Saturday 31 January 2015

What if today you chose kindness?

(Frida Kahlo, Self -Portrait with Thorn Necklace and Hummingbird, 1940)

What if you were kind to one person today?

What if that person was you?

What if you said 

I'm enough

What if you allowed yourself to believe 

That perfection is but a lie

And imperfection the masterpiece

That the things don't matter

That the what if's

And the if only's

Are the sleight of hand we use to hide the truth

Lies are told

By the empty sages who howl at the door

The musts

The shoulds

False prophets yell from street corners 

To tell you the wrongs

The failings

The disappointment

The bruises and the hurts

Delivered and delivering.

Empty words 

Bleat incessantly

Beat you down into submission

Ease in agreement

False beauty with talons

Acquiesce and be torn apart

Momentarily placated


The goal posts move


Conflicting commands

Come from new corners.

Close your ears to sirens

Bind them

And fill them with daisies

Hold the silence

Listen for the first whisper of truth

Let it grow

The rhythm of the heart writes on the stone

Slow and steady

While the world around ebbs and flows

While beasts scream and claw

And clamber to cover and obscure

It continues below. 

Waiting to be recognised

Waiting to be found


Vibration and resonance


That it belongs

The song plays

While the mosquitos buzz

Hear the breeze 

Gentle caresses on leaves above

Eucalyptus to cleanse

Hints of rosemary 

For remembrance and clarity

Scent and sound.

Wipe the oils on your brow

And wrap the leaves round your heart. 

Focus on the melody

Let the words rise





What if today you chose kindness?


Tuesday 20 January 2015

#Hospitaglam: Giving illness a very fabulous middle finger.

(Yep blue hair, fabulous frock, bright red compression stockings and sparkly red heels for a pacemaker and cardiology check, I may be a fan of  #Hospitalglam)

I've been stewing over the reaction to #hospitalglam for about a week now. Comments have ranged from supportive to outright rude. And it is the later that have really gotten to me. Both the unwell and the well have slammed the concept. And whilst I must say I am not surprised by the comments of the healthy, I am disappointed by many of the comments from fellow patients condemning her for making their lives harder, or doubting the veracity of her health issues.

For the uninitiated #hospitalglam is the creation of Karolyn Gehrig and can be found on Tumblr, Instagram and Twitter. Gehrig was diagnosed with a form of Ehlers Danlos Syndrome (EDS) and like many of us with chronic illness, is a frequent flyer in the medical system. She wears funky clothes (I have serious dress envy over her pill dress) and poses for the camera in an array of hospital and clinic settings. Many have followed her example, posting various selfies of their own glammed up medical experiences, adding them to the hashtag. The concept came to light recently in mainstream media and the discussions around it have been interesting, and at times infuriating, to follow (why I read comment sections I'll never know. It's a bit like picking a scab until it bleeds. Or watching QandA.) The issues surrounding the accuracy of the information relating to EDS is an issue for another post, but I will say, journalists pick up your game. It's not that hard to find accurate information about this collection of disorders.

When you become a patient autonomy takes a hit. The very nature of disease and injury mean you are reliant on another, a doctor, to direct certain aspects of your life. You are reliant on the expert knowledge of treating teams to direct aspects of treatment and allow access to certain medications. Part of being on top of your disorders necessitates regular reviews and things like blood tests. You must, to a certain extent, suck it up, (as my your control freak nature screams in protest.)

You must accede control to a medical system which trundles on oblivious to your personal needs and desires. The hospital PA doesn't care that you want treatment yesterday rather than waiting for six months. Hospitals feel more production line, than houses of healing as time poor staff are forced to minister to an ever growing multitude. You must tell your story a bazillion times to every medical or allied health professional. You must play the game to a large extent, to have access to care.

The clinical nature of medicine both in the hospital or regular clinic is frequently cold and impersonal. You have to wear backless gowns and bear your body to strangers. You have to lie there while you are pushed and pulled, spoken about rather than too. As much as you pride yourself on being able to self-advocate, and some like myself are lucky to have a husband who is a strong advocate for my care, there are times where you are blocked. A doctor can turn around and say no to a treatment and given the rarity of my presentation, I know I am limited to where else I can go. Choice is a lovely word, but when it is spoken about in the context of health, it negates the realities of issues like geography, finances, availability, and rare illness.

Control is an illusion and when you are thrust into the medical system, particularly as a chronic or long term patient you are slapped in the face with this reality. It's easy to despair. It's easy to feel beaten down and hopeless. It's easy to lose yourself to illness and the world that surrounds it. How we find our way out is complex. The paths we take and modes we employ differ greatly. And we arrive at that place at different times. But if we are to not simply exist but thrive, we must find a way to reclaim control, and our sense of self, however that may look.

