Michelle Roger was one of six emerging writers who showcased their work at the Write-ability Salon at EWF on Sunday 1 June, 2014.
Following a series of advocacy and life-writing workshops for writers with disability, the Write-ability Salon unearthed the sort of unique and powerful stories that usually go untold. The Write-abilty Salon is supported by the City of Melbourne 2014 Arts Grant Program and is presented in collaboration with Arts Access Victoria and the Emerging Writers' Festival.
“Well Michelle, it seems you have a bad case of FUBAR.”
Okay, so my neurologist didn’t exactly use the word, FUBAR. She may have started our appointment by saying I was “special”. That I was “interesting”. A “medical mystery”. But all I heard was the old military acronym, FUBAR: Fucked Up Beyond All Recognition.
It is straight to the point, and the most accurate description of my body that I have ever come across.
A month previous I had spent a week in hospital for intensive neurological testing. A last ditch attempt to find out why my body was breaking. And now I was sitting in her light airy office being told she still had no clue.
Once the word “special” was uttered I knew what was coming. I saw that look on her face, god I hate that look, as she prepared to give me the speal I knew so well. The world faded. Her words nothing more than an murmur on the edge of awareness.
Occasional words broke through, “neurodegenerative”, “unclear”, “I’m sorry”. I just sat there, looking out over her shoulder. Taking in the view of Melbourne’s roof tops. Concentrating on the detail of the cracked and fading Victorian terrace to the right. Her words drifted past. Words like water on rock. Taking another small layer of my hope. Another small layer of me. No matter how much I tried to deflect or tune them out, they continued their assault unabated. The hope/try/disappointment cycle was in full force once more. Though the disappointment part seems to occupy more and more of the cycle as time goes by.
I had gone in with an open mind. Well at least that’s what I told myself. I wanted answers. I needed answers. I didn’t care what. Uncertainty is worse than knowledge, no matter how bad. Living with a shadow lets your mind run rampant and leaves you awake at 3am sobbing into your pillow. I knew I was in scary territory. The common potential disorders had been ruled out in previous years. The disorders and diseases to be investigated this time, were on the frightening, incurable side of the ledger. I couldn’t even pronounce half of them.
I was given 3 diagnostic options. Option A (write your will now). Option B (don’t stress, you’ve got a good 10 or 20 yrs of painful, untreatable, deterioration to write your will). And finally Option C (we have no idea what you have, you weird-arse freak). And it appears, once more, that I am a big fat C.
Eight years of increasing illness. Eight years of specialists and investigations. And here I am, none the wiser. I have given my pound of flesh. The nerve cut from my ankle, the muscle from my thigh, the fat from my stomach. I have given my body weight in blood a thousand times over. I have been stuck with pins from head to toe. Forced to pass out. And to have my blood pressure collapse. I have had electrodes placed on my body, needles inserted and electric shocks given. I lay still while they stuck a needle in my mouth and twirled it around, the doctors nodding excitedly as my nerves screamed like a distorted dive bomber from the monitor next to me. Another needle stuck in my hand whilst it was hit with a hammer to hear my nerves squeal even louder. Not an orifice remains unexplored.
Scan after scan after scan. I have endured my claustrophobic nightmare of the MRI, or Thumping Tube of Death as I like to call it, more times than I wish to remember. I have peed in more little yellow-capped containers than I can count and been forced to give an even less savoury sample in a thumb-sized container with a tell-tale brown lid. I have related my story to doctor after doctor, after doctor. And still I am faced with, “We don’t know”.
Words are bandied about. Severe autonomic instability. Progressive neurodegenerative autonomic disorder. Severe dysautonomia. Or my cardiologist’s favourite, Michelle’s disease. All my specialists agree that I am broken. They can tell me the ways that I am broken, but at this point the why is still missing. After eight years they can tell me it’s progressive. But you hardly need a medical degree to spot that.
After a multitude of tests and specialists, I still don’t fit anywhere. It’s like high school all over again, but with more needles and less teenage angst. If I have to have something that no one else has, then I get to name it. I get to own it. So… My name is Michelle, and I, have a bad case, of FUBAR.
© Michelle Roger 2014