International Day of People with Disability 2015: Write-ability Salon, Writers Victoria.

The awesome crew of writers. Top left Sarah Widdup, Paul Dalla Rosa and Write-ability mentor extraordinaire Fiona Tuomy. Bottom left Claire, me, Jax Jacki Brown. (Ashlee Bye not pictured). 

On Wednesday night a group of fabulous disabled writers took over the Writers Victoria Salon. The theme, "Nothing about us, without us." We raised our voices and shared our stories. I was proud to be amongst such a great crowd. The Write-ability Program, supports disabled writers at all levels to develop their writing and it is a group I've been very grateful to be a part of for a few years now.

Disabled writers have diverse stories to tell. And no one is more qualified to tell these stories than we are. We can raise our voices and tell the truth of our experience.

Hear Us.

This is a video of my reading for the Write-ability Salon, to celebrate International Day of People with Disability 2015. A transcript can be found below. 

  

My neighbour's growling four-wheel drive reverses past our headboard. Thin walls and a driveway less than a metre from our bedroom negating any need for an alarm clock. Pavlovian instinct kicks in triggering my first curse of the morning. An unsteady hand extends from the covers. Sausage fingers stabbing at the screen turning off flight mode. If I squint and close one eye I can mostly deal with the little flashing light. The phone vibrates and messages by the dozen begin to arrive. It's too early. Pre-caffeinated me can't process that level of interaction. I swipe aimlessly through time lines. Past cat videos, music videos, heavier news stories. And then a meme catches my eye.

Without your health, you have nothing.

My sleep addled brain can't quite process the message. I shake my head and scroll back to the picture. A woman stands triumphant, well-toned arms raised above her blonde head in a sun-kissed wilderness, white Georgia font in bold. I read it again.

Without your health, you have nothing.

It leaps from the screen and stops me still.

Without your health, you have nothing.

I look at it again and feel my body tense. My broken and breaking, health-free body. Even in my mouth-breathing, drooling state I can conjure up some choice expletives.


I look at the increasing number of likes and shares. The “Ra Ra motivational” speal written above the picture grates.

Without your health you have nothing.

Taken as truth and perpetuated in shares. The message spreads like an infection through the ether as followers find motivation and inspiration in the simplistic words. The underlying judgement begins to fester amongst the followers as comments multiply about those who are somehow the cause of their malady or disability, and how they couldn't bear a life like that.

I read it again. And feel my anger rise.

If accepted as truth, I have always had nothing. My “constituation of a wet tissue” as my father was want to say, belying even the pretence of health in any portion of my life.


And now?


Now I am living with illness and disability 24/7. Year after year. With full knowledge that it will never resolve. Health is not to be mine, not now. Not before. And not in the future.


Is my life to this point a collection of nothingness?


As I continue to be ill and my disability increase, is nothingness all I have to look forward to?

Without your health you have nothing.

The meme on the screen before me states as fact that which is a lie.

A lie perpetuated in a society that seeks perfection at every level. Whatever that is? Perfection. An arbitrary guideline created by those who would other. Those who have products and ideologies to sell.


Such sentiments reek of health privilege. They reek of false lessons, false security and small ideas. "I have my health," is the new statement of prestige and success. Up there with a new BMW, or a mansion in Toorak.


The ill and disabled become inspirational for simply breathing, because others cannot understand how we continue on in a such a state of constant nothingness.


Advertising campaigns contrast the bright lights of health with the grey world of illness. They see joy vs despair. Friend vs Enemy. The Good vs Bad. A moral argument that is transposed upon those whom illness calls. And so we are told, "without your health, you have nothing."

Avoidance of illness at all costs. If you become ill and disabled you have not tired hard enough to avoid the nothingness. You must be judged. You should judge yourself. Bludger. Lazy. Worthless.


My broken body is held up as both warning and object of scorn. I am the reminder they work hard to forget.


But no amount of simplistic memes and soft lit backgrounds can erase the truth.


Illness doesn't care. It doesn't care if you run 10km everyday. It doesn't care if you only eat organic. Or have never smoked or consumed alcohol. It doesn't care if you help old ladies across the street or kick kittens for fun. Good, bad or indifferent. Illness happens. Disability happens. Life happens. Genes can kick in, or accidents can occur.


Yet we have so demonised the idea of illness and disability that we fear and judge those who live with them. We see the end of the world. The “I could never live like that”. And in turn the “if only you'd done this, that, or the other.”


Is it then truly surprising that people fall apart when illness and disability come their way? No wonder they struggle. We are so ill prepared for the concept of a fallible body, that we are suddenly thrust into a world of nothingness. Of no hope. Of fear. Of helplessness and hopelessness. We have no skills, no training. Illness is so alien, so other, that we cannot conceive a way through it or a way to live with it. We have failed ourselves in our self-indulgent belief that we have control over the fickleness of life. In turn we have created our own failure. Where in truth none exist. Sometimes shit happens. But, more importantly, we continue on, often fantastically on, when it does.


1 in 5 people live with disability. I in 2 live with a chronic illness. Are we to believe that all these people are living lives of nothingness? That lives of worth, are the province of the able-bodied alone?


Such a belief does a disservice to us all.


This notion of morality and value is something we have created and in turn something we can change. If we have the courage to move beyond purile slogans and embrace the infinite beautiful variety that is life.


I don't live in nothingness.


And I don't live despite my illness. I simply live. No caveats needed. I live a life of possibilities and joy. A vibrant, fulfilling and worthy life.


I don't have my health. I have never, and will never, have my health.


And despite what a lie-filled, and promptly deleted, meme would suggest,


I have always had my everything.



A couple of the other pieces from the night are avaliable online. Check them out.

Claire Barnier's piece can be found here
Sarah Widdup's piece can be found here

Movember 2015: John's story.

