Some have asked me “How did this all start?” It started innocently enough.
About 15 years ago, my husband and I had afternoon appointments at Lenscrafters to get our eyes checked for new eyeglass prescriptions. My appointment was about a half hour before his – we each had different doctors. Well, he was in and out with a new prescription, and I was still in the examining chair. My doctor clearly saw something in my eyes that concerned her. She called in the other docs and then at 5:00 pm on a Saturday afternoon she called the Wilmer Eye Clinic at Johns Hopkins Hospital to schedule an emergency appointment for me.
When my husband and I got there, a very nice M.D. / Ph.D. ophthalmology fellow was waiting for us. For the next five hours he put drops in my eyes, shined white lights in my eyes, took pictures of my eyes and asked me to read letters that were 20 feet away. Finally, he told us we should come back Monday morning to see the experts. We left exhausted, hungry and uninformed.
My vision was ok to me. I thought this was a very painful waste of time – much ado about nothing. Monday we went back to Wilmer and the doctors were again very interested – not in me, but my eyes! They examined and examined, conferred among themselves, told me they had diagnosed me with pattern retinal dystrophy and sent me on my way.
At that point, we switched from the shopping mall optometrist to a Wilmer ophthalmologist for our annual visits. Every year, I would go for my exam, the ophthalmologist would panic and send me back to the retinologist at Wilmer. I would dutifully visit the retinologist, she would affirm my diagnosis and I would be on my way. Nothing could be done about it, she said. She was very nice, but unhelpful. Come back next year, and we’ll tell you how much more your vision has deteriorated.
Eventually that retinologist moved away and I stopped going to Wilmer. My vision started to deteriorate. I started missing parts of words and things were especially blurry. I kept getting new glasses, always thinking that the glasses would help me see better. I love beadwork and I tried a million different magnifiers to help me. Nothing really helped.
I started seeing a new retinologist and it was a horrible experience. I went into the waiting room and there were probably 50 people waiting. After waiting an hour, I was called by a technician who gave me drops, then called by another one who took pictures, then was shuffled into an exam room where I waited for the doc. He came in, shined light in my eyes and was out the door before I could ask a question. I figured he saw maybe 200 patients a day – a real Medicare factory. I went back twice and then gave up.
Because the retinologists had a doomsday attitude, so did I.
Last year, my opthalmologist encouraged me strongly to go back to the retinologist. I said I wouldn’t go back to the old one and so he gave me the name of a new one. Retinologist Number 5, I’ll call him.
My husband came with me. It was a smaller office. I was seen on time. Number 5 examined my eyes and showed me the pictures. He showed me the blind spots and told me that I had a two- to ten-year window of progression. Then he asked, “How are you dealing with this?”
No one had ever asked me that before. I was completely taken aback. Instantly, I blurted out “I’m fine.” He then softly said “When you are ready, I have someone who can help you.”
Six months later I went back for another visit. Short wait, lights in the eyes, pictures. No change, Number 5 said. And then those words again: “How are you dealing with this?” This time it wasn’t a surprise. With tears in my eyes, I said “Not very well.” I didn’t tell him, but I had signed up to go my annual beading convention and I wasn’t taking any classes where I would have to work with small beads. I couldn’t see them any more.
I had also washed my hair with hand lotion a few times. I misread an airplane reservation for my husband and he missed his flight. I had stumbled on an escalator at a subway stop, and banged up a knee. I was beginning to feel very uncomfortable getting around in Washington. I found myself making up reasons not to go places if I had to drive – even familiar places. The highway signs didn’t say the same things that they used to.
So this time, when Number 5 asked that piercing question, I said I was ready.
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