By Jessica Harper
Jessica is an actress, singer, songwriter and author - and a treasured member of PXE International's Board of Directors. She and her brother Sam were diagnosed with PXE as children. Join Jessica here in Harper's Corner for a chuckle and a change of pace!
I love PXE International. So when they asked me to write a column for this newsletter I did not just say yes, I said YES! Then I sat down and tried to think of what the heck I could write that would be of any use to anyone.
While I figure that out, I think I should start with a mini-intro of who I am, so you won't also be wondering what the heck I could write that would be of any use to anyone. I actually am qualified, at least on paper, to write this column, for two main reasons: I'm a writer, and I have PXE. Allow me to briefly elaborate:
Let's see…I was diagnosed at age 11, after my mom noticed skin lesions on my neck. The dermatologist, by way of explaining PXE, referred to "The Rubber Man" in the freak show at our local amusement park, whose skin was unusually stretchy. Thrilled by the uniqueness of my condition, the doc invited me to visit a room full of his colleagues at Northwestern University and do a show and tell. My mother declined on my behalf and we went home to rub my neck with cortisone cream and wrap it in plastic wrap each night, per the advice of my enthusiastic doctor. Cut to: the college years.
Having long since given up on the plastic wrap, I grew my hair long to cover my "rubber neck," as my pesky brother called it. I only recall one unpleasant PXE highlight from that time. A senior named Sarah flung a comment in my direction about "people who don't wash their necks." I may or may not have stuck my tongue out at her. Cut to: professional life.
I (miraculously) got into the Broadway cast of "Hair," kicking off a long acting career, during which I pretty much forgot about PXE, living in happy ignorance of the impact it might have on my blessed life. Later, when I got into film work, I had trouble getting insured ("You have…what? PSC?") and with costumes that would conceal my neck in close-ups. But, hey, I got by, and I was living the life. Cut to: parenthood.
Luckily I never got the memo about how PXEers are not supposed to have children because childbirth could kill you or something (false), so I got married and now have two fantastic daughters. I eased up on acting after the second child (too damn tired!) and started writing children's music (I recorded seven CDs) and then writing books for children.
Occasionally over the years, an ophthalmologist would mention that PXE might affect my eyes. But my vision didn't crash until I was fifty. One day, like a missive from an angel, I got a PXE International newsletter in the mail, out of the blue (I did not yet know them) and in it was an Amsler grid. I looked at it with my right eye, then my left. And I freaked out.
Thanks to Dr. Stephen Schwartz, a PXE expert and a kind gentleman at UCLA's Jules Stein Eye Institute, and twenty-two Macugen injections (but who's counting?), my vision is now stable but damaged. I can't drive anymore, but I can still read, although very slowly. I have plenty of peripheral vision so I'm in pretty good shape, and things could get better, or they could get worse. We'll see. (At least, I hope we will.)
Meanwhile, I have a new book for kids that just came out ("Underpants On My Head"), I'm writing a blog on my website and another blog and I'm writing a book of humor and recipes called "The Crabby Cook Book," which will be published next year. And I will be writing this column. I'm thinking it will be a lively combination of PXE-related issues and totally random, interesting stuff, like, for example, a discussion of Groundhog Day, which is a holiday that may not require a Hallmark card, but does have an impact on all of us who are wondering how much longer it will be eleven degrees.
Of course, in Los Angeles, where I live, Groundhog Day came and went (I'm told it was February 2nd) and nobody noticed. We can't afford such trivial ceremonies in this big, fat, broke state, and also, since it's currently eighty degrees, discussion of seasonal changes here is a fatuous time-waster.
Groundhog Day was, however, acknowledged in many other more with-it locations, like Canada. Groundhogs in three locations there predicted six more weeks of winter. Of course, I could have told you that, and last time I checked, I'm no rodent. I mean, it's Canada, so, duh.
In Staten Island, however, it's a different story; you might actually see a crocus in New York before too long. But the G-Day ceremony there, featuring a recalcitrant groundhog named Staten Island Chuck, turned into a mini-melee when the g-hog bit the mayor. Apparently not ready for his close-up, Chuck refused to come out of his hole. Bloomberg tried to lure him with a corncob, which resulted in the attack. (What, Chuck was holding out for sushi?) Luckily, the animal was pronounced rabies-free and the mayor resumed his less-challenging duties later in the day.
What I want to know is, how do they select these groundhogs? Don't they vet them? You'd think they could find, in N.Y.'s vast pool of highly qualified g-hogs, one that wouldn't bite the hand that feeds him.
But I digress….
Whatever the weather, I'll be back in the next newsletter. Meanwhile, don't offer a groundhog a corncob. And if you're in the mood, visit me (or email me a comment) at my website, www.jessicaharper.com.