By ELAINE SMOOKLER
I first realized I was having serious issues with my eyesight when I
found myself stranded on stage while performing as a comic M.C., warming
up the audience for a local Goth band. At the end of my set I cued the
music, the lights went off, and my world went black. Really black.
had been bumping into things and struggling in the dark for years, but I
didn’t think much of it. It seemed better not to. That night, as I
stood on stage, surrounded by a treacherous tangle of wires and
equipment, with the band playing full on, only inches away, I did the
only thing I could think of: I got down on my hands and knees and
crawled off stage. Fortunately, this audience had seen it all, so for
them it was just business as usual.
long after, I submitted to having my eyes poked, dyed, dilated, and
photographed. I was diagnosed with retinitis pigmentosa, or RP, a
progressive eye disease affecting the retina. I had already lost my
night and peripheral vision, meaning no more driving or even riding a
bike. Now the doctor was telling me I might eventually go blind.
remember, with humor, the bone the doctor threw me, thinking it would
appease my hunger to understand how the hell this happened. “Well,” he
said, calmly, “it’s either genetic, or random.”
Say what? You mean there might be no one to blame?
a longtime meditator, I had embraced the path as a tool to cut
self-delusion. So coming to terms with this new diagnosis meant
accepting that there really might be no way out. But even if I could
learn to live with my situation, I knew I was going to face difficult
thoughts, feelings, and sensations. The first was my fear of being
until the diagnosis, I’d vaguely noticed in myself a warm but
essentially condescending relationship toward the blind and other
“disabled” people. What I hadn’t quite realized was that my friendliness
toward the less-abled poor dears was ever so slightly tinged with a
hint of superiority. As I came to see the attitudes I had harbored, my
nightmare (other than being run over by a Prius—should a car really be
that quiet?) was that I would become an object of pity.
it or not, I needed to make friends with my anxiety. I began to relax a
bit with my oh-so-groundless situation and put the kibosh on the idea
that there was anything precious about my disability. Having a sense of
humor helped. I started to refer to myself as “El Blindo” and told
people I was hard of seeing. To my relief, I noticed that when I was
easy with the reality of my newfound difficulties, other people breathed
easier around me as well.
was handling things well, or so I thought. But that was before England.
My sister had offered me a week in London. Sounded fun. Until then,
humor and staying in my comfort zone had given me the impression that
losing my sight was no big deal. But as I spent a week walking up and
down darkened streets with horrifically quaint, uneven, rutted walkways
(why is everything there so old?), I felt a whole new universe of terror
rise up in me.
was overwhelmed. I thought I had it all together, and suddenly I was
depressed, discouraged, and felt so alone. As I arrived at the dimly lit
airport on my way home, I had to ask for special accompaniment to the
plane—which I hated. I felt emotionally burned out and grew impatient
and irritable as I waited. Can’t you see I’m blind, I thought. Hurry the
a stiff-backed, unsmiling blonde in a uniform showed up. I was terse
with her. After some minutes of uncomfortable silence I softened
slightly. “I’m sorry; I’m having an emotional day,” I offered. “Me too,”
she said, in a strikingly unguarded, and very un-English way.
then explained that her mother had just died and she was now alone.
She’d been late picking me up because she was in the back, crying. I had
my arm around her shoulders as we walked, shared, and wept all the way
to the door of the airplane. Before we parted, we embraced. It felt like
a moment of grace.
“Who is not afflicted?” I wondered.
had felt broken because I could only see myself. I broke open when I
saw that this too was part of the human experience. In that tender place
of rawness that uninvited change can uncover there is space for
something marvelous—a deep and genuine connection with all beings,
still perform, but now I need a seeing-eye stagehand to lead me to my
mark. Sometimes it’s scary, but not as much as it would be if I weren’t
doing it at all. But please, if you should happen to see me crawling to
the front of a stage, remember, if I ask for a hand, I don’t just mean
Smookler is a comedic performer and playwright, and the director of
communications for the Centre for Mindfulness Studies in Toronto.