Tuesday, December 14, 2010

The Penlight

Raging deep within my retinas, and fueled by cheerful compliance by my genetic code, rages a war on the backs of my eyes.  My genes seem to be under the strange impression they're supposed to annihilate my photo-receptors--those "rods and cones" comprising my retinas, receiving and transmitting signals into my optic nerve and to my brain.   This siege destroys the rods and cones from the outside-in, leaving me with tunnel vision, slow adaptability to light changes, color blindness, depth perception problems, night blindness, and (oddly enough) light oversensitivity.   This makes it difficult to see.  
I was distantly aquainted with RP because my cousin, Paul, has it.  Paul is two or three years older than me and two or three times smarter.  He teaches computer science at Augusta College in Georgia.  He’s lost his mother and his sister, and he’s been losing his sight for years.  Paul is a hell of a good guy, and an accomplished academic.  His late mom, Frissy (my mother’s older sister) was also very bright.  Frissy had researched her son's disease extensively, filling my mom in on the discoveries she'd made on the internet (a device with which my mother and I were only vaguely familiar).  My mom would relay to me what Aunt Frissy told her.
"Man that sucks about Paul," I'd respond.  "What are the odds we'd both have bad eyesight?"    
Among what Frissy relayed to my mother was that Paul's retinas were deteriorating because of something called RP, that the thing’s genetic, and that my great-uncles (both brothers, both blind) probably had the disease, though it wasn't commonly diagnosed in their day.  Now, with Paul’s diagnosis, and with this newfound information, the scales began to fall quickly from our eyes.  We didn’t need a Mendel Square to jump to the conclusion that most likely I had the damn thing, too.    
At each stumble along RP's stony path, my parents and friends have had to prod, push, and pester me to do what's needed to confront it and compensate for it.  Upon every step, I've whined and dragged my feet like at dog at the vet's welcome mat.  I set the tone on this, the first step.
"We need to find out if you have RP," ever more increasingly.  
"What's the point?  I don't need to.  I'm really not interested."
I held out for awhile.  My parents respected my wishes, but with the wanton destruction of all things in my path, their patience eroded, as it must have always done.  
Anchorage was fortunate to be the home of a top retina specialist: Dr. Thomas Harrison.  Whether in spite or because of my darkening fears that my near-sightedness was more than simple myopia, and that apparently it worsens over time, I adamantly stood against visiting the specialist.  Anyone awaiting a disappointment he already expects understands.  No news was fantastic news, so why seek out its barer?  
But it’s also hard to see with one’s head in the sand, so I caved in and accompanied my folks to Harrison’s office.  I felt like I was awaiting the jury foreman and his pronouncement of my indubitable guilt.  
We walked into his office and I sat in a normal chair.  My mother said hello to Dr. Harrison when he strode in.  He seemed like a good guy, and he must have hated this part of his job.   
“OK, let’s take a look-see,” warmly, his little penlight in hand.
I opened wide my eyes and he shinned the light in for a peek.
“Holy cow do you have RP!”
“Are you sure?”
“Oh, yeah.  The scarring on your photo-receptors is textbook.  I've seen a lot of these and yours is clear as day.  No pun intended.”
“Am I going to go completely blind?”
“Yes, probably.”
“No telling.  RP moves at different speeds for different people.  Some people lose it very quickly, like in months; some very slowly over the course of their lives.  It tends to degenerate at a relatively constant speed, though.  I suspect you’ve had the condition undiagnosed for many years, and the RP is progressing fairly slowly in your case.  That’s my suspicion.”
Oh good, slowly.  Silver lining, there.
He put down his penlight.  The exam had taken a matter of seconds.  Quicker than Lasik.    
“Do you drive?”
“Yes, but my license is suspended.”
“Great!  Now you don’t have to worry about taking the test again and getting it reinstated.  And you won't need to turn in your license to DMV.  You can just stop thinking about it now.”
This guy is full of silver linings.
 “So I don’t get to drive anymore?”
“Nope.  Never again.  You should never have been driving in the first place.”
Can’t argue with you there.  
Harrison’s bluntness was just what the doctor ordered.  He could have taken my hand, cooing, “David, you poor little soul.  I have some tragic news for you: your life is fucked.”  That'd have been the opposite of what I needed to hear.  I needed to have the confidence the world was going to demand--and that I was going to have to muster in myself--instilled in me right then and there in his office.  He understood this, probably more than anyone else in town.  He must have made enough of these diagnoses, and seen enough patients over the years to know the newly diagnosed needed a kick in the butt more than a pat on the ass.    
Your life just got a lot harder.  You better sack up and do something about it.  If you wallow in this pity, if you concentrate on what you cannot do, if you rely on others to do these things for you, you will die inside.                  
Why was something so unsurprising such a shock?
“That’s it?  Isn't there a cure?”
I knew from Aunt Frissy there wasn't.  
“Some doctors recommend  high dosages of Vitamin A to retard the progression, but I don’t really recommend it because of the increased risk of liver damage.  You can if you want, though, your call.”  
My liver was already suffering, and I was retarded enough as it was.
I wanted to vomit.  I felt like I had been dumped by the only girl I'd ever loved.
“So I can't drive, I'm going blind, and I can‘t slow this down much less stop it?  What am I supposed to do with myself?”
“Drink beer and have sex with girls.”
I could feel Mom blushing, but she didn't speak.  
Sounds like a plan to me, a good start at any rate.
So that was it.  It was official.  I could deny it no more.  An expert in his field knew beyond a doubt after looking in my eyes with a penlight for two seconds that I'd be stuck with this condition forever.  The whole “this is the first day of the rest of your life” bit had never meant anything before now.  In a way, I was relieved.  Now I knew.  It was over.  Guilty.  Sentenced.  The gavel banged and I could get started on my life sentence and the work of grieving, dealing, coping, adapting, surviving, reacting, adjusting, admitting, overcoming, outsmarting, preparing, pro-acting, anticipating, struggling, fighting, resisting, compensating.   
And living.
"To life!” we cheer, clanking our pints together.


  1. Hurray! That was the most uplifting awful story I've ever read!

  2. What a great doctor! Thank you Dave for sharing this story. I can't imagine how it feels to receive news like that. Id like to think that I would have a life affirming epiphany, but I doubt I would.

  3. "Drink beer and have sex with girls." Best course of treatment there is!