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What Doesn’t Kill You

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    Beth remembered, with obsessive clarity, the day in 1975 when her daughter was diagnosed. It had been in a different hospital, but there was that same clinical, antiseptic smell.

    “What’s taking so long?”

    Beth didn’t answer her husband. She was itchy with impatience. The waiting room was awash with neon lights and pale blue, vinyl chairs on spindly black legs. Whilst Beth occupied herself with the baby, Brian stared at the floor, seemingly ignorant of the noise produced by Matt’s repetitive swinging of his legs against the chair. A doctor entered the waiting room.

    “Mr. and Mrs. Hudson? Will you follow me, please?”

    In his office, the doctor’s mouth moved as Beth tried to listen carefully, staring at the new words falling out.

    “Rachel’s intestinal blockage that you alerted us to, led us to do some tests on the nutrients in her system. Given that your child has been presenting a heavy and persistent cough these past months, I’ve tested her for cystic fibrosis.”

    “Cystic fibrosis? What is that?”

    “It’s a rare and genetically transmitted illness, Mrs. Hudson. It affects the secretory glands. They’re the ones that make mucus, sweat. The lungs are affected, the pancreas too, and hence intestinal blockages.”

    “And what did your test say, Doctor?’ Beth asked patiently whilst Brian remained quiet.

    “It was positive, Mrs. Hudson. Your daughter has cystic fibrosis. I’m very sorry.”

    “Oh.” Beth looked at her husband, Brian. He didn’t glance back. Instead he was staring just past the doctor’s ear. “So what treatment do you recommend to get rid of it?’

    “Well, that’s the thing. There is no cure. There is treatment, yes. What we call CPT or chest physio therapy. You’ll need to do this daily. And you should expect to administer large doses of antibiotics when infections take hold, to avoid what could become regular hospital stays. But Mrs. Hudson…” the doctor took his glasses from his face, and leaned a little closer to her. “I’m afraid, it’s a terminal disease. Life expectancy for a patient with CF is about… 18 years. Thereabouts.”

    Beth stared at the doctor. His words were fat and bulky in her mouth. As realisations followed thoughts, her heart began to pound inside her chest. She started to sob. Quietly at first, and then with vigour. The room was quiet except for her outpouring of grief. A door closed loudly in the hospital corridor.

    A distracting commotion in the corner of the room had silenced Beth, as she had turned to look at her other child. Matthew was occupying himself with the array of plastic body parts on display in the doctor’s room, where a half-body model exposed bakelite organs that fitted together like a jigsaw puzzle. A kidney. A uterus. A lung. Matt sought himself a task. Putting it back together.

    Beth had stared at her husband and then back at her son. All that Brian could muster in that heavy blanket of grief, was a bark.

    “Leave it alone, Matthew!”

    Both parents were carriers of the gene, but it was their combination that brought this on Rachel. Unfortunate, was the doctor’s terminology. The word had stuck in her mind, stubbornly repeating itself when she least expected it.

 

In my novel The Happiness Jar (excerpt above), I explore the effect of a terminal illness on a family. The roll on effect of one family member not having a full complement of years, and the quality of those years being ultimately tied to the success of medical intervention. A father, fighting his own Vietnam-war induced PTSD gives up and goes missing. A brother becomes jaded and has no thirst for life, and a mother embraces the heady falseness of religion, devoting her every moment and breath to ensuring her daughter’s last are the best they can be.

In light of this, I imbue my CF-inflicted character Rachel, with an infectious and adventurous zest for life. Her risk-taking pays off. It does not contribute to her early death at 27 years of age; rather, it heralds a grand life. She ‘grabs the bull by the horns’, and goes out with a bang. Her short adult life was spent travelling the world, and making a difference in her own backyard. Secretly, she recorded her happiest moments on individual notes of paper, kept in a jar that her mother finds after her death. Rachel’s legacy is the influence of her keen sense of life, on her otherwise healthy family, who perhaps could do with a little shake up in the motivation department. Rachel’s jar of happiness offers them a manual; a catalyst for change.