#Hospitalglam is one method of taking back control. And one I relate to strongly (Anyone who followed my Clicking My Heels for Dysautonomia fundraising last year, or follow on FB, will understand why I am a fan of the #hospitalglam concept.) But it is not the only one. Gehrig is not telling people what they should do. She is not telling people they must take her path. She is sharing what works for her and the large following she has garnered suggests that there are many people who can relate to her, and her mode of rebellion/control.

I have seen headlines talking about #Hospitalglam, taking the “ugly” out of illness, or removing the “shame.” Neither word deserve a place in the illness narrative, and their use misses the point of the hashtag. There is no shame in illness. It is simply something that occurs as part of life. It doesn't matter how good a person you are or how well you eat or exercise, illness can still come calling. No one wants illness, we don't actively seek it. Nor do we do things to prolong it. “Shame” is closely linked with blame, and if you have been ill for any length of time there will be someone who tells you how you are to blame for you continuing malady, be it your diet, lack of appropriate religiosity, lack of kitten cuddling or refusal to see their favourite swami or eat 85kgs of [insert super food of choice] each day.

We are continuously fed a lie both in the community and through the media that illness is shameful and ugly. Just to clarify NO ITS NOT. “Shame” and “Ugly” are judgement statements. Why should we be judged or internalise such a view, for something that is out of our control? So not only do I have to deal with a debilitating illness but now I must also feel ugly and ashamed in the process? I say F**k that!. Yes there is pain. Yes there is vomiting. Yes we fall over. Yes we require medical aides. We are cut and sampled. Swathed in bandages and stitches. We may need feeding tubes or colostomy bags. Gain excessive amounts of weight due to hormones or treatments, or end up little more than bones in a skin bag due to malabsorption and paralysed stomachs. Our mobility, speech, thinking etc may be impaired. We may be depressed, anxious, dealing with bipolar disorder or schizophrenia. But none of that is shameful or ugly. They are merely the cards we are dealt. To equate illness in any context with shame or ugliness is insulting. And perpetuates damaging stigmas. Again, I say to the media, pick up your game.

In #hospitalglam many see an alternative to the paralysing and disempowering pity narratives of illness. They see an “up yours” to illness and a system both medical and societal that says to be ill you must conform to a certain paradigm. You are either pity worthy or inspirational. But in neither case can you win. There will always be someone to tell you, you are doing it wrong. The classic “you don't look sick” in all it's forms is thrown at those who wish to frock up or pop on some lippy (if only putting on my heels cured my broken genetics). Alternatively, if you stay in your pjs and trackie dacks you are becoming your illness and need to pull yourself up by your bootstraps. Damned if you do and damned if you don't. And these are the themes peppering the comment sections of articles about the hashtag.

Gehrig is not telling anyone what they should or shouldn't do. She is expressing herself in a way that works for her. The media interpretation of #hospitalglam has missed so much of it's intrinsic value. Her behaviour is not unique (though it can't be framed as an inspiration narrative by the media unless it is seen as an abnormality), many frock up in hospital and at medical appointments, but hers has been a more public and organised expression. Given her background in performance art it is not surprising that this is what works for her. But the way she and others have chosen to express their experience is so anathema to the wider societal views on illness that it has been held up as more of the inspiration porn of which the media is so fond. Just like those dealing with disability, the expectations of those with chronic illness are so low, any achievement is seen as miraculous. We are taught that such life events are the end of the world, so many are unable to conceive of a life filled with joy or fabulous frocks and illness. It is this framework which is so angering to many patients who feel like #hospitalglam represents yet another burden to add to their experience, rather than a moment of choice with a bit of tongue-in-cheek sparkle. Thanks media.

Patients are people first. And people are inherently diverse. The way we react to illness varies greatly, but that doesn't mean we can't appreciate or support the way others choose to seize the day. Even if we don't understand or like their particular choice. While #hospitalglam celebrates fashion for it's power to give illness and the medical system the finger, others use art or music. Some form book groups or join support organisations. Some garden. Some engage in cosplay. Some are Trekkies and yet others, shudder, Beliebers. The idea that illness is some sort of end of the world scenario is far from the truth for many. When you are living with an illness or disorder that may never go away you find ways to deal with it, and that will look differently for different people.

Whether other's do or don't like #hospitalglam is beside the point. This is her experience and her expressive outlet. She is entitled to do whatever works for her. Just as every patient is entitled to do what works for them. As someone who wore sky high red sparkly heels to their MRI and bright red compression stockings during their pacemaker implantation, I celebrate her chutzpah and raise my bright red lippy in salute.


