrong; my vision was much worse than it had been prior to the corneal graft; it was completely blurry. And the worst part was that the blur fluctuated just like my vision had. The doctor was pleased with the results and thought I could simply go to a rigid, gas permeable contact lens, which of course, was too painful. He also wanted to do Lasik on top of the graft and I refused.

I went about my life like that for another two and a half years. In the spring of 2000, I came to a point where I just couldn’t stand to work anymore. My best eye days were now like my old bad eye days. I was seeing double much of the time. I went through the rest of my savings. I was terrified.

Then I found a link on the Surgical Eyes website for scleral lenses, and read about them. I went and tried them in April 2001. For the first few months, they were a miracle for me. I could see very well and function like a normal person again. I actually felt fully human for the first time in 11 years. I went back to work, even took a job with significant responsibilities. I became a bookworm, went to movies, continued my sports.

Unfortunately, my vision deteriorated yet again, and I got a new pair of scleral lenses. The new pair was agonizingly tight and left deep imprints in my eye. I couldn’t see well with them. The doctor dismissed the pain and poor vision and said they were the very same shape as the old pair because the computer had the coordinates entered into it. I asked again and again, and made the long journey to see the doctor yet again, and finally she revised the shape all together rather than try to reproduce the original shape. That pair would cloud up very quickly during the day. I gave up and found another doctor in Britain who made scleral lenses. His were not perfect, but helped for a while, until one eventually broke in my hand while I was cleaning it. My vision had deteriorated again anyway.

During that time, I also tried another doctor who had specialized lenses that he had invented. He said he had helped many people like me. His contacts were the most painful I have ever tried and after two weeks of torture, I gave up. He also tried smaller scleral lenses that didn’t work at all. I also tried to go back to commercial lenses and found I could no longer see with them.

Finally, I went back to the first scleral lens practice since a new doctor had started there, and I got another pair last March. They were alright, not great. Then they started to scum up during the day. This got worse over the months. It finally got so bad I started to have trouble seeing well enough to do my work. I gave up my sports and reading and even quit going out with friends after work because my contacts would scum up too badly for me to function. I had no more quality of life whatsoever.

My vision had become too bad to wear glasses for normal activities so I was totally dependant on the scleral lenses. I felt trapped.

This problem continued to worsen until last fall when I was on a business trip, and one day, I couldn’t do my work anymore. In desperation, I got back on the Surgical Eyes website, and did something I always hated doing. I read other people’s accounts -- and found an amazing story with a happy end on the bulletin board about a woman who had gone through 4 years of post Lasik Hell and had finally found a doctor in Florida who fits post refractive surgery patients with a mysterious thing called Wave lenses.

I had no idea what this was, but managed to track down the doctor. I sent him a melodramatic e-mail, which I was afraid would scare him off, but he answered right away, and gave me straight answers. He was kind and patient and took the time to really explain how the technology works. I decided to try one last time, and go see him the following January, which was months way. It felt like a lifetime.

During the weeks leading up to my appointment, I was more depressed than I have ever been in my life. I was exhausted from the 15 and a half years of post-RK complications, and I had no more energy to lead my life. I felt I had earned the right to stop searching for a solution and deserved some peace. I felt that I had lost my youth and was too old to be starting life over even if I did find a solution. The only reason I didn’t give up during this time was that I had promised myself this would be the last time I would ever go through anything like this again, and then I could give up if it didn’t work. I had nothing to lose by trying one last time.

I was so nervous in the days before the first appointment that I couldn’t sleep or eat or think. After two long months of waiting, the morning of my appointment, I finally met the new doctor, Dr. Ken Maller. Dr. Maller already understood what I was going through, and had even helped people who were in far worse shape than I was. Just like he was by e-mail, he was kind and took lots of time with me. He explained everything in great detail, took measurements of my eyes, and then ordered the lenses. I came back two days later and tried the new lenses out.

With these lenses, I could instantly see better than I have seen in many years and reading was easy.

A challenge for me remained: the lenses burned while I wore them, but the Dr. Maller said this is to be expected with my eyes and that it would go away over the next few months. This was very hard for me because I truly couldn’t believe anything could really ever help, but I had nothing to lose by trying and all the time in the world to try. Plus, Dr. Maller always answered my questions and reassured me when I worried, so I learned to have some faith in the possibility that things would work out, which is very unlike me.

Then something amazing happened -- last Saturday, I got up, put my contacts in, and they felt a little better. I went to brunch, something I haven't had the energy for in ages because mornings are hard on my eyes. But over brunch Saturday morning, I felt pretty good, and had a great time rather than pretending to in order to try to feel normal. By early afternoon it was snowing, and I was hanging out in a bookstore (one of my favorite things I can enjoy again!), and realized that I really felt fine, the burning had almost stopped. I got so excited I spent too much money on a pile of books on all kinds of topics that will take months to get through.

I walked home for almost an hour in the beautiful falling snow, something that would have hurt my eyes only a day before, and it was okay. That night, I went to two parties, and it was close to midnight before I felt like I really had to take the contacts out. I felt so much better that the next day, I even went snowboarding!

To anybody who has never had to live with post-refractive surgery complications, this will seem trivial, even silly, but those who have lived with complications will get it.

I still have a lot of personal issues to work through since my entire adulthood developed around post-refractive surgery complications, but that’s okay because now it is worth it to make the effort to work through them. It’s really overwhelming to me to think of a new life without constant pain and such bad vision I can’t even do simple things, so I need to set some goals, and now I know I can achieve them. I was so young when I had RK I never got to really live my life properly. Now, thanks to Dr. Maller, my life is finally beginning.

Diane
Washington D.C.

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