My story
Wind on my legs
This is a personal account from Sheri Decker, a longtime Psoriasis Foundation volunteer and staff member and former secretary of the International Federation of Psoriasis Associations
A personal perspective
This is going to sound incredibly silly, but it's true. When I felt the wind on my legs that day, it triggered imaginary sprinting, leaping cartwheels. I became a 16-year-old cheerleader again in my twirling, short, pleated skirt. It aroused such glee it was absurd, and all because I put on a pair of shorts and went for a walk.
What's going on?
Psoriasis forced itself upon me at age 28 and literally within a few days turned my seemingly flawless existence into shambles by stamping mysterious lesions randomly over my body. I shook the family tree to find someone to blame. No one fell from its branches. I searched for others marked by its distinctive lesions. No one emerged. I felt so alone—isolated because my skin was suddenly so foreign and I didn't know why.
I couldn't fathom why the doctors didn't cut it out, burn it off, give me a shot or a pill. Instead they ordered, "Rub on what smells like street-paving goo and sit in the sun!" I lost my cool. "What is this? Voodoo? There is no cure? There has to be a cure! No one could be expected to spend the rest of their life with this curse!"
I surrender
Over time, "curse" and I slowly, painfully negotiated our coexistence. Smugly, it settled in, hardly noticing my brutal assault with dermatology's best. Physically, it caused despair, but eventually that was minor compared to the emotional turmoil it created.
Though my personal struggle with psoriasis was difficult, the public's misunderstanding of skin disease became a far greater concern. My first few times on display, I felt like an innocent prisoner testifying, "I didn't do anything wrong!" But those hideous, ruby-red lesions, sloughing suspicious contagion, were convincing evidence, and the jury—Joe and Mary Public—didn't buy my testimony.
When normal-skinned, my appearance was predictable. There wasn't any question about my physical acceptance by society unless, of course, I chose to be rejected. Now, with patches of psoriasis, how the public accepted or rejected me launched extraordinary anxiety and, it seemed, I had little or no control.
For months, I remained headstrong about my blamelessness, always believing those good citizens would understand this was not my doing and treat me as they did before. But the public's assumptions about what was wrong with me were inexhaustible, running the gamut—things like, I must be unusually high-strung, stressed out, have bad nutrition or poor hygiene! Ultimately, my self-image eroded to the point that I slipped to the side of the accuser, condemning myself, and still clueless as to why this was happening to me.
The stares, the mute glimpses of disgust, the "What did you do to yourself?" were steadfast. Envy of normal-skinned people, prancing around in their flawless wrapper, became a silent obsession. I surrendered.
The cover-up
My leg psoriasis was always the worst-typical inflamed lesions with scads of scaling. Hiding, I quickly learned, was the easiest path for returning things to normal—or at least the illusion of normal.
Psoriasis wasn't a problem when concealed under clothing. Slacks and jeans, opaque stockings, leg makeup and thick panty hose became standard. I skipped miniskirts and loved knee-high boots. I cherished winter. Out of sight, out of mind. The gawking ended and my anxiety eased. My self-image recovered. My legs never saw the light of day. Gradually, I grew not to care and 15 years slipped by.
Then, after all that time, something quite unexpected happened. The psoriasis on my legs dramatically improved. I was stunned and began to entertain the possibility of living lesion-free. In fact, it was the first time in a long time I even really looked at my legs. I started to coax psoriasis into retirement with moisturizers and the sun and found it working for once. Then, one day, on a daring break from routine, instead of my jeans, I slipped into shorts for my daily three-mile walk and, oh, that wind!
Forgotten sensations
As I stepped out on the road, the first conscious sensation was the wind on my bare legs. It was so foreign, so shocking. I had to look down several times to make sure the swirling and swishing was air and not a pair of ghostly hands massaging me. An erotic nakedness flooded my legs with freedom and my heart with joy. I imagined myself a ballerina doing pirouettes simply to create an emancipating breeze.