Today my Father-in-law, John, has kindly shared a little of his story with prostate cancer for Movember. I hope his openness will encourage more men to talk about this and the other issues Movember covers, and get the checks they need. Thanks John.

John is also raising funds for Movember. 

You can donate here.

The Movember Foundation focuses on raising funds for programs focusing on prostate cancer, testicular cancer, mental health and physical activity.  

*****

It is now 6 years since being diagnosed with prostate cancer.


Back in 1995 I was given a full check over by my then GP including ECG, listening and peering into every orifice he could find, checking reflexes and all body functions and reactions, then blood tests for everything else he could think of. Apparently this included a *Prostate Specific Antigen (PSA) test, which at that time I had no idea what it meant - a reading of 1.2 and of absolutely no concern.

Since then my GP sold his practice and I inherited my current GP. Apart from a bad mix of cholesterol, sun damaged skin and the odd pulled muscle I have not required her services.

My new GP never advised, discussed or recommended anything to do with prostate. It was only on my instigation that she included a PSA test in with my 18 monthly cholesterol check, commenting that it might only open a Pandoras box and decisions would have to be made. The results came back, PSA - 12.8. It was out with the rubber gloves and a better check this further. A referral to a urologist or a radiographer was required, and it was up to me who to see. 

I chose the urologist - more rubber gloves and he recommended a biopsy. 

'A' biopsy was actually 24 samples.

So after 64 years of not having to be in hospital the procedure was undertaken with the result being 14 samples proving positive with a **Gleason Score if 7. Based on that he advised surgery to remove the cancerous prostate as first line approach. Dumbfounded at receiving that information I agreed knowing there would be some after effects and possibly some ongoing problems or even permanent ones. 

It was now March 2010.

Waking up in the hospital ward to the news all went well, margins were clear and they were able to save one bank of nerves. Apart from various tubes coming out and going in to parts of my body they had never been before, all was OK. I recuperated well enough and then having to wait some weeks and then a few months for more PSA checks.

The PSA had not reached optimum minimal levels ("oops must have missed a bit") and I was referred to a radiation oncologist.

Seven weeks of external beam radiation in Brisbane five days a week, then wait six weeks to check PSA again. Still not down to optimal minimal level.

After another two, three monthly checks and it had stabilised to a 'satisfactory' consistent very low reading.

All good at that for a couple of years then about 18 months ago PSA started increasing so it's a monitor to see what happens.

Having increased to six times the previous 'satisfactory' very low level my oncologist tells me we have to wait it reaches a level detectable by the latest scans available before further treatment can be determined. 

Fortunately unless PSA checks were done to let me know there are cancerous cells somewhere there are no other symptoms to let me know there was anything wrong.  None of the possible real problems eventuated post surgery and no after effects of radiation so life is good considering where I might be not having had the surgery. 

Thanks to associations like Movember collecting donations towards research, new treatments and detection techniques are continuing to be developed, so by the time I have to start worrying (which my oncologist says will be a few years yet) there may already be better treatment/control or even be close to a cure for my condition.

John.

John is raising funds for Movember. 

You can donate here.

Huge thanks to John for sharing his story. His is one of the many reasons that organisations and events like Movember are so important.

For more information on prostate cancer check out: 

 

Movember
The Prostate Cancer Foundation of Australia.

Cancer Council of Australia

*Prostate Specific Antigen (PSA) Test: The result shows whether there is an increase in this specific protein. Depending on the result, you might need further investigation by a specialist. A high PSA test result does not necessarily mean cancer. Prostate diseases other than cancer can also cause a higher than normal PSA level. (Source: The Prostate Cancer Foundation of Australia)
**Gleason Score: A way of grading cancer cells. Low-grade cancers ( Gleason score 2, 3, 4) are slower growing than high-grade (Gleason scores 8, 9, 10) cancers. The pathologist identifi es the two most common tissue patterns and grades them from 1 (least aggressive) to 5 (most aggressive). The Gleason score is given as two numbers added together to give a score out of 10 (for example, 3 + 4 = 7). The fi rst number is the most common pattern seen under the microscope and the second number is the next most common. (Source: Cancer Council of Australia)

This one's for you.

(My desk. A little bit shabby, a little bit florally, and a little bit FUBARy.)

I'm writing this for you. Yes you. Don’t look so surprised. This one is for you. To read and take from it what helps. To take from it what gives you strength. To take from it what ever you will that makes this day easier. Or the next, or the many nexts to come.

You’re here. Right here. Right now. Reading. In the midst of the storm. In the midst of the pain, or the worry. In the pause. The as well as possible day. The day which fluctuates from good to bad and back again. You are here and you are doing this. You are reading the words that are meant for you.

You made it through today. And yesterday and all the days before. Even when you thought you couldn't, you did. You did it after the tears. You did it after the pain. The despair. The fear. The lost ways and foreign paths. You did it.

You thought you couldn't and yet here you are.

Reading.

Breathing.

Sitting.

Lying.

Here.

You think you’re not strong enough and yet you've faced each day. You watched the minutes tick over. They stretched out, slowed by pain, by nausea and exhaustion. Slowing further as you sat and waited listening for the next tick, the next number to flip over. A tangible something to tell you that time is moving. That the quicksand is a trick of the body and the mind. Until you could finally say, “This day is done”. And life begins anew. There's a chance. A possibility. A hope.

You are up and you are going when the days and the weeks and the months and the years have tried to beat you down. You are tough. Tougher than you could ever have imagined before the change.

Bodies break. Genes turn on. Circumstances collide. And life becomes hard.

You've climbed mountains and forged wild rivers created by bodies and systems and life. You've made it through all of them.

When the voice said “No”. “No more.” “It’s not fair.” “I can’t do this.” You found the path. It was different each time. Shifted left and right. Twisted and split. Sometimes you didn't even know you’d found it until after the fact. You were there, and then you were here. The path was traversed while you were busy contending with the storm.