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.


Monday 12 January 2015

Rediscovering the Lost Art of Breathing.

The bliss of an empty beach cannot be underestimated. 

I should be writing. I brought all my book notes. The reams of printed paper covered in a multitude of black pen edits. Added words. Heavily crossed out words. The "what were you thinking, Michelle?" edits. Instead I am simply sitting at a rusty, glass topped table on the back porch of a cream weatherboard. I trace the rough edges of the metal work with my fingers and listen to the waves crash on the shore 100 metres to my right.

I can hear birds everywhere. In the scrubby beach dunes, darting in and out to the overgrown pig face and the gnarled banksias. Each day a little group of blue-helmeted finches dart around the brush outside the kitchen window. Little fluffy brown babies, just getting their wings, follow springing from twig to twig. Gulls floating effortlessly on the sea breeze, turns and a myriad other sea birds casually flying over the odd fisherman or float in small groups on the gentle waves near the foreshore.

I'm burnt. On my legs. An odd pattern marked out by dog slobber and the sticky sand that gathered in haphazard patches on my legs. It hurts. A lot. The breeze is kind but still tingles as it passes. Sheets and hands make me yell. It goes against all the Slip Slop Slap messages of my youth and manifests in the odd twinge of guilt. But it is a good feeling. My legs haven't seen the sun in years. They are always covered in compression stockings when I head out. Never to see the light of day. Or they are hidden away in the house with me. Too ill to head outside. But I forgot. I forgot all of that. I sat on the beach and whipped off my violet Size I 20-30mmHgs and stood in the waves propped expertly by Mr Grumpy. I stood there and felt the cool waves hit. One after the other higher and higher. I felt the sand slip from under my feet and rejoiced in the feeling of moving lower and lower, consumed by the fluid grains. When I reached my limit I lay on my beach mat and examined the infinite blue of the Summer sky. I felt the warmth of Freyja's body as she cuddled up close. And the feel of her paw on my leg and her tongue licking the salt off my leg. I breathed it all in. And it was good.

I've walked on the beach. Not far and not for long. But I walked. Slowly. Gingerly. Slipping and sliding. My walking stick disappearing into the loose sand. My youngest a few steps ahead resolutely pushing my wheelchair just in case. I follow the deep ruts left in the sand like breadcrumbs to the biscuit coloured sands we make our own. The soft deep sand up near the dunes and the stable darker form down closer to the waves. I have walked the midline between surf and dune, where the shells and detritus from the sea gather. I stopped and collected. A haul of sea shells whole and broken now lay on the table next to me. Pippies and oyster shells, clams of various sizes and the odd conch. Most I have no name for, but their size, the curve of the edge, breaks smoothed by the endless churning of sea and sand, catch my eye and draw my hand. My legs ache and I've tumbled but it has been blissful.

I have eaten foods I should not. I have downed expensive Ondan to stop being ill and put up with pain. I have eaten ham and turkey and a little spread of mustard pickles. I luxuriated in spinach and pepitas. Walnuts and raspberries. I sat with my family and ate Christmas dinner. And fish and chips and drank wine. I felt sick to my stomach and deliriously happy.

I have laughed with my family. Told bad jokes and endured way too many puns. We have hugged and we have sat. We played board games and paddled in the sea, and walked arm in arm up the dunes. We played cricket on the beach Christmas day. An Australian tradition that I have been unable to participate in for years. I batted. I bowled. I fell over and I laughed. We are staying in a house lent to us by a friend. And Mr Grumpy has gone above and beyond to make it restful and fun. I have been spoiled and I am truly content.

I've stayed up late and not rested. Walked on the beach without compression stockings and failed to hydrate properly. My knees and ankles are swollen from my efforts but I walk up the path from the beach again and again. My family simply smiling and shaking their heads, knowing it's pointless to insist that I pace myself. I have done everything I am not supposed to do and it's been magical. My hair is at angles from sea wind and salt. There is sand crusted in my stockings and on the rims of my wheelchair. I can taste the sea salt on my lips and I've lost hours simply gazing at pristine blue Summer skies. I have lived. I am exhausted and I will pay. But every drop of pain and illness. Weakness and vomit is worth it.

I sit on the cool concrete step out front now. The sun is going down and Angus and Julia Stone sing from my laptop. I can hear waves and laughter. Birds and the gentle sound of the wind through the yukkas in the yard. I can smell salt in the air and see it's mark on the house we have been inhabiting. I feel healed and cleansed. Renewed and reborn. For the first time in a long time I am breathing.