The Long Journey

I hear my mother’s voice. “Stop rubbing your eyes,” she says. Dry eyes did not stop me from wanting contact lenses as a high school senior. I saw them as an opportunity to be beautiful and popular, freed from the glasses I’d worn since fifth grade. After all, I was reminded, “Men seldom make passes at girls who wear glasses.” I got contacts and squinted through painful eyes for months before finally giving up and going back to glasses and dryness.

I stayed away from contacts until soft lenses came on the market, and, although the ophthalmologist who examined me told me my eyes were probably too dry for any contacts, I really wanted them. Alas, I had no more success with the soft lenses than I’d had with the ones in high school.

Over the next twenty years my eyes grew drier, grittier, and often tired. If I read for too long they burned. Each ophthalmologist I saw recommended various over-the-counter drops. When Restasis came on the market as the new “cure,” I used it faithfully although it was expensive and did nothing to improve my condition. I was tested several times for Sjogren’s Syndrome, but the tests were always negative.

In 2005, I lived in New York City and was referred to a dry eye specialist. I’d never heard of such a thing and was excited to meet him. Dr. L. was sympathetic and charismatic. First, he tried temporary plugs to block my tear ducts. When I couldn’t tolerate those, he permanently sealed my ducts. At night, I used a moisturizing mask and gels. These things helped some but I still had periods when reading or computer work caused burning and stinging.

In 2009 I moved to Northern California. Loved the cool temps but the wind exacerbated my dry eyes. For two years I stopped reading entirely and switched to audiobooks. The memoir I had been working on was put on hold. I stopped volunteering at the local animal shelter. Just being in the same room with a cat made my eyes itch and I supposedly wasn’t allergic. I spent a lot of time in dark rooms with warm compresses on my eyes. I wanted to cry but, as I later learned, I produce no tears. On my 4th or 5th visit to a sympathetic ophthalmologist, she said, “I’m sending you to a cornea specialist.” After confirming that I produced zero tears, Dr. H. sent me to the specialists at UCSF where I was fitted for PROSE lenses, the special lens originally developed for eyes damaged from fire or combat. They float on the white part of the eye (thus they are sometimes called scleral lens) providing a constant source of liquid. To say they changed my life would be an understatement. I was also given a lip biopsy, which showed that I did indeed have Sjogren’s Syndrome. Many Sjogren’s sufferers do not carry the antigen in their blood.Thus all those years of negative results.

I am now in my 70’s. I lead a normal life, normal within the limits of someone who will always have dry eyes. There is no cure, but there is help. I’ve worn my PROSE lens for nearly 4 years. Three years ago I finished my memoir and presented it to my family for Christmas. It’s been quite a journey.

DianaK