And here you are. Today. Right here. Right now.

These words are for you. To remind you of your abilities. Of your strength. Of you. To remind you of all you've achieved, in all the days up until right now when you read these words. To know that the best predictor of future behaviour is past behaviour. Your behaviour. That got you to here. You. No one else. You made it. And you’ll make it again. And all the agains.

These words are for you.

Michelle

'Cause I only have one second, this minute today

I can't press rewind and turn it back and call it now

And so this moment, I just have to sing out loud

And say I love I like and breathe in now

And say I love I live and breathe in now 

Same Shit Different Day: Snippets of a Chronic Life

Today I collected my pee in an ice cream container and threw up in the shower. I repeatedly scribbled on an A4 piece of paper which asks me to record the intricacies of my bladder: time, volume, and delightfully, leakage. Yesterday I was buried half under a doona, watching the inside of my eyelids as much as the sharp light emanating from the screen on top of the tall boy. Recovery mode from Friday’s sojourn to ED. A deep black bruise resides where the cannula was inserted. And square red welts and split skin remain to remind me of the 12 lead ECG used to ascertain that my heart was indeed controlled by a dual-chamber pacemaker. I sit here typing, knowing, there’s not a part of this paragraph that I could not have written at a hundred different time points over the last 9 years.

Same Shit. Different day. Maybe I should get that tattooed on my forehead. So every time I'm asked how I am I can simply point to my forehead and get on with my day.

Sure some shit has changed. I am no longer set at a steady 38C every day. Now I vary down to 35 and up to 38 depending on the fickleness of my body, or if I have just consumed a hot coffee, or a cold glass of water. Variety is the spice of life after all. And lying on the couch on a 40C day in four layers of clothes and under a blanket because you can’t stop shivering is always a conversation starter.

But all in all I am still the same. Sick. My most pressing symptom may vary, but I continue to be unwell, have little clarity on the why, and spend a large portion of my life in the medical system.

The shit is still the same, only now it’s 2015 and not 2006.

I was going to write a post about my latest ED visit but there are others in my back catalogue (here, here) that cover things. There was a distinct lack of prisoners, prison guards and police officers this time, which is a little disappointing. Nothing like hearing about assaults and stabbings ad infinitum as the patient behind the next curtain is asked the same questions repeatedly. Matter of fact discussions about makeshift weaponry and a clear desire not to be a rat are elucidative. A whole other world laid bare through a thin blue curtain. But this time my voyeuristic nature is not to be sated.

There was the usual song of the ED. Copious vomiting a few curtains down. The doctor trying to organise radiology after 5pm on a Friday in a rural hospital. HA! Good luck with that. And more vomiting. But little new to write about. It was a Friday eve and all was quiet in the ED, nary a drunken or ice-addled mouse could be heard. There’s a first time for everything I guess.

We went through the motions. Me through my monologue, while Mr Grumpy played the part of the Chorus. Showed the letter from my cardio. Waited patiently through perplexed looks. But eventually the fluids flowed and foul potassium drinks were consumed. Exhausted, chest pain back down to bearable and home once more. Nothing to write home about. Nothing overly exciting or worrying. Ops Normal.

Two parties missed. Much wilting. Much of the usual. “There’s no Vertical Michelle today, is there?” asked rhetorically as I lie splayed on the bed. Burning up. The virus that isn’t a virus and a body that decides to act like it’s fighting all the same. I lie, in much the same position as when we got home from the GP’s five hours before. I’ll continue to lie there hours after the party we are supposed to be attending is long done.

No great worries. It’s the same shit. White noise.

I lay in bed yesterday watching old episodes of Supernatural. Mouth-breathing. Sleeping. Asking Mr Grumpy to listen out when I worked up to a shower. Listen out for the tell tale thump. Just in case.

Today I sit typing, still in recovery mode. Like last time and the time before.

I checked out my vomit to see how many pills were lost and squished it all down the drain with my big toe. Poured myself out of the shower and onto the floor. The tiles cool against my skin as I lay for a while, half on the bath mat and half on tan ceramics. Looking up at our cracking ceiling and dusty heat lamps. Air dried more than towel dried equals energy conserved for other tasks. Like dressing and taking a couple of extra meds to replace the half digested ones. Drag myself together and get on with the day.

There’s nothing special about today, it just is. Another in a long list. A long list of more to come. It just is. This is my day. Today, and yesterday and tomorrow.

Life threads through it.

I talk to my son about eating Dagwood Dogs at the local agricultural show. His realisation that they are indeed foul, but their consumption a right of passage for every Australian teenager. Plates of Vegemite toast arrive alongside water and coffee. Macarons sit on my bedside table, procured by a husband who goes out of his way to try and make it easier. The scent of fresh mown grass floats through the window. My youngest heads to his job at the local Fish and Chip shop, saving for his trip to Vietnam. Rain pours and thunder crashes as the weather turns. Freyja runs in to lie safe on the rag rug next to the bed. Periodically her head appears next to mine. A snuffle to check I'm there and still breathing, before curling up again. The smell of wet dog makes my nose wrinkle, but is comforting all the same. The days merge. And the minutia of life weave through illness and pain holding it all together.

In a scene from Frida:

Diego Rivera: I'm here to see how you are. How are you?
Frida Kahlo: Tired of answering that question. Otherwise, like shit.

Still love that line.

Same shit. Different Day.

I sit in bed again and type, the head piece I made for the missed Halloween parties on the weekend woven through my hair. My family give one quizzical look before continuing on with whatever they were doing. Freyja comes to investigate. Her head wiggles under my arm lifting it repeatedly until I stop what I'm doing and give into her demands for a pat. Courtney Barnett's stream of consiousness rolls out from my laptop. "I'm not that good at breathing in" persists in my head long after Depreston and Pedestrian At Best.

Same weirdness. Different day.

Life is shit, weird, cannulas, Dagwood Dogs, and floral headpieces.

