Friday 16 January 2015


There is nothing better than a Neurologist who takes you seriously. There is also nothing worse than a Neurologist who takes you seriously. Better and worse, intertwined and inseparable of late. Since becoming ill I keep coming back to the idea from F. Scot. Fitzgerald that the holding of two opposite ideas and functioning, equates to intelligence. If that's the case, illness and intelligence are fond bedfellows and I'm some kind of closet genius. I wonder if he'd mind if I added a caveat, to the whole 'functioning' part of the equation. Maybe we could go with 'mostly' functioning. Or replace it entirely with 'still breathing'. I am pretty skilled at stuffing my mind with opposing ideas and breathing. Pure genius. Watch out, Hawking. I'm coming for you.

It's been six months since my last visit. We drove the three hours into the city. The land slowly transforming from flat paddocks dotted with cows and ancient pines, to smoke stacks and gritty pall, and concrete, more concrete and the tang of exhaust which always leaves me with a sore throat. Inner city Melbourne is lovely in it's eclectic nature. Green-leaved trees line the streets and expensive real-estate is set aside for verdant parks (we're not called The Garden State for nothing). Tram lines run everywhere and tight streets, packed with cars are bordered by a mix of everything from Victorian Terraces, Art Deco apartment blocks, and modern glass and concrete monoliths. Car repairers, sit next to surgeons, pubs, cafes, private residences, sex shops and art galleries. A quick glance upward and the sky is seen through the lens of tree branches and a maze of wires. The hospital is like the city. A mish-mash of architectural styles, punctuated with small green oases for patients and families to steal some reprieve from the ravages of the hospital setting. At the entry you can get your yellow fever inoculation, pick up your prescription, buy a Tatts ticket or plan your next overseas trip. A little something for everyone.

A lucky break means a park out front and a small clunking elevator ride up to the fourth floor. The way-too-familiar waiting room is muffled. Part of me imagines a frazzled librarian-type, lying in wait to step out and wave their disapproving finger and send an irritated “Shhh!” in our direction,should we make a noise or, godforbid, laugh. Excitement at an empty waiting room is quickly quashed as my appointment time comes and goes. The elderly man next to me sits head tilted backward sleeping. His wiry arms relax on his bone-coloured trousers as a small throaty snore starts to escape his open mouth. Across from us a woman and her two daughters sit heads huddled together over a magazine on the mothers lap. The well groomed woman to the right coughs and splutters, apparently unaware of the concept of infection control, or tissues.

My Neurologist is friendly. I've seen her for nearly seven years now. She's happy to see me on my feet and not in my chair, but misses my red heels from the past year. I look less gaunt. She loves my dress. We chat about my blue hair and how I've been as we make our way down the corridor to her room.

Oh you know, okayish.

Which of course is and isn't true. But okay is relative these days. Okay means same old same old. Okay means I haven't done a massive nose-dive since I last saw her. Well at least not in the neurological sense. Okay doesn't mean regular-folk okay. Regular-folk Okay and I don't socialise in the same circles any more. Okayish means I'm still broken and breaking. But nothing exciting. Just the usual boring, meandering, decline. I break in all the meh ways.

I stumble and shake over to the table, lay down and roll off my purple stockings. The tuning fork hums somewhere in the distance, even though I can see it is placed directly on my foot. Is it cold? No? What about here? Bend your knee. Relax. Tap. Over excited knee reflexes shoot out and shudder. My feet sit there, unresponsive and unimpressed with repeated attempts to elicit a reaction. Push up. Push down. Extend. Shake and collapse. Can you feel this? What about this? Here? Here? The factory line assessment continues until she is satisfied that my body is intent on being obstreperous.

The listing begins. All the things that are wrong or more wrong, than last time. I am allocated a new word “Confusing.” I add it to my long list of other diagnoses which includes the perennial favourites “Special” and “Interesting” and my other C word, “Confounding.”

Medications are discussed and dissected. Some are agreed upon others discarded. Something to stop me throwing my coffee everywhere? Or flinging glasses? Hmmm not yet, the side-effects outweigh the benefit. Something for migraines. Yes. We'll go with that. Collaborative and fruitful discussions a rarity in the medical world, are appreciated on the odd occasions they occur.

Two new firsts are added to my referral folder: Neurogeneticist and SPECT scan. My request, so I can't complain. One more attempt to find the elusive diagnosis. A label that I can print on a card or whip out at dinner parties. Two more opposing ideas are held in the palm of my hand.

I don't care if there's no label it wont change my treatment. Let me wave my Zen banner for all to see. I am woman, hear me roar my lack of caring.

Sits snuggled next to,

I really really want a concrete label to wrap my arms around. Please give me a label. Someone. Anyone. please......

She doesn't bat an eyelid at my request. My listing, combined with Mr Grumpy's clarifications are enough. It seems things are looking more of the CNS variety as more weirdness comes knocking. My muscles aren't supposed to be doing the things they are doing. My cognition shouldn't be as bad as it's become.

A new script sits in my bag alongside the referrals and I make my way back out the door. We stop long enough in the city to grab a decent coffee and some sushi and quick visit with our eldest. A long black and something for the pain and nausea and we repeat our trip in reverse.

The drive home we are quiet. The rain is pounding. We hit the patch of the drive where black cows stroll under the giant power lines that link the coal pits of the Latrobe Valley and the city. Shirley Manson bursts out of the speakers:

This is not my idea of a good time.
This is not my idea of a good time.
This is not my idea of a good time.
This is not my idea.

CNS hey? So it really is “all in my head.”

Mr Grumpy doesn't miss a beat.

Just think of all the time and money we could have saved if we had listened to that doctor way back at the beginning!

Sometimes you just have to laugh.



  1. oh yes, the first two lines completely!
    I'm interested in what you are looking for with the SPECT? I had one early on, 8 years ago and have been wondering whether its worth repeating.

  2. Keep fighting sweetie - great post as always! Can I add your site to my blogs to watch list, when I have completed it xx


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