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

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

2015 Write-ability Fellowship Applications are open. Time to suck up the self-doubt and apply.

Writing has been a godsend for me over the last nine years of illness. I'm not quite sure what I would have done if I hadn't found my words again. When illness came knocking I fell apart. All the pieces of me were scattered on the floor and I had no idea where to start to put them back together. Now as I sit here typing I realise I have managed to glue most of me back together. Not necessarily in the same way as before I became ill, but that's not a bad thing.

In many ways illness has allowed me to reinvent myself and pursue paths that I had shoved aside in favour of career, family and life. Writing was a natural outlet when I was younger. I used to watch black and white movies on the weekend and write myself into the plots. I'd read a book and write myself into the pages or fantasise alternative plot lines where I'd be slaying orcs or wandering over English moors alongside the main characters. Poetry and short stories were written in blue biro in the back of note books and in secret diaries. It was an important part of my life. 

Over time that writing went by the wayside, to be replaced by writing protocols and lengthy patient reports. Then illness hit and nothing. When 2 years later a social worker suggested that I start writing again I was unsure. But I took the plunge and rediscovered that old love. And those words and the process have had a healing effect. But my confidence still wasn't there.

"Each time the words build up and there is no room to breathe. Then slowly they trickle from my mind to my fingers and fall on the keyboard. I watch them appear on the screen in front of me, slowly drawing the venom from the bite of bad news. And then there's room to breathe again. My spirit is lighter and I can face the day. That is writing for me." (Writing Myself, 2014)

When the Write-ability Fellowships came up in my timeline I was reluctant to apply. I had been to a few Write-ability workshops and been both inspired and worried that I was in over my head. I saved the application form and closed the tab. I reopened it and closed it more times than I could count, convinced that I had no hope and that my writing was too poor. I wanted to write my memoir, something that was scattered in pieces throughout my computer, but my confidence and organisational skills were a mess. On the last day I had a "Stuff it!" moment and sent in my application with a sample of my work.

When I was selected it didn't seem real. I was shocked. I double checked the email to see if I'd read it right. And there it was I had been selected and was paired with a mentor. Sam Twyford-Moore was incredibly supportive and helped to build my confidence and writing skills. Books and writers I would never have found now fill my bookshelf. Aspects of writing I had never considered were discussed and knowledge generously shared. I was also given the boost I really needed to continue and finally a real "maybe I can do this" moment. 

To have someone in the field help, encourage and guide is a fantastic opportunity. Since that time I have direction. Outlines have been created to tame my scattered mind. And I received the kick up the bum I needed to get excited about writing again. Amazing what you can get out of 6hrs! 

Being part of that program opened up opportunities that I would never have imagined and while I still have a shocking case of Imposter Syndrome I am also content to call myself a writer without cringing (okay so there is still a little cringe of unworthiness, but it's a process and I am working hard to reign it in.)

I have been lucky to be introduced to what is a very welcoming and encouraging Victorian writing scene. I have spoken at the Emerging Writers Festival and had two pieces published by Kill Your Darlings and been part of the Day in the Life series during the Digital Writers Festival. 


Kill Your Darlings: 21
Sucker Punched: Ducking and Weaving Through the Grief of Chronic Illness. 

Kill Your Darlings Blog
It's All Just Preparation for the Zombie Apocalypse.

A month ago I sat in a freezing warehouse in the Melbourne CBD watching writers speak about their weird obsessions. I had just been up there myself, microphone in hand, opening up about my love of zombies. And I realised that life truly is unexpected and sometimes absolutely fantastic.

Now while not everyone dreams of talking about zombies at a writers' festival, you never know what the future may hold. If I had never taken the plunge to apply for a Write-ability Fellowship last year I know it would not have happened.

If you are a Victorian resident who lives with disability and loves to write I encourage you to apply. Poetry, screenwriting, memoir or fiction writing it doesn't matter. If you think you've got what it takes, or even if your confidence is not just in the toilet but flushed and on the way for processing, take a deep breath and apply. You can hyperventilate into a brown paper bag later.

Even if you don't get selected in this round, I encourage you to head along to one of the Write-ability workshops or monthly get togethers and join Writers Victoria (very affordable if you live in country Victoria.) 

