With the Foundation’s Save Your Vision Month starting next week, I thought it might be a good time to share my thoughts about a tough decision many people affected by retinal diseases have to make – the decision to stop driving.
As is often the case with retinitis pigmentosa, or RP, I had relatively good vision early in life, only to have it decline over a few decades. I’m now 53, and I was lucky enough to be able to drive until I was almost 40. Between 18 and 40, however, I had to abide by the “rules” of visually impaired driving. I rarely drove at night, tried to stay in familiar areas, avoided inclement weather whenever I could – the list goes on.
I’d bet a fair amount of money, however, that no one’s experienced what I’m about to describe.
I was a partner in a law firm in Illinois for 20 years, beginning in 1986. Back then, I was very much a closet RPer and, therefore, said nothing to those who hired me as a young associate. Deep down, I knew I was hiding something of potential significance, but the fear of being turned down for the job, coupled with denial (and thinking, “It won’t get that bad for me”), guided my thoughts at age 27.
Somehow, I was able to keep the secret until my vision worsened to the point where I had to tell one of my law partners. He was surprised, but not shocked. He’d noticed little signs of poor vision, but because I lived only half a mile from the office, and could “safely” get home after dark, he never sensed the enormity of what I was dealing with. So I continued driving.
I did change my work habits, to try and eliminate risky situations. But when those adjustments weren’t possible, I sought the help of my partner, whom I also considered a friend. And, to this day, I still can’t believe what we did.
I was determined to drive home at night, even in rain and snowstorms, as long as I could see the taillights of the car in front of me. That car was driven by my law partner, who would lead me out of the parking lot and along the half-mile route to my house. I assured him I could make it into my driveway, as it was flanked by reflective markers.
So, picture this: One very intelligent, caring and compassionate lawyer leading the way, in a Mercedes, for his legally blind, 10-years-younger partner, in his Volvo, virtually bumper to bumper through the streets of DeKalb. This lunacy continued for a couple years, even though I knew I was pushing my luck.
But that’s the thing: The fear and anxiety of giving up driving overwhelmed me and consumed much of my rational thought.
Finally, one Friday – July 9, 1999, to be exact – my guide and another partner in the firm came into my office and said, “We need to talk.” I invited them to sit down, and some awkward silence ensued. Then, my senior partner spoke: “You have to stop driving.”
I said nothing. I remember looking at the floor, resting my forehead on my hand. Finally, I looked up at him and said, “You’re right.” I was at the same time scared and relieved.
Ten minutes later, I called home, and my wife, Pam, answered. At the time, our daughters were ages 11 and 8, and we had not told them about my RP. I asked Pam to come get me at the office and to bring along another driver, so as to pick up my car. I briefly explained to her what had happened at the office, and she began to cry – tears of joy, not sadness.
About 30 minutes later, she and her father came to get me. I haven’t driven since.