A Sharp Stick in the Eye
By Jessica Harper
"I took a dubious train ride to Connecticut, and gave my anxious parents some good news about the scary medical procedure many of us face."
When I travel, my visual challenges make it necessary for me to depend on the kindness of strangers: I ask people for help all the time. I find that in the overwhelming halls of Penn Station, this is especially crucial. Recently, before boarding a train to visit my parents in Connecticut, I asked someone if my train was on time, someone else how to scan and print my ticket, and yet another person where track 17 was. As it turned out, I needn’t have asked the latter question. When the train was announced, I was swept up in a massive herd of fellow passengers and virtually carried in the appropriate direction.
Unfortunately, the “quiet car” was full, bursting with silent people. In the rest of the train, large families trolled for seats, people squawked into cell phones, electronic devices leaked game noise, and food smells wafted. Thanks to my aggressive behavior (shadowing a big guy who bulldozed his way through the crowd), I secured one of the few remaining seats in a decidedly un-quiet car.
I glanced at the lady next to me and, in that mini-assessment you do with strangers, I thought, she’s older, a grandmother, dyed hair, nice coat. It took me a few minutes to realize that she could easily have summed me up the same way.
A young man approached us. “Ma’am, is your husband seated in the car ahead?”
He was addressing the other lady, not me. “Yes,” she said, cautiously. The young man had not washed his jeans lately, and he smelled like an avid drinker.
“I’m sitting next to him, if you’d like to switch seats,” he said, as intensely as if he were notifying the lady of a lottery win.
Mrs. Nice Coat gratefully made the switch, leaving me seated with Mr. Dirty Jeans, who snapped open his laptop and a thermos containing something with a high alcohol content. He played a video of modern dancers in a frenzied performance, and he moved with them, as much as one can in an Amtrak seat. He danced with his hands and upper body, feet tapping and stomping. He’d stop for a thermos break often, then he’d beat his tray rhythmically, muttering “I love you, Leonard Bernstein.”
The activity in the seat next to me was distracting, but that was not the reason I missed my stop. The conductor neglected to tell us where we were when we paused in Old Saybrook. When questioned later, he said, “Oh, our loud speaker doesn’t work too well. Usually I walk through the cars and tell people what stop is next.”
“But you didn’t choose to do that today?” I asked, channeling Cruella DeVille.
“Nope,” he said, cheerfully oblivious to my deadly tone.
So, I (and other pissed off passengers) disembarked at New London, a stop well down the tracks from our desired one.
The good news about this dubious train ride was how delighted my ninety-something parents were when I finally showed up and regaled them with the (slightly exaggerated) story of my travels. They get an emotional charge from their children, from our humor, our accomplishments and the events of our lives. But they also feel our pain, when we have it, sometimes even more than we do ourselves. When the gaiety surrounding my arrival subsided, their faces clouded with sadness.
The fact that three of their children have battled vision problems due to PXE has affected Mom and Dad deeply. They had just heard that my PXE-affected little brother, Sam—he’s 55, not exactly small, but still my little bro—has been told he needs to start Lucentis injections. As our doctor (Steven Schwartz of UCLA) told him, he’s not in critical condition, but, “There’s a fire in the yard and we can’t let it get in the house.”
It greatly saddens my parents (and me) to see my brother finally make this transition. As you all know, a diagnosis of PXE puts you squarely before a threshold you hope you never have to cross, beyond which is a life of regular medical care, and, most likely, vision loss, among other things. Sam has been anticipating this moment for years, and now it’s here.
I wish he could have been spared, that he’d have been a luckier PXEer. But there is some good news about this, which I was able to share with Mom and Dad. (I mean, not great news, like a cure for PXE, but…I keep wanting to say, better than a sharp stick in the eye!) I know from experience that the treatment has gotten a lot more patient-friendly.
When I had a series of Macugen injections—24, but who’s counting?—a decade ago, I found them extremely uncomfortable. When I recently had Lucentis injections, they were very different. No more Betadyne wash, which left your eye so irritated it caused sleeplessness. The needle is thinner, smaller, so the injection itself is virtually painless and quick, and there’s no Long John Silver eye patch afterwards. The whole procedure is much less traumatic. While I can’t say I’m looking forward to another shot, I’m not dreading it as I used to.
I told my parents this, and their faces softened some. For those of you who may be waiting, as Sam has, for the shoe to drop and the need for injections to arise, take heart. The shots ain't what they used to be. They're not nearly as bad as they sound. Tell this to those who love you. It might help a little.