For Marg, who helped me make the hardest decision of my life.
I will never forget your courage.
Love and light,
It’s one forty two in the morning and my thoughts are coated in four hourly Merysndol Forte tablets while a border collie rests on my feet, cutting off whatever circulation I had left. Nine hours ago I bought a $200 crisp white doona cover and I am already trying to remove evidence of milk chocolate which will no doubt send my mother into a premature grave at the thought of it all. Oh, and my shoulder is dislocated, my arm hanging lazily from its socket with a great indifference to the entire debacle.
When my bones were still young and thoughts dizzy Dad began to buy my brothers and I Lego. The excitement in the lounge room was palpable as we carefully constructed our first ever Lego, surely more than our parents could possibly afford, yet they never alluded to the fact. Four children sat cross legged, including one in his forties, and together we made something from nothing. It took pride of place on the dining room table that night, and we each took a moment to admire our part in forming such a masterpiece.
The next afternoon as bellies rumbled and schoolbags were slopped onto the floor, six eyelids shared in a collective look of sheer horror. Our masterpiece had been super glued. Dad didn’t understand. He stood proud, assertive.
This way it always stays the same!
Many birthdays on we share the same story in twenty first and eighteenth speeches. Lego Gate. The day Dad sealed the fate of one design, and prevented any future alterations or experiments. We are yet to forgive him. He still thinks that super glue was an excellent idea.
Genetic disorders are not unlike Lego Gate. My, or should I say our fate was cemented in super glue long before we could comprehend Autosomal Dominance. Our pieces were fixed in place. Every cell. One hundred per cent penetrance. My brothers snicker at the word in a way that only adolescent boys can. And just like all those years ago, we were never given a say as to the undeviating design of our flesh. There was no mandate, no democracy. It was what it was.
C’est la vie.
I would have made a really good nurse you know. I just need to tell you that, and I pray you will allow me the gift of believing it for yourself. God knows I tried. I studied harder, faster, longer and stronger than the sea of drunken, pretty faces. I didn’t go to pub crawls. Instead I crawled to the toilet with a text book in hand and acquainted myself with the Therapeutic Index in-between my own toxicity. I couldn’t tell you how many times I ironed my uniform, or straightened my stethoscope. Two years and six shifts.
On my sixth shift, as I saw her waiting with tears in my eyes, I knew.
I am unsure as to who cried more.
‘This isn’t worth dying for Jess.’
The irony almost made me laugh. For so long I had fought to survive for this. And now it would surely kill me. I thanked her for being the only one to give me the gift of honesty.
I drove home. I apologised to Mum and Dad for failing.
I applied to study psychology within eighteen hours.
I cried so hard that I cracked a rib.
And then I didn’t get out of bed for four months.
That day I lost the last remnants of my identity, and I slowly faded into an abyss of spontaneous wracking sobs, gratuitous indifference and old thoughts of self sabotage creeping into the forefront of my mind.
I had spent since I was sixteen years old telling people that I was going to be a nurse. When my body fitted in spasms and retches I would whisper to myself over and over ‘I will be a nurse’ and get myself out of that retched bed. When they flung the cruellest of words at me across the school corridors and computer screen, the same whispers would echo in my wrists. I will be a nurse. I will be a nurse. When disease robbed me of another moment I would remind myself of my purpose, my reason.
Tomorrow my parents will wake me by nudging a belligerent dog onto my bed, spoon medication into my lips and berate me for the doona incident. I won’t begin my day with pilates. Maybe I will try to get my shoulder back into it’s appropriate hollow. Maybe I won’t bother, as it’s the day of rest after all. I will farewell my younger brother as he moves out, and I will wish him well with all my heart. Later when the world isn’t looking I will shed a tear into Mum’s arms and she will tell me that my day will come when I get to live the way I want.
On Monday I will spend thirty five minutes too many fussing over fabric and be typically late to orientation. I will dance around questions and hand my new friends little white lies complete with bow, for I wouldn’t dare make them uncomfortable; Monday’s are awful enough. Later the truth will undress itself when I slump under the class table, but for now we can play pretend. More importantly the day will be wonderful.
Tuesday I will rest my head against the trains Perspex, white mice nuzzled inside my ears, and dream of far away lands. Sometimes I like to pretend I am in another country, and see the world with new eyes. It’s always lovely. I will waltz into the hospital with dazzling gums and outstretched fingers, and we will film the hours away with coffee between our palms. I will know I made a difference. Then there will be pecks on the cheeks as I rush for the tram, keeping joints intact, and head to the next hospital where they will take notes and I will try to explain my lego blocks to people who have only ever met the likes of me on paper.
The week after and I will begin my new chapter, with new lecturers, new essays and the same old heavy textbooks.
And so on my life will go.
I want to be a paediatric onco-psychologist. With a bit of luck I will be.
But maybe I will be a writer. Or a Saint Bernard breeder. Or work in a post office. Maybe I will marry, and maybe I will have a child. Maybe I will not. But what I do, what I have; it is not me.
My identity is not in my failures nor my successes. It is not in my degrees and it is not in my position. It is not in my beauty, and it is not in my disease. It is not in my abuse, and it is not in my love.
Me is hastily removing chocolate from a $200 quilt cover and marching my pet donkey back to the paddock for eating Mum’s best tomato bush. It is in the keys my fingers miss on the piano, and the way my heart still swells regardless. It is in brushing too many dogs and leaving fur from ‘arse hole to breakfast time’ as my Dad so eloquently proclaims. It is in my anxiety when I see his car, and it is in my excitement as a friend returns from sea. It is in the handwritten letters to strangers and it is in exclaiming over the dog of a stranger.
This life isn’t what my heart expected.
And maybe I am not doing what I want, and maybe I don’t have all that I ever wished for.
But I have an identity.
And maybe there is something wrong with me.
But at least I am free.
C’est la vie.