Applications close: 5pm Monday 3rd August 2015

4pm, 4th July 2016
4pm, Monday, July 10, 2017

Apply here

Michelle

I thought this an appropriate musical accompaniment. I used to have a very particular view of what of what I wanted and what my life would look like. Then my world fell apart and came back together to give me just want I needed. 

Reinventing my Routine: Finding What Feels Good doing Yoga with Adriene.

Earlier this year I was featured for the Digital Writers Festival as part of a collaboration with the lovely Madeleine Dore from  Extraordinary Routines. I discussed my day and shared photos of my writing routine. My routine had elements that I tended to use every day but I had no real timeline for how my day would play out.

Living with an unpredictable chronic illness like Dysautonomia, plans and strict routines can be more depressing than helpful. Each time I failed to meet a deadline or complete a To Do list (or lost my To Do list!) I beat myself up. A trait I learnt back in the cradle. I wasn't giving myself any compassion or understanding and stupidly ignoring the physical impediments that were frequently out of my control. In writing out my day I realised how fluid my routine had become. Apart from taking medication and my morning shot of caffeine there was little structure.

This year I have found it hard to find a break in symptom flares. If it's not Dysautonomia it's a migraine, or a flare in my gastric pain, or a bowel that stops working, or my heart throwing up new problems, or....the list has been never ending. And with that I have lost most of even my tenuous routine. Recently I realised the lack of routine was starting to affect me negatively.

When Madeleine recently asked the question,

One of the most delightful things about rituals and routines is how effortlessly they belong to our days and shape who we are. That morning coffee, the way you tidy your desk before you get started, that sip of wine after work where you let everything escape from your mind 🍷🙊 But sometimes routines and habits are stubborn. No matter how many times we mark something on our to do list, we just can't make it work. We can't rise at 6am, or write those two pages of creative prose every morning. We miss coffee dates, skip exercise and procrastinate. We want to hear about that one habit you wrestle with. Comment below and be in the draw to win a double pass to an Extraordinary Routines - In Conversation event at @emergingwriters ✌️

A photo posted by Extraordinary Routines (@extraordinary_routines) on May 20, 2015 at 4:05am PDT

yoga and mindfulness (which I'll discuss in another post) were two aspects that came immediately to mind.

Now admittedly my neuromuscular weakness, disc problems, and autonomic issues make activities like yoga difficult. I can't stand for long, or frequently short, periods and holding certain poses ends with my weak muscles shaking and giving way. Not to mention exercise intolerance. But I know from experience even simple yoga stretches make me feel lighter and in turn calmer.

Earlier this year I was alerted to a 30 Day yoga program run by a yoga teacher from Austin, Texas.  30 Days of yoga with Adriene, made me realise how much I missed the practice. What I liked most was Adriene herself. She is relatable and easy going. Her motto of Find What Feels Good resonated. This wasn't a program where I felt like a loser when I couldn't do the poses or finish a full day. I didn't feel bad when I skipped a day or two as my body played up. And I did A LOT of child's pose when I was unable to keep going or needed a break. But at the end of each session I felt like I had achieved something.

And then I stopped.

Life, or more my body, became complicated yet again and I didn't keep going.

I had subscribed to Yoga with Adriene on Facebook but just flipped past the posts as I fell into a familiar, comfortable, apathetic, life sucks, pouting, mode. Then about the time Madeleine asked the question, a link to Adriene's video for Bedtime Yoga* popped into my feed.


 
At a time when stress and insomnia were taking turns to give me atomic wedgies, it stood out. So I clicked on the link and fumbled my way through the sequence.

And I enjoyed it.

I didn't sleep better, but tension was lessoned. And I finished the whole sequence. A small achievement for sure, but it's surprising how good that can feel. So I did it the next night. And the next. And the next. I may not have been sleeping but I was more relaxed. Given that my insomnia is a creature of years I don't expect that it will disappear after a couple of weeks of yoga, but I am enjoying the process.

The sequence is easy and as ever Adriene is encouraging and relaxed. Find What Feels Good resonates throughout. Plus she makes a joke about her "rack" and that made me laugh. A yoga teacher that is not only relatable, not cracking the whip because you don't find your inner light or do a move perfectly, and makes a boob joke? That suits me to a T.

