It’s 3 a.m. In five hours, all eyes will be on me.
I’ve planned an extra hour to get ready today—four hours, instead of the usual three every morning for the past 15 years, to manage my psoriasis.
I should be reviewing my big presentation this morning, but instead I’m thinking of a cover story (maybe a gardening mishap or a brush with poison ivy?) to explain the bandages hiding the latest flare-up on my hands.
I’m on fire—burning and itching from head to toe; scratching and picking at the crusty scales covering most of my body. I switch on the lamp to a mess of ointment and blood-stained sheets. My pillowcase is soaked from the medicated oil that ran down my face and neck from under the miserably-hot plastic shower cap, and the floor is crusted with what seems like handfuls of pale and brittle rinds. I pick up my pad and pencil and write down a few lines before getting up:
A smoldering has turned the skin
That once the sun so softly met
And where upon a smoother plain
Rain like vanished lovers’ tears
Would once so gently glide
A constant ruffled wasteland now
And constant is the urging fire
That lies beneath the nagging calls
To tear away this morbid hide
I remember as a child, hearing of leper colonies—of monstrously disfigured people quarantined in Hawaii—and weighing with my simple logic whether they were concentrated there to be cared for or to be hidden away from the sensibilities of normal people, or a combination of the two.
That image returns as I struggle to conceal my own disease—and to hold onto a job that comes with the insurance I’ll need to receive the biologic drugs I’ve talked with the doctor about, that I hope will soon mitigate the suffering and salvage my life.
I’ve been haunted all week by the thought of this presentation to the client and management; horrified that I’ve been told to wear the new uniform: a black short-sleeved polo shirt embroidered with the company logo. My co-workers sometimes call me “Mr. Hollywood” because of my designer suits, impeccable grooming and trademark dark tan. My darker secret is that my wardrobe and carefully styled hair are camouflage; my tan, the effects of UVB phototherapy treatments. Now the new shirt threatens to blow my cover. I’d worn it to the office once before and noticed the look of revulsion on the manager’s face when she saw the armrests of my black office chair smeared with white flakes.
The towels in my bathroom are all marked by telltale pink discolorations from contact with the medications. I remove the shower cap and start the laborious process of debriding the partly loosened skin from my scalp with a comb. Each comb-through produces a glop of oil-laden skin and hair, leaving raw, bleeding, seeping wounds that will tighten like bands of shrink-wrap throughout the day—a painful reminder that my desperate scraping to provide a smoothed canvas upon which to do my handiwork in order to hide my hideous appearance, is further damaging my skin as well as costing me more of the precious hair needed to construct my disguise.
After shaving and showering, I apply the steroid ointment to the lesions covering large areas on my feet, legs, trunk, arms and hands; the gel on my scalp; and the cream on my face and groin. I forego smearing on the coal tar on workdays because of the strong odor.
While I wait an hour for the medications to absorb before beginning my cover-up round, I begin to look over my presentation; but my thoughts return to my cover story. I decide to go with a weekend BBQ accident: the burns on my hands would obviously need to be bandaged, and I can joke that the burgers were burned worse than my hands.
My cosmetic work usually begins at the hairline, a bright red halo where I do my most meticulous detailing with a makeup concealer; followed by a brown bald spot cover-up powder on my reddened scalp and a strategic hair styling and hairspray to keep it all in place. Then comes a full body check for bleeding spots followed by a coat of moisturizer. While waiting to dry before getting dressed, I change the sheets and vacuum the place.
I wrap my “burned hands” with gauze and put on the black shirt that I’ll be furtively brushing the white flakes from all day, remembering how I purposely ordered a size larger in hopes that the sleeves might be a little longer to at least partially hide the unsightliness around my elbows. I can only hope now that the spontaneous bleeding that sometimes trickles down my face from my scalp doesn’t happen while I’m under the spotlight.
I finish dressing and pack my briefcase: Band-aids, concealer, gauze, mirror, moisturizer … I must be forgetting something … Oh yes, the presentation.
I look out the window—hoping no wind or rain will threaten to expose me; look in the mirror one last time, and head out the door.
R J Sobel is a writer and poet living in Southern California. The title of the poem in this story is “A Constant Fire” from the book, “Leaves of Entropy” by R J Sobel (2016, ARS|Soliana Written Word Album).
The opinions expressed by National Psoriasis Foundation Blog conributors are their own and do not reflect the opinions or positions of the National Psoriasis Foundation. The information posted on the NPF Blog is not intended as, and is not, a substitute for profesional medical advice.
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