|
Michael
:
I'm curious about that process, if you feel okay talking
about it. Not so much the mechanics of the testing, but
more what you went through emotionally when you heard bad
things, and then worse things, about your eyesight. I would
think that getting news like that would be not just painful,
but also unbelievable, as though they were talking about
somebody else.
Joel
:
You said it, Michael. The diagnosis of RP and its intimations
of future blindness so startled and dismayed me that I pushed
it almost completely out of consciousness, within days.
I did study the
|
What
does 'Not Fade Away' mean to Joel?
|
|
brochures
explaining what little was understood about the disease then
(mid-70's) and illustrated with approximations of how my sight
would deteriorate. And I told my girlfriend, Susan, whose
father was a doctor and who knew to take such things seriously.
Regardless, I found some way to discourage her continuing
interest, and soon managed to forget where I'd filed those
brochures or, more accurately, hidden them from myself. Textbook
denial.
|
|
Michael
: Was there
a particular event or series of events that forced you to acknowledge
that your vision was irreversibly diminished? I know (from some conversations
we had back then) you weren't walking around in a state of absolute
denial, but I wonder if you remember a point in time where a shift
occurred--where you began to see yourself as someone with a serious
disability.
|
Joel
: Yes, I acknowledged
having RP. But, as you conjectured, I actually felt as if this diagnosis
had befallen someone else, and carried on. The reality closed in
gradually at first: Night driving became impossibly harrowing, even
around town, and then I realized I frequently missed things others
could see, in daylight. Then my newly-prescribed reading glasses
failed to restore the printed word to clarity, and an eye exam revealed
that my visual fields were diminished and broken up. But the final
cosmic notification came when I nearly ran over a jaywalking kid.
That's when I understood I had crossed over into the realm of permanent,
irrefutable disability.
|
|