Jude's story

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Jude Clarke is a professional artist and art educator. She has shown her work in curated one-woman and juried group shows in Vernon, Kelowna, Vancouver and Strasbourg, France. Her work is held in private collections in Canada, France and other countries. She studied art at Notre Dame University of Nelson, Three Schools (Toronto) and the University Of Regina.

She worked as the Public Art Educator at the Vernon Art Gallery for seven years. Clarke lives and paints in Vernon, British Columbia.

Jude was diagnosed with Systemic Lupus when she was twenty-one years old.

The following is an excerpt from her book:

Late August 1976:

John and I drive back out west to Edmonton and then Vernon, collect our things and return to Regina where we find a small house to rent. One minute I'm fine, having fun - we leave the city, head out on to the prairie to check out the new landscape, or go and explore the university - and the next, my body just drains of all energy, goes weak. Weaker than weak. Like my spine is a pin, trying to hold me up. I feel sick to my stomach.

When the fall semester starts, I leave a drawing class one morning, vomit in the washroom and return to class. Later, I find John in his office and he drives me to our rented house. I don't understand any of it and I can see the uncertainty in John's eyes, too.

After waking suddenly - twice in one week - in the middle of the night, nauseous, barely reaching the bathroom before throwing up, I make an appointment with a GP, recommended by the Women's centre at the university.

I'm sitting in her office and she's chomping on peanuts (the odour permeates the room). She's telling me "I can't just send you to a rheumatologist. How will I look if you don't have rheumatoid arthritis? I have my reputation to think of. Your hands don't look arthritic."

I say nervously, "but my joints hurt all the time and I'm throwing up for no reason." She smiles in a way that I find irritating, "are you homesick?""No!" I'm in love you idiot."I'm going to give you a prescription for Valium, twenty 2mg pills, and no, I don't do routine pap tests until your thirty."She doesn't order any tests of any kind.

Tears are streaming down my face all the way home on the bus, and I'm thinking, well, it's official now, I'm nuts. When I reach our house John isn't home yet and I stand in the middle of the kitchen with the red linoleum floor, and slowly turn round and round, stomach constricting, heart emptying.

We call Dr Patrick in Vancouver and he says to contact CARRS. They will refer me to a rheumatologist. And to find another GP immediately.

I am referred to Dr McMann at the Rheumatology Clinic in Regina. In the waiting room, I see a lot of older people with gnarled hands. Dr McMann asks me reams of questions which seem unconnected. He says something about a "butterfly rash" on my face. I have no idea what he's talking about. He doesn't explain and I don't ask him to. Is that sympathy I see in his eyes? Why sympathy? I give him what I think is a neutral, everything's ok kind of smile, and go to the lab holding a requisition for blood tests in my hand. After several vials of my blood are taken, John and I go home, none the wiser.

End of Fall term, 1976:

We're sitting in his office looking at my drawings spread out on the floor around us. Walter Stahl, my instructor, is saying, "you're okay, pretty good, but you're probably never going to set the world on fire." A small smile accompanies a small wink.

Little does he know, nor I for that matter, that the world already is on fire. It's been set for me. There's a wolf running ahead of the flames through the dry prairie grass. He's ravenous. He's almost upon me. Even now he's reaching out a hooked claw, and with feral precision splicing my skin, clamping his jaw on bone joint. Igniting red pain. Arthritis. I am twenty, my soul and body unprepared for the wildfire to come. My bones are kindling; it is just a matter of time, it's only going to take a small shift in the wind for the wildfire to catch up and engulf me.

Later that night, hurt, I tell John about Stahl's critique.He asks, "Walter who?""Walter Stahl""Walter who?""You know, my drawing instructor. The one who . oh."We exchange a look.John says, "Exactly."

December, 1976:

A few days before we're to go to Vernon for Christmas, we receive a bill from Dr McMann's clinic. We are out of province; otherwise the bill would never have been mailed direct to us. There is a fee and typed beneath that: suspected Systemic Lupus Erythematosus. My heart stops. John's face pales and then he becomes furious, "God Damn it, they send a possible diagnosis on a God Damn bill!" Systemic Lupus Erythematosus. Those three words are like gunshots blasting into our lives. We have never heard them before but they sound terrifying.

Wolf is closing in.

John calls the clinic and speaks to Dr McMann's nurse. She is mortified, flustered. The doctor can't see me in the next couple of days, but as soon as we get back from our holiday, we should come right in. We stuff it all inside and head for my parents in Vernon. Mom says later, that when she first saw me, she was alarmed - she'd seen me just four months ago and I'm even thinner now. My joints are aching. I'm pale and tense. And cold. I'm always so cold.

My father is a pharmacist and he has a Merck Manual in the house. But Dad's been retired for almost six years and the book is outdated, had been published in the '50s. The four of us are sitting in the living room, passing it around. Everyone is being very quiet. Not saying a word, not looking at each other. I'm sitting on the floor in front of the fireplace poking the flaming logs around with the iron poker. When John passes the manual to me and I begin to read, I don't understand most of the medical terminology, but I do understand the words which say roughly, Until recently, lupus patients could expect a prognosis of five years but now, there is data to show most patients are still living , unless they have kidney or central nervous system involvement, ten years after diagnosis. Then the words blur and look like small black bugs jerking their way across the page. A glowing ember spits from the fire onto my jean leg. I flick it off and smash it out with the poker.

Most patients. Not all. But I haven't been diagnosed. There is still that.

Valentine's Day, 1977:

I am at the University all day making clay bowls. The finger joints hurt more than usual as I prepare the wet clay, knead and whack hunks of it against the tabletop, listen for the sound of the last air bubble popping. I form equal-sized sphere's in my hands, carry one over to the potter's wheel, settle myself on the seat and start the wheel turning with a foot-kick. Tiny bits of grit burn the edges of my hands as I press the clay, centering it on the steel disc. Soon, both arms begin to ache from wrists to shoulder blades. I continue making bowls until I've completed the assignment, then pack up quickly and leave for home.

Later in the evening, the pain sharpens, and spreads into my chest. We try to distract ourselves - begin watching the movie, Love Story, from our foamy on the floor, but halfway through John turns it off. We've seen it before. We know how it ends. The pain is unbearable, like a knife twisting inside my heart with every breath I take. It's worse when I lie down. John sits up with me all night, stroking my back.

In the morning we drive straight to Dr McMann, at the clinic. He listens to my heart and after x-rays are taken, sends us to the hospital. Diagnosis - pericarditis - inflammation of the lining surrounding the heart. I'm given a 100mg of an anti-inflammatory drug called prednisone, and two hours later, the pain is completely gone. Every small breath feels sweet and pure and painless. I finally sleep.

Over the next two days, my doctor asks me more questions and orders more tests. The finally the results are conclusive.

But with this terrible knowledge comes a strange kind of solace. It is official. I am not nuts. Every odd physical occurrence over the last four years can be explained. Can be validated.

A painter's life and work, under constant ambush and torment by the disease Systemic Lupus Erythematosus, is described with an insistence on love, memory, and creativity. Unique both as autobiography and as encouragement, Jude Clarke's graceful, poignant portrayal is accompanied by full-colour reproductions of her paintings reflecting her personal growth during her long battle with Lupus. Illness and despair find their counterbalance in Clarke's exploration of the roots of self in memory, place and family.

The perfect book for those who suffer directly or indirectly from this difficult malady, The Language of Water is also a compelling work of literary autobiography that examines the intricate issues of women's health and creative expression.