Essay Non-Fiction posted January 24, 2014

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Living with psoriasis

Dealt a Crappy Hand

by Spiritual Echo

Many people with disabilities inspire others with their courage and positive attitude. I am not immune to the heroism and motivation they evoke in people who have never been forced to deal with the challenges they have been fortunate to escape.

Perhaps because my disability has not kept me from living among the healthy, I've been unable to treat my issues in the same way. Mostly, I've considered it as just plain bad luck.

Psoriasis first appeared on my elbows when I was twelve years old. It would be many years before I understood this disease. The general public had never heard of the disease back in 1962. My middle-school gym teacher sent me to the school nurse who proclaimed the 'ugly rash,' needing confirmation that it wasn't contagious, 'just a patch of dry skin.' No one suggested treatment or referred me to a dermatologist, but the seed of self-disgust was planted by the teacher, the nurse, and reinforced by my classmates who for a while called me 'The Leper.'

Stress is a major trigger for outbreaks. My parents were separating. While this was almost a joyful prospect, having grown up in a household filled with all forms of domestic violence and abuse, it still meant that I would be moving, losing all things familiar and all my friends. Being in the throes of puberty also contributed to the initial out-break.

For the next dozen years, the rash came and disappeared, usually decreasing in severity during the summer, but by this time my wardrobe consisted of long-sleeved shirts and jeans. At twenty-four, when I got pregnant, the rash became aggressive and completely covered my arms and legs. The only saving grace was that the psoriasis did not creep onto my face or hands. It would find those body parts later in life. It was the first time I was referred to a dermatologist by my GP.

The specialist was the first person who put a label on my affliction. She gave me very rudimentary information and wrote a prescription that my husband and I could ill afford. I still remember the name of the cream that was prescribed--'Betnovate.' With the doctor's reassurance and the soothing ointment in my medicine chest, I felt that within days I would likely be cured. It was years and dozens of specialists later that I came to terms with my suffering, shame and social ostracization.

Some doctors would give me a blank stare and just dismiss me with whatever prescription was the flavour of the day. "There's no known cause and no cure. You need to learn to live with it."

One doctor, seemingly thinking he was offering me some hope, assured me that after menopause, I'd likely have a spontaneous remission. Imagine how reassuring that comment was to a woman in her thirties. But he was wrong. When menopause came along, the demons inside me revved up and attacked me with a severity that made me pray for death. It was no longer just ugly and itchy, I was in agony.

In a normal person, skin cells recycle every twenty-eight days. The scaly, surface psoriasis rash erupts because my skin cells can regenerate within five hours, bubbling to the surface and causing grey, silvery crusts that crack. These eruptions can explode on the bottom of your feet making walking excruciating. When it hit my scalp it felt like I was wearing a motorcycle helmet and nothing could keep me from literally scraping it off my head.

I've had my feet peel off like I am removing a pair of thick woollen socks and my hands have looked like someone with a severe sunburn, skin stripping off the palms and leaving me incapable of washing my hands in anything other than near cold water.

For the most of my life, my active war against my own body's over-active immune system has included in-patient hospitalization as well as a three-year stint of daily UVA (ultraviolet light treatments) that necessitated my driving to a hospital thirty miles from home each morning, standing naked in a light chamber that resembled a high-tech shower stall, returning home and driving fifty miles to work. The treatment had moderate success. I've purchased my own sun bed, spent close to fifty thousand dollars on creams and ointments, gone to bed wrapped in Saran wrap, smelling like coal tar and taken internal medication that can suppress the immune system, but can also damage internal organs. There were many times I simply gave up and let the disease rage and take over. Fifty years of war is a long time to battle a losing cause.

The best I could do while enduring this 'gift' was to develop a sense of humour. The sun helps, especially in combination with salt water. While on a mini vacation in Miami with three girlfriends, an Adonis jogged by and I, laying there in splendour, exposed with little to the imagination, invited the man up to the condo to play 'connect the dot.'

There were regular cruel comments hurled my way, but I have chosen to forget the woman who screamed in terror as I reached out to grab her falling toddler and the slurs about my sloth and poor hygiene.