It wasn’t until after this novel was published, that I started my own health journey. Shortly after having my second child in quick succession at 40, I was diagnosed with AS. My doctor explained that Ankylosing Spondylitis is a form of spinal arthritis that eventually causes fusion of vertebral and sacroiliac joints. I can tell you that it hurts and it will rob you of your movement. I quickly learnt how to spell it.

The irony is not lost on me that I have written a novel of hope where the moral of the story is to get on with life, despite one’s health challenges.

There is no comparison between CF and AS. CF will try to kill you with every opportunity it is afforded. AS will only try to take your quality of life. The choice is clear, were we able to choose our disease. Life with AS is a breeze, compared to life with CF. However neither disease has a cure, and both have the capacity to render your life too painful to enjoy. With AS, I get a choice not given to those with CF. I get to decide how my disease affects me.

Upon diagnosis, I went through what everyone must go through. Denial. I truly went to every Rheumatologist appointment in that first year armed with alternate diagnoses, as I became friends with Dr. Google. Each time, he kindly and quietly drew my attention back to the MRI with the fusion already up to L5. It was a done deal, and all I had up my sleeve was time and drugs.

Every visit, he pushed biologics. As a lifelong hippy-at-heart, I point blank refused, opting for the naturalistic path and diet changes which had no clear result. I lost my love for food and got depressed, and so I eventually caved in, and accepted the weekly injection of Enbrel. Frustratingly, having waited a long time before giving in, it didn’t work, and so now I have just started Humira. We’ll see where that gets me. I do know that CT guided cortisone shots in the spine are the only thing that has worked so far. I know I will return again to a starch-free diet, but for now I want to explore slowing the disease with drugs.

After denial, I also had to confront the very easy alternate path of playing the victim, deciding that the effort of getting up in the morning was really just too hard, and to stay in bed and mope. This isn’t easy with a 6-month-old and a 2-year-old (at diagnosis). I have two very loud and happy reminders each day to choose a life of activity. As a writer, I also run workshops on occasion for children (and now adults) on how to capture happiness in a jar, to manage your own wavering handle on life’s elusive happiness. The adults often cry. The kids beam with the giddiness of ignorance about what is to come. Its grounding.

What my writing has taught me is that despite having a debilitating disease, I have control over my life. In that glorious way that life imitates art, in writing The Happiness Jar, I have given myself a manual to return to, when I think I have it tough. My fictional departed character Rachel is my mentor, my guide on how to embrace life. I choose hope, action and joy. I ignore the victim voice, and I cherish the moment. Talking about pain or prognosis is unproductive and boring, so I don’t. I’ve accepted that AS is here to stay, like wrinkles on my face, and since doing so, I’m happier. Like Rachel, I know what to carry forward.

I am a prolific gardener blessed with a husband happy to do the heavy lifting. I’m hoping Humira will mean I can go back to pottery, but if it doesn’t work, I’ll go back anyway. I have my family’s future travel all mapped out. The northern lights. Antarctica. Showing my kids the Great Barrier Reef before it disappears. AS has to come to on these journeys, checked neatly and constantly into my luggage, but the way in which I live my life, with hope, positivity and a keen handle on generating happiness, is totally up to me.

___

    You can experience one of Samantha’s happiness workshops at the Goulburn Readers and Writers’ Festival (NSW, Australia) on Saturday 12 November 2016, and you can buy a signed copy of her novel, The Happiness Jar at samanthatidy.com.

Samantha Tidy
Writer at Samantha Tidy
Samantha Tidy is an Australian writer of children’s, young adult and adult fiction. Her most recent adult novel, The Happiness Jar, tells the story of a bereaved mother who finds her daughter’s own happiness jar after her passing. In it, she finds not only her daughter’s joy, but the solution to some family secrets and a new lease on her own life.

The Happiness Jar won the ACT Writing and Publishing Award for Fiction, among several other award nominations. Samantha’s previous young adult novel and children’s books have each been nominated for awards. Her next children’s book, The Day We Built the Bridge, will be published in 2018 by MidnightSun Publishing.

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