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.