It’s time to collect my pee again.

Michelle

You know your life has hit a high point when you are sitting in a public toilet waiting to be let out. aka The Claytons Accessible Toilet.

(Sign to the Phantom Accessible Toilet.)

The knock I’d been dreading came suddenly through the door. A hesitant male voice, muffled by the thick door,

“Are you ready?”

“Not yet. Sorry.”

The muffled voice announced that he would be back in a few minutes, and I yelled my thanks. My unenthusiastic tone matching that of the disembodied voice coming from the otherside.

I sat on the toilet with my head in my hands knowing that the voice would be back and this time I would need to be ready. I didn't expect the complete stranger to come back a second time. I’d already apologised once. Because you always want to apologise to a stranger for your bowel and vomiting habits.

Why today? Today was the day that my body required a toilet. Now! Repeatedly. Which doesn't matter so much when I'm home. Or when I have someone with me. But alone. With weak limbs. Limbs more weak than normal, as any other symptom escalation leads to increased weakness. But today I was alone. My companion in another part of the hospital attending their own needs.

The other part of the hospital.

As there are no accessible toilets in the busy section of the hospital where he is being attended. Although there is a sign pointing to an accessible toilet. The phantom toilet that doesn't exist despite the bright blue sign and the arrow. The one I sent him off to search for, but instead it led to two sets of able bodied toilets, but no accessible version.

Instead I must navigate the convoluted hallways to one of two accessible toilets in another part of the hospital. Toilets that I had initially been escorted too by a staff member as the route was too hard to explain.

And now I sit here alone waiting to be let out.

Blanche DuBois' classic line from A Streetcar Named Desire, comes to mind. “I have always depended on the kindness of strangers.” This time because someone keeps designing so-called accessible toilets with doors too heavy for weak arms. Doors that wont even click to stay open so I can roll in without being hit and getting jammed, should I actually be able to open them. The Claytons version of an accessible toilet.

Weakened arms and slowed movements after having to self propel to the distant toilets, and then I couldn't even open the door. A strange man saw me struggle, came out of his office to help. The damsel in distress. Because I love that feeling. The feeling of dependence. Ugh. It’s bad enough when it’s a regular door, but a toilet just adds to the loathing. The embarrassment. The frustration. I have no desire to be Blanche for even the most basic of life's events.

And so I sat in the toilet waiting to be let out. Twiddling my thumbs. Looking up at the roof. Waiting. Because the accessible toilet failed at accessibility on the door step. Because being stuck in a toilet is my life long dream.

I unlocked the door and waited.

And waited.

Until a woman pushed the door open onto me and my chair. Surprise!

She shrieked and jumped back. The man from the office came running. And I turned a bright shade of red. Too many cooks spoil the broth and too many helpers make getting out of the accessible toilet a farce of awkward arms propping doors and helping to direct what I can direct myself. Nothing like having to duck a strange armpit, or two as both arms are extended over your head, bums stuck out awkwardly and tip toes engaged. And everyone is embarrassed and awkward. And overly accommodating and solicitous.

I rolled off as quickly as I could. A snails pace with weakened limbs and hands that refused to grip the wheel rims properly. Refusing offers to push me to whereever I need to go in the hospital.

A hospital.

Where people are sick. And injured. In wheelchairs and on crutches. Where weakness is high. Where access may be needed, now! Not when you can find someone to let you in.

Accessibility is so much more than a big toilet and a couple of rails.

It is not accessible if I must ask for help to open a door. If I must rely on another. If I must sit inside, stuck, not even a button to push for assistance.

I am grateful to the man from the office and even the shrieking woman. Neither had to help me. But if they had not it would have been grossly problematic given I had rampant nausea and had manage to forget both my puke bag and antiemetics.

Accessible means I can pee, or poo, or puke alone. Accessible means I am on even par with those who do not have medical issues and disability and who can pee, poo, or puke with wild, independent, abandon.

So often I go places where the doors are so heavy I cannot access them alone. Or if automated close so quickly that I end up with bruises or stuck in the doorway.

I went to a conference earlier this year. When I questioned the organisers about accessibility they said the venue had assured them there was an accessible toilet.

And there was.

Four floors down. Through two sets of doors I could not open and down dodgy hallways and through storage rooms. Accompanied by a security guard. Who had to be paged. While I waited at a front desk. A security guard who in the end had to push me back through the maze as my arms gave out.*

Totally accessible.

I went to a medical clinic earlier this year and could not access their accessible toilet thanks to the placement of two small doorways at right angels and an automatic door which kept closing on me, all of which prevented me from being able to move my chair to get in or once inside out again. My swearing and banging alerted my husband to my predicament and he had to physically lift my chair to be able to navigate the small awkward space. If alone I would not have been able to pee.

Or the major Melbourne hospital that had a locked accessible toilet with a sign saying to go to security for the key. Only when my son went to collect the key, no one was there. He then went to the information desk who couldn't tell him where an alternative accessible toilet would be located and we were directed to try another floor. Nothing like a quest to find a toilet when your bladder is about to go all B-grade disaster movie as the dam breaks.

The examples go on and on. And don't get me started on their use as storerooms.

Being able to access a toilet is a basic need. And yet even when there are dedicated toilets something like the weight of a door, surrounding architecture and distance, can make it inaccessible from the get go.

No one should have to rely on the kindness of a stranger to pee. Or have the indignity of being stuck inside unable to get out until that stranger or another comes back.

It's not that hard.

Michelle

*All credit to the organisers who followed up my complaint and were angry on my behalf.

Sing it Beyonce! I want to be an Independent peeing Woman!

Hiding in Plain Sight.

I'm circling life. It’s a defense mechanism. A preservation technique. I’m pretending I am regular. Just like all the others in the cafe today. Fake it till you make it. Watch and learn. Impostor in the midst.