(Must get one of these)

Recently I decided to incorporate her Morning Yoga sequence into my routine.



Similar to the Bedtime routine it is easy and slow. I have tried other morning routines in the past and they were so quick and energetic with little time between moves. And filled with jargon. And I quickly gave up. On the bad mornings (well really it's more a brunch yoga than morning yoga, for me) I only do the lying down movements and only the bits I can, but at least it's movement and I can even do that in bed.

Plus all of it is free on Youtube. And free is a priority for those of us who pretty much need to sell a kidney just to pay for our continual medical needs. Given I can no longer drive, it also takes out the need to organise lifts to yoga studios, yet another bonus.

My routine has expanded and is now bookended by these two videos. I lie here on my yoga mat in my lounge room in country Australia and follow videos from Austin, Texas. And feel lighter.

Now if only I could stop Freyja from coming to check on me when I am lying on the floor with my eyes closed. An unexpected face full of Great Dane breath or a forehead lick does break through the relaxation aspect a bit.

I'm working on other parts of my daily routine. The balance between structure and flexibility can be hard one. Especially when you are living with complex chronic illness. But factoring in a bit of self care during the day is worth it. Even if I forgot for a while.

Michelle

*As always, before beginning any exercise program you should check with your doctor that you're okay to start. And not everyone will be able to do even these easy yoga poses. And that's okay. Mix it up. Do what you can. Don't force it. As Adriene says Find What Feels Good.

Sing it Nina, Feeling Good. This is one of my favourite pick me up, belt it out songs. My scatting needs a lot of work but I always feel like I can kick some serious arse after singing along.

Feeling Good, Nina Simone by mrfnk

No News Week: The Womankind Challenge

Back in February Womankind magazine put out a challenge. Have a week with no news. Write about it and send it in for a chance to have your story published. I had the week without news. I even wrote about it. Before promptly forgetting to send it into the magazine. In the process of cleaning up my cluttered desk top I found it again, two months late. So here it is my experience of a week with no news. 

I wake each day as our neighbour's growling four-wheel drive reverses past our headboard and out into the street. Thin walls and a driveway less than a metre from our bedroom negating any need for an alarm clock. I turn my head and reach for my phone. The routine ingrained. But not today. Today I pause. No news. The parameters are clear. The challenge accepted. And already I am chaffing at the bit. My fingers hover over my phone aching. But one click and there it'll be. The weather forecast on the screen. The light flashing to let me know of messages and alerts from Twitter, Instagram or Facebook. Social media my all to willing dealer feeding my news addiction. Politics, asylum seekers, disability advocacy and health reform, women’s issues, I follow it all and I follow it ravenously. Cold turkey is not an appetising option. But how to avoid news not just for the day but the week?

News filters into every aspect of life. The Borg were right, resistance is futile, at least if you interact with the world. I can refuse to click on my phone or open my laptop. I can turn off the television, and car radio. But head to a public space and all bets are off. Radios play in the shops and boards sit out front of the local news agency holding headlines from the major news outlets. Glossy magazines glare at me at the checkout and flat screens play overhead. Even in coffee shops wisps of news flow from conversations at surrounding tables. Short of becoming a hermit it is near impossible to avoid.

I recall as a child the hourly news on the radio, the daily newspaper and the nightly news. Now a 24 hour news cycle and rabid adoption of devices and a need to know, make the news part and parcel of life. A constant whir in the background even when you're not consciously attending.

There's a pressing feeling of being out of touch. Of missing out. I pride myself on being up to date on major issues both here and abroad. I discuss international politics with my children and watch news documentaries as a family. To not have that link. To feel out of place. Out of line with the rest of the world. Of time moving on and falling behind. Twitching fingers and twitching mind. Used to being fed continuously. Instant gratification available at the tap of my thumb.

Silence. A week on, no news means silence. But the silence is not without noise. Instead of the noise of multiple lines of information, it is the noise of the bird song and breeze. The turn of a page as it scrapes against my jeans. The soft snuffle of my dog tangled around my feet. St Louis Blues coming from the lounge and the tap of the keyboard as I write without interruption.

