“Never, Never Land”
My Story of Interstitial Cystitis
I was naked. This was not an extraordinary circumstance per se, but its oddity was heightened by the fact that I was shivering against unforgiving white ceramic in the upstairs bathroom of my in-laws’ house. I looked down at the copy of Peter Pan open in my lap, the long one with nearly a hundred chapters. I had read all but two of them in my six hours of exile.
The bright watercolor illustrations of the three Darling children and their ageless companion tumbling through the air of their nursery like fools couldn’t transport me from the unromantic and unsalvageable reality of my condition. There went Peter, sweeping though the air—frozen in youthful bliss, while I sat—my youth fading into a bleak reality of doctor’s appointments, unattended family gatherings, diet monitoring, nights spent wide awake, and pain—always pain. “Interstitial cystitis.” I said the words aloud, the syllables slithering from my lips like a poisonous hiss. My mind was too clouded with the burning of imminent tears to appreciate the irony that the diagnosis had been delivered a mere day before the worst flare-up of my life.
Will I be able to have my own children? I wondered at the images of J.M. Barrie’s adventurers. People make jokes about pregnant women with healthy urinary tracts not having any bladder control. Will I even make it to the point of conceiving a child? To many, an IC diagnosis meant death to any kind of sex life. I winced at the thought and at the spasm that continued to rip through my abdomen. The remaining moments of my seemingly truncated life were counted down by the ominous tick, tock of the crocodile who had swallowed Hook’s missing hand.
A frustrated meow met my ears as the family cat seemed to have been locked into the bathroom where her litter box resided. She continued to moan frantically, batting at the fitted sheet hanging from the hook on the back of the door. I had grabbed this makeshift garment at five o’clock in the morning to cover myself on my precariously urgent mission to the toilet—an effort to spare my early-rising in-laws a voyeuristic encounter. The sheet tumbled onto the cat in cartoon fashion, starchy lace trim resting on her head like the cap Nana the dog was often depicted as wearing. My legs ached, leaden weights as I struggled to stand and free the poor animal. I opened the door a crack, and she slipped through—free—like I felt I would never be.
I turned back to my porcelain prison, pausing a moment before the washed-out reflection of my body in the long mirror over the sink. Locks of recently dyed red hair showered my pale chest like a sprinkling of fairy dust. Broken, I acknowledged, but maybe still beautiful. I perched on my stone stoop next to the window, facing the too-bright light and the sound of twittering birds oblivious to my torture. There was a world out there daring to savor the day without me—a whole world available to me should I care to go on with my life. It may have been filled with my own personal pirates, savage Indians, and pain, but it was mine—my world—my land—the only one I had. Definitely still beautiful. With trembling fingers, I cracked open Peter Pan for what I determined would be the last time. Someday, I thought, I’ll rise above all of this . . . and once I do . . . I’m never going to land.
* * *
Interstitial cystitis is a chronic condition characterized by a combination of uncomfortable bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain.
While interstitial cystitis — also called painful bladder syndrome — can affect children and men, most of those affected are women. Interstitial cystitis can have a long-lasting adverse effect on your quality of life.
The severity of symptoms caused by interstitial cystitis often fluctuates, and some people may experience periods of remission. Although a variety of medications and other therapies offer relief, there’s no treatment that reliably eliminates interstitial cystitis.