I am at a table, alone. Writing words and sipping coffee. I look like all the rest. You can’t pick it. You can’t pick I'm wrong. Broken. I am just a woman scribbling words on a page, sipping bitter coffee from a small red cup.

A strong long black.
Four word.
Four words I say when I sit in any cafe.
Four words I usually cock up despite their familiarity.

There’s no one here but me. I can’t hand my order to another to deliver. So I pause and stumble, over articulate. The words in my head get lost on their way to my mouth. Distracted by bright shiny objects until they meander on their way to my lips. At every step there is a pot hole or tiger lying in wait. A chance to be stolen or corrupted before their simple message is delivered. The waitress didn't spot the effort that made my order possible. She simply waited, half distracted. Her gaze alternating between her notepad and the tables just outside the large concertina windows. An automatic “Great!” leaving her lips as she writes down my order, already halfway back to the counter.

It’s hot in here. Spring days are warming. The air is stuffy. Fans move sluggishly high overhead, weighed down by thick air and errant cobwebs.

The veins on my hands dilate and swell. A three dimensional knotted road map radiates out from the back. Blue tendrils reach down over my fingers and rope up over my writs. I sip tepid water from the stout glass, a half-hearted attempt to rehydrate. And move my hands one way and the other, forcing blood through sluggish vessels. I play with the skin. Pinch the dermis and watch as it remains standing in peaks all over. Intellectual me knows it is beyond any hope of oral hydration. Ostrich me shakes it out and rubs it down, and continues to sip.

My ankle pulses. The swelling is beginning. The damage from the lost nerve and resultant neuroma demand recognition. Alerting me to the stupidity of deciding compression stockings were to hard to don with joints popping and weakened hands. Errant joints can be relocated far easier than blood can be forced against gravity.

I drop my pen as my grip loosens. My writing becomes shaky. The letters no longer form correctly. Another force is at work. The pen over shoots and slips. Pieces of words are disordered. My wrist aches with the effort to control the now serpentine pen that writhes in my fingers.

And still no one notices.

I sip slowly, the cup resting against my lip. Propped to hide shaking hands. Sip millilitre by millilitre. Little more than a light brush on the tongue. I play the part of coffee drinker number 3. An extra, with one line of dialogue. I want to change it. Make it “These pretzels are making me thirsty”, but don’t know if the twenty-something waitress will understand. Or if it’s utterance will break character and my status as ‘other’ be revealed.

My walking stick blends into the black divider next to me. A quick glance as staff and customers pass by will never give them the data they need. You can’t spot it, the sickness and disability. I hide in full view.

Pretender. Actress. Playing the part. The music mutes in my ear and the world shifts to grey. It snaps back and the moment passes. The pause in my pen not enough to raise suspicion.

I tell myself ‘they’ are all okay. That no one else in here is like me. In tattered pieces. They are all perfect, with perfect lives. My logical brain knows that odds are at least one other person in here has a disability. That even more live with illness in some form. Maybe even one like me, wading through disappointment, confusion and pockets of fear. How many are also playing the part? Who see me as their version of perfectly regular. We are an ensemble cast, where none of the actors know each other.

I look longingly at the cakes in the display case. Not one I can eat despite careful inspection. White tags with block letting shout out seductively. “Just a little bit wont hurt.” “Just a bite.” “You can take the rest home.” “It’ll be worth it.” I hear the woman next to me “I’ll have a slice of the Hummingbird, thanks”. In my head a snide, bitter, voice mimics,“I’ll have the Hummingbird”. I shove it down and sip my cold brew.

I tap my feet and stretch my back. Shake my hands and rub my forehead. The clinking of the cups behind the counter seem distant as I start to slump. And still the mask holds in place. I alternate between Melpomene and Thalia, but to all around me I remain the forty-something women sipping coffee and writing, intent on her notebook.

Tick tick, the minutes pass.
A half hour pit stop.
Alone.
Which is rare.

But I push myself to try more. To take the risks. To be like all the others. Because while I act the part I can pretend that there’s no bad news. That there’s no more pieces to the puzzle to cloud the picture further. That I'm not still waiting and hoping. For clarity and answers, that part of me knows are unlikely to eventuate, but just may. And I'm not sure what scares me more.

But for now I sit camouflaged on the black faux leather, at the square black table and sip the dregs from my cup. Just another customer. Like any other. Regular. Normal. Okay.

Michelle

I do like the last lines of this song (though my man is still here) but my nerves are shot and my hair full of glitter under the dye, and I do love to sit and sip a long black. Sing it, Ella.

My nerves have gone to pieces

My hair is turning gray

All I do is drink black coffee

Since my man's gone away

Up and Dressed

(Trying to do my best Delvene Delany. Look at this fabulous clocktower.)

I've been getting dressed since last month. I've missed a couple of days here and there where my body was more blancmange than viscera and bone. But since September I've been dressed more days than not. I hit 17 days in a row which is the most in, well I can't really recall how long, because it's been that long. I made a decision to get dressed each day. Preferable with a shower. Unlikely to include hair brushing. And not in any way likely to include make up.

It sounds small and ridiculous to mention. But I know that a whole host of readers will understand. Not just those with a form of Dysautonomia. But a whole host of people who live with chronic illnesses and disability that can make even the most commonplace tasks difficult. Time was getting dressed was just something that I did. I would dress for work, and for uni. I'd dress to take my kids to school or go to coffee. To potter in the garden and do housework. For most people it is an act with no thought. Maybe some irritation at having to dress in a certain way for work. Or a pain to get their hair dried and styled for work while multi-tasking making school lunches, looking for a misplaced shoe, feeding pets and making sure the iron is off. Pyjamas on weekends or on holidays were bliss. A treat to be savoured.

