Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.


May 2010

Eye Drop Aftermath

On the day of my diagnosis and the sparkly intro to the world of RP, people kept putting drops in my eyes.  Everyone seemed to want to make sure that I had received enough drops to ensure maximum retinal view.  I think I had five rounds of drops total; one set of numbing drops and four sets of dilation drops.  It was the latter set that decided to stick around and fuck with my head for a while.

When I woke up the day after Dx day and my eyes were still sore and my vision was still blurry, I wasn’t surprised and I was preoccupied with my friend Lisa, so I didn’t give it much thought.  That night, going to bed with blurred vision, I figured it must be all the extra drops and that my eyes would be back to  somewhat normal in the morning.  That was not the case that second morning, nor the third, nor the fourth.

After days of wearing sunglasses everywhere I went, outside and inside, including to Lisa’s fathers memorial service, I decided it couldn’t possibly be normal for someones eyes to stay dilated for five days; I called Dr. Heckenlively and he called me back within thirty minutes.  He asked about the extra drops and told me it wasn’t unusual for the eyes to stay dilated for a few days after multiple rounds of drops.

A few days?  Try seven.

Wishing for Syphilis

Syphilis?  I could have Syphilis rather than a life sentencing, incurable, degenerative blinding disease?  Ok.  I’ll take syphilis.

But of course I didn’t have syphilis; I just wished for it for those few moments.  Can you imagine having a disease that scared you so much, you would wish for an STD to take its place?  Talk about grasping at hope straws.

I can’t remember if my dad took me straight home after the diagnosis or if I had dinner with him.  I don’t remember if I called anyone or if I had a hard time falling asleep. I think I must have been alone.  I remember the day after.

I woke up to a world still blurry and eyes  burning; my pupils were still reeling from the effects of too many rounds of drops. And then my phone rang.  It was my best friend Lisa telling me that her father had died. The RP thing instantly took a back seat.  Even in the thick of it I understood that suddenly losing a father was bigger than losing vision; I would have a lifetime to mourn the gradual death of my eyes.

Dx Day: The Man Himself

After the Clockwork Orange experience, I was dismissed for lunch.  I walked out of the test room, with help from the tech, and met my dad in the waiting room.  I felt pretty traumatized at this point and my eyes were sore and watering and screaming at the assault of daylight.  We went into Westwood Village and ate Greek food and I tried to keep a smile on my face while we waited for the final appointment of the day; we were actually going to meet Dr. Heckenlively.

When we returned to Jules Stein, we checked in at a huge reception desk in the Retina Clinic and I was taken into another room for more drops; this was the fourth set of dilation drops I had received during the day and apparently this last set was just for good measure.  My pupils were not happy. Back in the waiting room, I had to keep on my sunglasses and couldn’t read a magazine, so I just looked around at the other patients waiting for their fate to be served up by the illusive Heckenlively.   There was no pattern to the population; no predominant age, race or gender.  It was that day I realized that RP doesn’t discriminate.  There aren’t many of us who have it, but we come in an array of  packages.

One person from that waiting room stands out most clearly in my memory.  He was a young black guy, maybe in his twenties, tall and athletic looking.  He was sitting between two older people who looked like parents; his head was bowed and his hands pressed to his mouth.  I knew he was a first timer, like me; I knew he was waiting to be told that he was going blind and I knew that he, like me, had realized that the months of hoping for a different outcome had been fruitless.  It was the first moment that day that I didn’t feel so all alone because I knew he understood exactly how I had been feeling all day.

I think we must have waited at least an hour in that room, watching men in white coats disappear behind mysterious doors and patients with anxious or terrified faces startle at every entrance or announcement.  Finally they called my name and my dad and I were ushered into one of the mysterious rooms; I almost felt guilty leaving everyone else behind.  The room was dim with what looked like a dentist’s chair propped in the middle of the floor.  The nurse told me to sit there, and I was tempted to tell her to go fuck herself, but I looked to my dad for some courage and took my allotted place.  The nurse left and about ten minutes later, the door opened again.

Dr. Heckenlively wasn’t what I had imagined or hoped he would be.  He was tall and middle aged lean, with a Hitler mustache and a cold demeanor. I knew instantly that this man was not going to be my savior or my champion or my friend; I was just another blind number. I remember he shook my hand and then my dad’s and then sat down to take a history.  We didn’t have much to tell him; I was the only person in my family who even wore glasses.

After the history, he tuned to me and flipped the dentist’s chair back, coming at me with one of those super power flash light looking things that eye doctors tote around.  He examined my retinas with that light for maybe five minutes, flipped the chair back into place and told me it looked like I had RP, but he would take a blood sample just in case to rule out syphillus.  Then he gave me a slip of paper with a list of vitamins that he said may or may not help to slow the progression of the disease, and he left.

That was the one and only time I would ever meet Dr. Heckenlively.

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