My walk was pure exhilaration—light, almost prancing. Showing off my legs, free at last, from binding fabric. Other walkers/joggers passed unaware of the party going on. "Look, look," I silently shouted, "a leg jubilee." But they were so unobservant, not noticing my newfound freedom, and they were the ones who forced me undercover in the first place!
Every day, I reached for the shorts instead of my jeans. Shorts became daily attire. The minute I got home from work, I put on my shorts. On the weekends, I lived in my shorts. I went shopping for shorts. I wore shorts shopping. I donned shorts in the rain, on the golf course, to the party. Everywhere—overdoing it.
Friends and family were shocked at my snappy new attitude and attire. I was shocked at my snappy new attitude and attire. It was so frivolous, and dangerous if it grew familiar. What if my psoriasis revived and then what? Who did I think I was, anyway, flashing my legs around as though I were normal? I should know better. Such frivolity is risky where psoriasis is concerned, and suddenly images of Schwarzenegger sneering, "I'll be back," flashed on the big screen.
Without warning, depression crept in as silent as my cat, smothering my newfound confidence. How could such a simple event, feeling the wind on my legs, cause such elation and then despair? I probed my emotional well-being. I intellectually picked apart my acceptance speech made to psoriasis so long ago. How did I give in so easily? When did I become so proficient at hiding that it became the norm?
The finagling over psoriasis all those years suddenly read like a bad novel. So much effort, so many games. The sweating under long pants in 100-degree weather, the two pairs of panty hose over camouflage makeup, the stench of coal tar in the bed, the trail of dead skin on the neighbor's living room rug, the falling into the lake with my clothes on—"Oh clumsy me, might as well swim in my jeans since they're already wet." Sounds ridiculous, but that kind of manipulation becomes spontaneous. The mind is always maneuvering to not give the secret away.
The freedom of functioning without psoriasis was so much fun, while the reality of hiding it for 15 years was so phony, almost surreal. Suddenly, pirouetting seemed stupid, and I became engulfed in serious sorrow. Being depressed is depressing.
Coming to grips
Years have passed since this all occurred, and I've had a long time to think about it. I'm glad to report my depression is gone. The details of the tear-stained pillows will go undescribed, though I must say, if I come back in my next life as a country and western singer, song-writing material won't be a problem. Grabbing one's bootstraps is a wondrous exercise.
It's more interesting that I'm still in my shorts—all the time. As predicted, my leg psoriasis strutted back in as though nothing had changed, but it had. I can't put on a pair of jeans. Sometimes I think it's maturity. I don't really know why, I just do it.
I catch the "peeks" in the grocery store and wish my jeans were in my pocket. How about pants/shorts made of Venetian blinds? I feel people moving away. I wish I could explain. There isn't enough time. I feel marked. I am. I still wear shorts and accept the public's misunderstanding.
My friend "Stig"
The normal course for psoriasis is to swing from better to worse, worse to better. I suspect people with psoriasis swing from "stigmatized" to "normal," "normal" to "stigmatized."
This was my first swing to "normal," and I was terrified to let go of my companion "Stigma." The sensations of the wind jolted memories of when I didn't even know old "Stig" existed. Abruptly, I was stunned how psoriasis carved new trails for my life's trip: molding images, forcing decisions, rigging reactions, staging scenarios. Psoriasis is such a rude intruder, crashing in, causing havoc and leaving without even saying goodbye.
Today, I'm certain the shorts are a small, but symbolically important, reclamation of control. The wind was the stimulus. Psoriasis doesn't dress me anymore. Well, not my legs anyway. I cling to long sleeves, rarely allowing my arm psoriasis into view. I ponder this: it's okay for your legs to be out, but not your arms? Help!
Some say that people who flaunt psoriasis like an exhibitionist do so to prove that psoriasis is unimportant. They're kidding themselves, you know, because psoriasis is powerful stuff. It demands relearning to live in society, whether you want to or not. Maybe the shorts are my litmus test to see just how powerful psoriasis is and the public my thermometer—"Oops, getting too many stares, better back off. Come on folks, name your price. Two lesions? How about six? Okay, I'll get back in my jeans for 10 lesions and not one lesion less!"
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