Recently I participated in Helen Edwards', from Recycled Interiors, 30 Days to a Happy Healthy Home challenge. When I say participated, I did bits and pieces that gave me the biggest bang for the buck, eg filled my home with flowers, and did the rest vicariously though the many fabulous photos people shared. But there was one day where the task was to stay in pjs all day. I looked at it and felt absolutely no connection to the task. I am in pjs most of the time. And their wearing didn't represent happiness. I read her piece on pyjama days and tried to pick where that simple act had moved from joy to chore. But there was no single event. Just a gradual movement. It snuck up when I wasn't looking. It was easy. And suddenly there I was. Miserable in pjs, not even good pjs, but sad comfortable flannelette that really should have been binned a long time ago.

In 2011 I was lucky enough to win a shopping spree with the lovely Phoebe from Lady Melbourne (more here). My request back then was to find pj alternatives. Fashionable comfort. I knew back then that I was slipping. And I needed a boost and Phoebe and the stylist delivered. I needed it back then and I need it now. Bad news, new problems and a perceptible decline have weighed me down. More than I want to admit. And the spiral down was beginning again.

I have written a lot about my love of fashion over the years (eg here, here, here, here, here, here, here). I've gone out of my way to find fashionable compression stockings and comfortable clothing. I applaud, Karolyn Gehrig's #HospitalGlam initiative. I even used fashion to raise funds for Dysautonomia research. There is a need to hold onto my old self who loved fashion, within the constraints of my health and my non-existent budget. But I get stuck at times.

When my body is hurting and my heart along with it, doing becomes difficult. My clothes tend to reflect my mood and my mood reflect my clothing. So I made a decision. I decided to get dressed. Not only get dressed, but take a photo to prove to myself that I did indeed get dressed. I'm not sure how many days I've done it now. In a sense the number doesn't matter. When I look through my Instagram I see photo after photo of me dressed. It reminds me that I achieved something. A small something but a something all the same. It's surprising what that does. It tells me I can. It tells me that I am still here. It tells me that I am living life. A changed life. But a life nontheless. I look at the pictures and there is a hint of the old me. A hint of what still exists under the layers of illness and exhaustion.

A friend asked me if it was worth the effort. And the simple answer is, yes. For me it is wholly worth the effort.

Will others agree? Some will and some wont. We all have to find what works for us. What is worthy of the effort. What it gives back.

For me getting dressed and remembering fashion is worth the effort. It helps my mood. It reminds me of me. There has been a joy in uncovering clothes I had forgotten. Clothes that have stories and hold memories. I have been a bargain hunter for years. $20 was always my magical figure and one I still use. The better the bargain the more satisfaction I felt. I don't pretend I have style. And I've never really followed trends. But it's not about that. It's an expression of me. And in the end it brings me joy.

(All frocked up and occasional places to go besides my laundry or house entryway.)

At a time when writing and 90% of other parts of my life are difficult it is a small act that is achievable and meaningful. For me it works.

Plus, I want to get back to a place where being in my pjs is a luxury, that I can enjoy.

Michelle

If you want to follow along or join in, please do. You can find me on Instagram @michelle_roger (As it's sort of evolved organically I haven't really thought of a hashtag though I've been using #upanddressed as that's pretty much my achievement.)

Given I've just seen the David Bowie exhibit at ACMI this seems an appropriate musical accompaniment. Go along if you can it's fantastic.

Smile.

(source)

The last couple of days I've made a change. I decided that I would try to get dressed everyday. I know getting dressed plays into my mood. Feeling physically bad leads to feeling mentally bad, leads to feeling physically bad, leads to...it feeds off itself. Feeling bad I am more inclined to stay in my pjs all day. The effort involved with showering and dressing is hard to explain if you're not chronically ill. But it's enough to know that it's prohibitive, and soon my appearance mimics my mood and body. When I get stuck in those ruts I feel worse and I really have to fight my way back out. When I put up the first photo yesterday I added a bracketed message about why I was't smiling.

Today when I shared the Instagram post on my Facebook page I wrote the same message....

(Can't smile as my facial muscles wont cooperate today, Mr Grumpy always says that it's my 'tell' when my face is flat and expressionless. Joy.)

....and it irritated me.

I've stewed on it all day. Why did I write it? Why am I apologising for something I have little to no control over?

The reality is that it's a physiological issue. Since I became ill I have developed progressive issues with my facial muscles. Initially, it began with a left-sided weakness that would appear when my symptoms were flaring. The left side of my face would become lax. I'd end up with ptosis and my mouth would droop (my delightful children called it Stroke Face, and it was always an indicator I was really unwell). When my overall symptoms improved, it would improve.

Soon the sensation on that side was permanently affected. It felt swollen and tingly. When I touched the flesh of my cheek it felt odd. Soon the droop stopped completely resolving. Now it is more obvious even on good days, becoming worse again when my symptoms flare. My eldest son, a photographer, took a photo of me last year and the difference in the muscles of my face was clearly evident when I attempted to hold my mouth shut. A wasting on the left, not matched on the right. A wasting in muscle that was matched by increasing weakness. The more I concentrated and tried to force the muscles the worse they behaved. From chin to hairline none were doing what they were supposed to do.

A Single Fibre EMG (SFEMG) revealed myotonia in the left side of my face two years ago. Since that time my control of my facial muscles has slipped. I try to smile and I can't. Or I grimace. When I force my muscles into positions they jump and twitch. The top lip on the right side of my mouth curls up spontaneously. Every now and then I get lucky. But the frequency is decreasing and the pain it causes in my muscles on the left is often not worth it. Unconscious smiles occur, but try to force one for a picture and it becomes increasingly difficult or impossible.

Mornings my face is blank. No expression. I rub my facial muscles and move my jaw to wake them up, but it can take hours. I find myself absently moving my jaw side to side, up and down, constantly trying to shake the weird sensations and get the muscles to comply. Some days it'll remain expressionless from sun up to sun down, no matter what I do. Apparently the complete lack of facial expression is the family's new indicator that I'm not doing well.

