In 2000, my optometrist reported seeing scar tissue on my retina. Initially, he wasn’t sure it was RP (Retinitis pigmentosa) because I had been in an electrical explosion 13 years earlier, which had blinded me for four days. In 1987, I was working on modifying an electric circuit breaker panel that short-circuited my screwdriver and created an arc (or current discharge), which exploded in my face. This caused first, second, and third degree burns to my face, hands, and arms, removing the skin and hair from those exposed parts of my body.
I spent four days in a critical drug-induced coma and two weeks in the burn center of Nassau Medical Center. This is where I received skin grafts, in which skin was taken from my legs to replace the burned skin on my arms. I had to wear form-fitting gloves and sleeves for my forearms to prevent bubbling and scarring on my skin during the healing process. These gloves had to be worn for 23 hours a day for two years. The first couple of months I had little to no use of my hands, which was very difficult to adjust to. The only time I was only allowed to remove the gloves was when I took a shower. Needless to say, it was a very difficult process, yet I never doubted my full recovery.
I visited my optometrist in 2000 because I was having difficulty seeing well in bright light. He diagnosed my problem then as possible RP. When my family and I researched what RP was, I was in shock and disbelief. We learned that it was a hereditary eye disease, although no one in my family had ever been diagnosed or had any loss of vision due to RP or any other eye condition.
What upset me most was learning that RP is a rare disease with no available treatments at present. We visited many retinal specialists who all came to the same conclusion: that there are no known cures at this time, but the promise of future stem cell research to restore the unhealthy retina is very encouraging. It wasn’t until 2002 that I received a definite diagnosis of RP.
Editor’s Note: Retinitis pigmentosa (RP) is a hereditary, progressive retinal degeneration that affects both eyes. Night blindness, which usually occurs during childhood, is followed by the loss of peripheral (or side) vision. This peripheral vision loss progresses over many years to “tunnel vision” and can lead to total blindness. The rate of progression and degree of vision loss varies from person to person. Most persons with RP are legally blind by age 40, with a central visual field of less than 20 degrees in diameter. Loss of central vision can also occur late in the course of the disease. RP is an uncommon eye condition, affecting approximately 1 in 4,000 people in the United States.
None of the doctors I saw ever made me aware of what the stages of RP were and what I should expect as it progressed. My early symptoms were difficulty seeing in bright light; a few years later I lost my depth perception, and a few years after that I lost my night vision. Eventually I could not see anything in the dark, either at night or during the day in a darkened room.
Initially, coping with this diagnosis was not an issue; however, as my vision decreased, I had to learn to adjust to many different daily living situations. In life we tend to take things for granted, and, as the saying goes, “You don’t know what you’ve got till it’s gone.”
One of the ways I’ve learned to adapt is to rely on my other senses; for example, I now rely more on my sense of hearing. I am consistently listening for cars, footsteps, dogs, birds, and other noises; in the past, I may not have been as aware of these sounds. I also depend on my hands to “see” and feel different shapes and textures. This allows me to continue to work in the yard, plant flowers, and do handiwork around the house, as well as do my own auto repair work.
Since meditation has been a big part of my life, I turned within and frequently asked myself “What is it that I need in order to learn and grow from this experience?” There is, at present, no medical or surgical cure for RP, so I reached out to organizations that provide life skills to the visually challenged.
My mother was the one who reached out to the New York State Commission for the Blind and Visually Handicapped. The Commission, in turn, put me in contact with a mobility coach (also called an orientation and mobility [O&M] specialist), who instructed me in the correct use of a cane for mobility, traffic safety, and railroad and subway travel. It is my orientation and mobility training that has helped me build greater confidence when traveling and has encouraged me to step outside my comfort zone.