Recently I have become more aware of the importance of sharing our experiences. I realised that until I telephoned Anne Klepacz in 2014, apart from hospital clinics, I had not spoken to a single person who had the condition or knew anything about it. All the time I was under the NHS I felt that it was my fault that I could not tolerate contact lenses. My attempts to describe the symptoms were met with puzzled expressions. It would have been helpful if I had known that what I was experiencing was to be expected.
So here is my story:
It begins in 1972 when I was 25. I was working in a bank in London and was starting to notice that the figures in the ledgers, appeared to be double. I had been wearing glasses for a few years and the optician referred me to Moorfields. I explained that I was getting double vision and after a while I was sent down to the children's department. It was a strange experience at age twenty five being shown Noddy and Big Ears on sticks. After a while the technician said, “you don’t have double vision”. I then explained that the double was not vertical but horizontal. I quote this to demonstrate how difficult it was to get a diagnosis in those days. Further examination revealed Keratoconus. I lasted a while with spectacles but the distortion became too great so I had to start on a very difficult journey with contact lenses.
The Gas Permeable lenses were very uncomfortable and became more difficult to wear. The consultant said that patients found it easier to tolerate lenses after a graft and suggested that if he cut the eye in the same place, like a fake graft, this may ease the discomfort. He did the operation but I can not remember how beneficial it was at the time.
These were the days when people smoked in offices and I became more and more sensitive to impurities in the air. I would walk out of the office and find it impossible to keep my eyes open sufficiently to cross the road. Fortunately, my friend Ian would help me navigate the traffic and get me to the station.
The lenses got increasingly difficult to wear and I kept knocking them out. I would be sitting in the passenger seat late on a Saturday night having lost a lens and with a torch my wife would have to gradually disrobe me till she found it. She even found one I’d dropped on a pebble beach.
In the early 80’s I took up jogging. Without lenses, I went out at about 6:30am when it was still dark, but because of my poor vision I ran straight into the back of a paper boy, which frightened the life out of him.
As the decade progressed I became increasingly sensitive to tree pollen. I knew that it would start around 15th March and last a month. I became so sensitive to light that I could not bare to open the curtains in the morning. I found I needed Ski goggles with closed in sides just to get out of the house.
A friend recently reminded me of the time we visited a swimming pool in Jersey while we were working there and how he had to tell me if there was any one in the water before I could dive in.
With all this going on I don't think I ever told my bosses that I had a problem doing my work. I didn’t get or expect any special treatment and in fact kept my problems hidden in case they inhibited my advancement.
Eventually, in 1986 it was suggested that the time had come for a graft, which I had that year. I found wearing glasses for the grafted eye and a contact lens on the other much more comfortable. This lasted till 1995 when I had my second graft.
During those nine years I had been very accident prone. Always tripping over kerbs, falling over and generally being clumsy. It was only after the second graft that I realised that the problem was due to my seeing with only one eye. Sometimes I would leave my glasses off and only use my contact lens on my right eye, while other times I would leave my lens out and see through my left eye using glasses.
I am saying all this to illustrate the point that as Keratoconus patients, we have a variety of problems to overcome. To the outside world, when we have a good fit with our lenses, we lead a perfectly normal life. But half hour later when the lenses become intolerable we could become clinically blind. I would go form struggling to butter a slice of toast, having to get so close, getting butter on my nose was a problem, to working normally at my desk two hours later. Then getting home removing my lenses and cutting up bits of cardboard to make a pin hole through which I could watch television. It is this paradox that is so difficult to explain.
Not long after my second graft I could get by with spectacles so I was discharged and forgot all about Keratoconus. I don't have perfect vision, it has left me with an astigmatism but it is good enough to drive, although I can't see my golf ball if I hit a good shot.
In 2014 I wondered if technology had improved enough for me to get laser treatment to improve my vision and asked for a referral to Moorfields. They said, “beautiful grafts don't push your luck”.
However, that visit put me in touch with the Keratoconus Self Help Association (KC Group) and I have had the good fortune to serve on their committee ever since. The aim of the Association is what it says on the tin. Its a place where members can share their experiences and discover they are not alone. The thing I remember from the 70’s and 80’s was the constant feeling that I was not getting my message across to the clinicians. I would explain what I could see and the difficulties I was having with the lenses but I never felt that they understood what I was experiencing. At the KC Group we are doing our best to improve communication and understanding from both sides of the optometer.
I am very fortunate that both my grafts were done by Prof. Roger Buckley. He came to give a talk at our conference in 2016 and a video of this can be found by following this link on our website: http://www.keratoconus-group.org.uk/conference_2016/. I bumped into him as he left the building and asked. “Did you really cut my old cornea out with a broken piece of a Blue Gillette razor blade?” He said yes; “and it was particularly difficult when half way round you had to do it left handed”.
I retired in 2007 after 44 years in finance and the message I want to send out is this. Yes, with Keratoconus you will have difficulties but there is no reason why you should not have a full and active life. At the first meeting of the KC Group I attended, I met two mothers of teenagers who were desperately worried about their children's ability to study for exams. What I could tell them was that during the most difficult years, when I was struggling with Gas Permiable lenses and working full time supporting a young family, I still managed to study for my professional exams.
The moral of the story is that whilst keratconus is an inconvenience, it is not a barrier. Its just one of life's problems that you have to overcome. Coincidently, in 1984 when my eye and employment problems were colliding to make a perfect storm, I had a desk diary with a daily motto. One day it said “ Life is a sandstone, it either grinds you down or sharpens you up, depending on the stuff you are made of. There is a lot going on with research and technology and there is every reason to be optimistic.
General forum for the UK Keratoconus and self-help group members.
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