I look grumpy or blank. Not by choice. By physical pot luck. And still I apologise and explain.

There is such a pressure to smile in our society. Especially if your'e female. If you don't, you have Resting Bitch Face (RBF). I think about celebrities like Kristen Stewart who are constantly criticised for their lack of smiling. Hell, I've made comments myself. Now I sit here typing and I can see my own RBF reflected on the screen and I think, enough.

As a woman you are told constantly how to behave and what you should look like. Like many others I've heard many variations of the classic line, "Smile, love. It can't be that bad". Or another favourite, "you're so pretty when you smile". Because as women we are supposed to smile, no matter what. And if we don't there is something very wrong with us.

I know I've internalised that line of thinking.

I know every time I apologise for my lack of smiling,
or look at a picture and my internal critic goes into overdrive at my grimace or RBF.
Time to say, enough.

Enough, Michelle.
Enough of beating yourself up for what you can't control.
Enough of feeling self-concious for not smiling.
Enough of explaining.
Enough of apologising.

The people who know me, know I'm a happy person.
And those who don't and judge, don't matter.

If not smiling is the worst thing I do, I think I'll be okay.

Michelle

*The idea that as women we should always smile is so ingrained in our society and I am not alone in being over it. Check out the Stop Telling Women to Smile campaign and art series.

Anyone who's read the blog for any length of time will know of my love of PJ Harvey. Her songs are so raw and unapologetic and my song choice for today is no different. Sheela-Na-Gig is unapologetic in composition and lyric, and fits my unapologetic mood today. As much as I hate using wikipedia as a source it has a reasonable explanation of the meaning behind the song, here.

Life with Chronic Illness is Incredibly Stressful. Ask the Question: RUOK? Not just today but all year round.

It's RUOK? day today in Australia and it's time to get involved. This initiative began in 2009 and has grown every year since. As the site explains:

"R U OK?Day is a national day of action dedicated to inspiring all Australians to ask family, friends and colleagues, ‘Are you ok?’ By regularly reaching out to one another and having open and honest conversations, we can all help build a more connected community and reduce our country’s high suicide rate."

"Connection and open, honest conversations are good for our wellbeing – whether or not we’re struggling with a problem. It helps us to feel valued and supported by the people around us. There's also an emerging body of research which links supportive social relationships and a sense of social connection with protective factors in suicide prevention."

As I wrote here the incidence of mental health issues such as depression or anxiety, are very high amongst those who live with chronic illness. As a group those with chronic illness are faced with illnesses and disability that are measured in years or, in some cases, life times. The physical toll is often high, but it is the mental and emotional toll, which often goes unknown by all but the sufferer, which frequently creates the greatest burden. It is important that we start the conversation about the mental health burden of chronic illness, particularly when it can often be managed successfully with appropriate support.

The issue is complex. Stress is often multi-factoral and many are reluctant to discuss their difficulties for fear of being perceived as weak or the stigma associated with mental health issues. Dysautonomia is an umbrella term for a complex series of disorders that arise from the malfunction of the autonomic nervous system. Some forms are rare, but even amongst the more common forms, they are rarely discussed and not easily identified. Patients often experience long and stressful journeys to diagnosis. Even once diagnosed, the complexities of the disorders and lack of information and treatment pathways lead to ongoing high levels of stress. Add to that the severity of sometimes disabling long term symptoms experienced by many and it is not surprising to find that if actually asked, many patients will respond that they may be functioning but they are not necessarily OK.

Those with chronic illnesses that are rare or poorly understood such as the Dysautonomias, often face a long and soul crushing journey to diagnosis. With symptoms that are frequently vague or fluctuating, patients are told "it's all in your head", "you just need to get out more", "you're depressed". These comments are rarely followed up with appropriate psychological support, instead many are faced with insinuation or outright accusations of malingering or lying. The story is repeated again and again on forums around the world. Even long after diagnosis these words continue to haunt patients who continue to hide their stress levels for fear of reigniting old accusations.

Being a chronic illness many find that their friendships and social relationships fall away over time. Friends who initially came around with a casserole or offered to take a child to school, call around with ever decreasing frequency or, simply disappear. Social isolation is a huge issues for many. Especially those patients in isolated or rural areas, or those in countries where little is known of the disorder. Even in larger cities and centres where there are more patients, it can be difficult to organise face-to-face meet ups with patients who are fatigued, have mobility issues and, thanks to the quirks of the disorder, may have to cancel engagements at the last minute. Whilst fellow patients may understand this, often friends and family do not and social invitations slowly evaporate. In my own case, many friends I thought would always stay by my side disappeared as my ill health increased. My circle of friends decreased over time until now I can count them on one hand. Although I would say chronic illness does aid in rapidly sorting the wheat from the chafe and whilst I may not have the same quantity of friendships the quality is far better. (online friendships have been a saviour, but that is another post).

Intimate relationships change. Husband and wife, becomes carer and patient. Trying to maintain a marriage in these circumstances can be very difficult without dedication. Often outside guidance and counselling is required to traverse the new and changing relationships. Marriage breakdown is common and even dating is often difficult. The strain of constant illness, inability or infrequency of intimacy, financial concerns, difficulty in maintaining roles such as house keeper, parent or cook can all mount to create problems in relationships. Additional difficulties can arise when a partner requires aid with personal care needs such as showering and toileting. Where does the role of husband stop and carer begin? Navigating these changes can be very difficult for couples many of who attempt to do this in private for fear of embarrassment or feeling like a failure. 

Parent/child relationships also change. Adult children may be forced to move in with aging parents. Conversely, young children can become carers for their adult parents. Parenting with chronic illness is difficult. Being able to care for small children when you can barely stand or are worried about passing out can be both heartbreaking and dangerous. Guilt is common. Even when the children enter the teenage years they may be forced to care for sick parents or are unable to socialise with friends and relationships can become strained. 

