It’s impossible to think about going blind without thinking about loss. When you have a degenerative disease like RP, the loss comes in unpredictable bursts that steal pleasures and pluck freedom from disappearing fingers. In the weeks just after my diagnosis, I thought a lot about how my life would change and what blindness would take from me; I was most afraid of losing the ability to read the printed word.
I have always loved words; the way they can simultaneously smooth and sharpen the page. A life that leaves me unable to see the printed word is unimaginable. I feel paralyzed by the thought of no longer seeing how the shapes of the words meld and flow. I wonder what kind of writer I will become when the pages turn dark. Perhaps I will learn to rely solely on the musicality of language; the taste of the words in my mouth and the feel of their vibration on my lips. I am sorrowful when I think of no longer taking the words in with my eyes, but I will read voraciously until the darkness has swallowed them up.
Although the loss of the ability to read was my greatest fear after RP became part of my life, one of the most significant rites of passage in an RPer’s life is giving up driving. I was a terrible driver, for now obvious reasons, and always felt anxious behind the wheel, but I have definitely felt the loss of freedom since I gave up my car for less convenient forms of transportation.
Because one of the first things that alerted me, and the doctors, to my RP was decreased night vision, the consequential difficulty led me to stop driving after dark immediately following my diagnosis. The combination of the darkness and the glaring lights of oncoming cars made it so I simply couldn’t see well enough to drive safely. In truth, it hadn’t been safe for years: I had just been lucky.
I had also, in daylight hours, had several run-ins with walls, poles and curbs that seemed to jump out at me from nowhere. This started serious contemplation of whether I should continue driving at all. Walls and curbs only hurt my car, but what if it was a child or an animal that I didn’t see? I couldn’t bear the responsibility of hurting someone just because I didn’t want to give up my car; so, about seven months after my diagnosis, I gave up driving altogether.
When I decided to give up driving, I chose to surrender my license and make the rite of passage official; I had no reason to hold onto it when I knew I would never drive again. I needed to make it real. I suppose it was my way of dealing with the loss head on, not allowing myself to live in denial about the gravity of my disease and how it was going to continue to change my life. I was empowered because I took charge of the decision and I knew I was doing the right and responsible thing. I felt the loss, but it was intermingled with a sense of relief.
It the first couple of months without my car, I joked about how lucky I was that I never had to be the designated driver and how I had always been a lousy driver anyway, so no big deal that I would never drive again. True statements, but I also started to see how my disease was a burden to the those around me, and how I was going to become less and less practically useful as the years and the RP progressed.
I hated listening to my family agonize over who would drive me home after a family dinner, knowing how tired they all were. I hated knowing that once I arrived somewhere, I was stuck until someone else was ready to leave; I had lost the freedom to come and go as I chose and because of this I became more reclusive. I didn’t want anyone to have to take care of me. I was determined to take care of myself.
My family never complained and I knew that they were just trying to make things easier for me, but I needed to find a way to assert my independence. I had always had a fiercely independent nature and I wasn’t going to let RP rob me of that. So, I learned the ins and outs of the LA transport system, which is no small feat given that it is the worst in the country. I remember the first months of riding the bus, looking out the window at the enraged faces of the drivers in their cars, and feeling lucky that I got to spend my ride home listening to music, far away from the stresses of road rage and blaring horns.
Surrendering my license ended up saving an important part of who I am, and showed me that my determination means something. And let’s be honest, L.A. busses are full of stories dying to be told.