I've had an unusual career for someone afflicted with a disease that is aesthetically repulsive. For thirty years I was a manufacturer's agent, selling high-end diamond and gem set jewellery to national chain stores, often brushing off the board room table, sweeping the scales to the floor when I finished my presentations. I credit myself with educating many people, assuring them that I was never contagious and putting the pimple on the end of a buyer's nose into perspective. I was successful, in part because I talked openly about my problem, but mostly because I was very good at my job, learning how to distract attention from my disability with ease, using my knowledge, my sincerity and always, my sense of humour when doing business.

Except for my lack of participation in pool parties or summer activities that would necessitate my stripping down, friendships were plentiful and most people accepted my psoriasis as just a fact of life. Sadly, I never did. This crap attacked every cell in my body. My toenails look like hoofs needing a drill to thin them out to ease the pressure and my finger nails are so thin they shred. When respectability demanded a polished look, I'd march off and have a set of false nails put on, throw on some diamonds and add more eyeliner to divert attention to my blue eyes.

I was married twice. The first husband was gone long before the disease took on strength. The second man suffered my symptoms. Some mornings I woke up early, for the singular purpose to brush out the sheets and ensuring that none of my loose skin was clinging to his body.

For all the issues we faced in our marriage, not once did he ever humiliate me or call attention to his desire, or lack thereof of me, based on my skin condition. But I stopped feeling attractive, and my shame was as deeply ingrained in me as this defective gene is in my cells. I didn't hide--really one can't--but I was not comfortable with my nudity. After my husband died, it became very easy to avoid mirrors and look at body parts as separated components, avoiding the parts I too found repulsive.

Not once since my husband died, did I ever think that I might have another chance at having a fairy tale life. By this time, I'd thrown more into corporate passion than I ever imagined I could find in a relationship. Even if I could have dealt with the depression that surfaced when I was out of sight from the public eye, there really wasn't one counsellor or psychiatrist who could have convinced me that I had enough strength to overcome the downside of being a lover or mate with my condition.

Over the last two years I've had two of the most threatening attacks to date. The scales dropped off, leaving raw skin. It was equivalent to a horrific burn. I couldn't walk without plastering my legs with a pound of Vaseline and wrapped in Saran Wrap to keep them damp enough that my skin didn't turn to leather, then crack , offering me a different kind of pain. The skin on my ears peeled off as if I was removing prosthesis'. The final humiliation came one day when I removed my bra and saw the crap on the end of my nipples.

"Now what?" I asked my GP. "What genius do I go to see to tell me that I need to learn how to live with this? Please don't waste my time with idiots. I can't do this anymore and I don't have the money for the injections."

Of course he sent me to a new dermatologist and this one, though thoroughly up to date, spent less than fifteen minutes with me. He wrote me out a year's worth of prescriptions after reassuring himself that I knew all the options and then said he was willing to send me to some authority provided that I kept the appointment. "He's an International expert," he said. But like the claims of every diner for the world's best coffee, I had very little faith in broad statements or over-stated credentials. On the other hand, I had absolutely nothing to lose.

A clinic exists within a half hour's drive from my home that does nothing but specialize in clinical studies. After fifteen minutes of relaxed conversation, my new dermatologist asked me if I was willing to be a guinea pig for a research project. After a full explanation of the possible side effects that include cancer and TB, and my agreement, I was taken into another room and given a full medical. Beyond my comprehension, I was accepted for the study and began to receive injections sponsored by the manufacturers of a new drug. I pay for absolutely nothing.

This drug is the third generation of a biological drug that is already on the market, but few people can afford. The earlier treatments cost approximately twenty-five thousand dollars a year. There is no claim for a cure and if the injections are stopped, there is the probability that the psoriasis will return; perhaps not with the same severity and maybe not at all, but few have the cash to support this treatment. I certainly didn't expect, and never thought I would be a candidate based on other medical conditions.

After my first injection, I immediately began to clear. By month three, I was completely free of psoriasis, if only for the duration of the clinical trial. My doctor occasionally tells me I'm very brave. I think not. Considering my depleted courage, I am left with nothing but gratitude for a reprieve.

We watch the likes of Stevie Wonder and Hawkins work within the world of their disability with grace and we experience the rewards for their music or brilliance. It would likely do me no favour to know they've felt like me, lost and imbalanced, tethered by limitation and so I gratefully accept their joyful inspiration. To this extent, I don't give myself credit for my own courage, my private suffering and the motivation I have given others by simply playing the cards I was dealt. I believe that we look at ourselves from the inside out. But for the first time in fifty years, I can look in the mirror and take stock of who I really am, beyond the scars and the tears.

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