Many teenagers with Dysautonomia are unable to go to school or participate in regular teenage pursuits such as parties or sports. They are reliant upon parents at a time when they are normally asserting their independence. Again conflict can arise and strain exists for both patient and carer.

Work commitments are often challenged and unemployment is not uncommon for many patients. This creates not only a financial burden to families, but also a loss of identity. The first question asked at social functions is often "what do you do?" For someone recently unemployed this can be difficult to deal with and often those asking the questions are stumped as to what to ask next. For many, a career equals identity. We understand when someone says they are a doctor or teacher. There is a whole social schema that goes with each label. For many, myself included work was a joy. After years of study and working hard I had a job that I enjoyed and felt was making a difference in the lives of others. To give that up after a year of battling increasing Dysautonomia symptoms felt like the ultimate surrender. I felt like a failure. Added to that was the guilt of the financial burden I was placing upon my husband which was and continues to be high. 

Independence is often the first casualty of chronic illness. Simply being able to do the grocery shopping by yourself can be difficult. Many patients who experience frequent syncope are no longer allowed to drive which leaves them reliant on others for transportation. Being able to garden or go to the movies can be a Herculean task. A patients' identity can often seem lost with each small piece of independence that disappears. Spontaneity is no longer possible. A friend calling over for a quick, unexpected coffee can be overwhelming. Patients need to prepare for outings and entertaining through rest, medications, extra fluids and salt, after which they still may be unable to participate thanks to the unpredictable nature of the disorder. It is the normal social situations that others take for granted, particularly the small things such as going to a cafe, that are frequently reported as most missed by patients. And the inability to do such simple things often serves to highlight what they have lost.

Cognitive problems are also common in Dysautonomia thanks to poor cerebral perfusion, fatigue and medication issues. Patients are embarrassed by lapses in memory, inability to complete simple tasks, read a book or follow a conversation. For many, on a bad day, speech is impaired both cognitively and mechanically. Many withdraw from social interaction as they are either self-conscious or simply unable to take in all the competing information.

All of these issues are on top of the physical symptoms of the disorder with which patients contend with 24/7 (tachycardia, bradycardia, hypertension, hypotension, syncope, pre-syncope, weakness, fatigue, poor thermoregulatory control, gastrointestinal symptoms, urinary frequency, seizures, to name but a few). Whilst the physiological symptoms of Dysautonomia can be difficult to live with, it is the impact that they have on daily life, the social, psychological and emotional issues that many patients find the most challenging. 

The support for those suffering chronic illness is greatly lacking. Care fatigue ensues amongst friends and family as time passes and a patient either doesn't get better or, gets worse. Chronic illness doesn't fit into the normal sick paradigm associated with acute illness. There is no easily identifiable illness or injury, no clear and distinct treatment path and frequently no identifiable resolution after which the patient can resume their regular role in society. This leaves chronic illness patients vulnerable both medically and more importantly psychologically.

People stop asking if you're okay. As one of my readers wrote, "when I asked her why she didn't call to ask how I was, she responded "it's just your normal. I thought you were used to it"". Chronic illness patients are frequently forgotten until a crisis occurs. We develop means of coping, putting one foot in front of another, because there is no choice. There is no resolution as the disorder is chronic, you must learn a way to cope. Patients may smile and laugh , because they have learnt to find humour in the small things, but that doesn't mean everything is okay. It doesn't mean they are okay. It doesn't mean they are coping. Many are barely holding it together. Being strong for years on end is difficult. Sometimes we all need to be asked "R U OK?" 

Please take the time to ask the people in your lives R U OK? If you have someone in your life living with a chronic disabling illness like Dysautonomia take the time to truly ask "R U OK?" It wont take long and they will appreciate that you care. You don't have to solve their problems, just listen and be there. Start the conversation. 

If you are unsure how to ask someone, RUOK? Day has resources available. 

Importantly, if you're the one who isn't OK, but you're not sure how to tell someone or ask for help, they have information and resources here. 

You don't have to be in Australia to participate. Nor do you have to stick to one day a year. You can ask "R U OK?" anywhere, and any time. Start the conversation and change a life.

Cheers Michelle :)


If you like, feel free to share.

When the world is falling freshen up your flamingoes and listen to Ben Lee.

New symptoms, medication side-effects, and a cry on the bathroom tiles. That has been the last few days. Well, weeks in truth. And exhaustion. I can't forget exhaustion, even if I wanted. It's perched on my shoulder weighing me down, be it in bed, or on the couch, or lying on the grass outside.

Shut down. My body. My brain. The world. All of it.

My recalcitrant body is winning at the moment. I'm not sure we're even playing the same game anymore. All the old rules no longer seem to work. So more tests, more symptoms, more tests, more....ad infinitum.

Words don't come. Thoughts jumble, tumble, and fall away.

Pieces fall. And no one picks them up. I'm not sure that they can.

I sat in the garden and let the new Spring sun fall on my face. I looked over at Natasha and Boris, my garden flamingoes. They were faded and battered. Yellowed, pastel pink enamel, looking used and sad.

I focused on the faded colours and couldn't let them go.

Paint was bought.

Beaks and legs were covered in Glad Wrap and sticky tape.

Two layers of pink enamel and they were alive once more.

It's a small act in the big scheme of things. But it's something. I slept after. I lay down in between coats. But when I look out in the backyard today and glimpse their shiny pink feathers it fans a little spark in my heart. Keeps it alive for another day.

It's the small things that make it okay when the world is pulling you under and your reserves are spent.

#lookingup flamingo in the evening.

Michelle

In my tired state I couldn't find a clip to accompany the Ben Lee song, Everything is OK, from his new album Love is the Great Rebellion, but I like it a lot. It's simple and beautiful. There's a central couple of lines that are stuck in my head at the moment.  

(Here's a live stream version)

Everything is okay,

even when it's not

even when it's not.