Clarity with the silence. A rejection of news and technology for a less cluttered mind. A welcomed tradeoff that I had underestimated. Half-way through I realised I wasn't missing the news. I wasn't missing the noise. Once the restless agitation of cold turkey had passed I felt the calm. News is so much bad. Pain and horror. Disappointment at the political discourse and a sense of hopelessness at the tone of the world at large. The meaninglessness of celebrity, dross that fills the airwaves. The good works and silent struggles forgotten in favour of the sensationalism and repetition. Not putting my feet in that foetid pool is quite good for the soul. My family interrupted my embargo to tell me of the passing of Leonard Nemoy. Spock no more. But it was the only news I consumed in the seven days.

The world meanders on changing little over the week. When the screens are lifted and I emerge once more into the world of news the same conversations continue. The rhetoric of the politicians the same. The evening news follows the same patterns. The stream of Twitter continues as outrage mixed with unoriginal memes. The lives of friends mattered but the news as it is presented online and in print are seen with a level of clarity. Step back. Be more discerning. Turn it off and listen to the bird song more.

Michelle

Writing Myself.

(source)

We were on our long drive home from the city after yet another disappointing and disheartening medical appointment. I was contemplating the injustice of the world, the universe, and life in general, and a blog post was already forming in my head. Words and phrases, the panacea to life's ills. If I could order my thoughts on the drive, I knew I could transfer them to my laptop when I finally made it home. I could write a post. Get it all out. And move on. In that moment I knew the need for words. No choice in writing. Just pure need. If people read, great. If they understand, even better. If no one reads or understands, the need is still there. And words will be written, if only for myself.

Each time the words build up and there is no room to breathe. Then slowly they trickle from my mind to my fingers and fall on the keyboard. I watch them appear on the screen in front of me, slowly drawing the venom from the bite of bad news. And then there's room to breathe again. My spirit is lighter and I can face the day. That is writing for me.

I've been ill for eight years now and the last year has been particularly challenging (multiple ED visits and my specialists admitting there's little more they can do for me). And yet I've taken leaps of faith I may not have without that sense of having nothing left to lose.

When I finally had to admit just how ill I was and leave work in 2008, I felt defeated. Work was my life and I didn't know who I was, or where I was going any more. In 2009 a lovely Social Worker I was seeing, suggested I start writing again. I used to write when I was younger, but life had gotten in the way and it had simply slipped aside. Slowly, I started putting words to paper. I showed her, then on her insistence, my family and some other therapists I was seeing. Eventually I started blogging. And in the process I found a renewed love of writing. Therapy in a sense, just in the shape of a keyboard. But I never had the confidence to go further.

Then in 2013 I went to my first Write-ability workshop, offered by Writer's Victoria and Arts Access Victoria, and I began to believe that maybe, just maybe, I could take the next step. Another Write-ability workshop this year on Memoir and my confidence and excitement grew. I took a leap of faith and offered up a piece for a Write-ability Salon at the Emerging Writer's Festival, and suddenly I was in front of a room full of people sharing my words. Then, more recently I took a deep breath and applied for one of the Write-ability Fellowships and was lucky enough to be selected. And suddenly I feel like I can do this.

I wonder if I would still be sitting in my bedroom tapping away at the keyboard and hiding my words in the safe zone of blogging, if not for the Write-ability program? In all likelihood the answer is, yes. Becoming seriously ill and living with a progressive neurological illness challenges your sense of self in ways I cannot fully articulate. For a long time I thought I had nothing to offer the world as who I thought I was, was slowly stripped away piece by piece. And my confidence took a battering in the process. But now there is a real light in my life. I may not have my health but I do have my writing, and a new sense of confidence. Where it will lead I have no idea, but I am ready for the ride. The Write-ability program has been a huge part of that realisation.

So I wanted to take the opportunity to say thank you to both Writer's Victoria and Art Access Victoria, for creating the Write-ability program and for the fantastic team headed by Fiona Tuomy. It provides so many great opportunities for writers with a disability and means a lot to me, as a woman muddling through life with an acquired disability, and I know to many others.


Excited to announce that I was awarded a Write-ability Fellowship recently. Can't wait to start the mentoring process with Sam Twyford-Moore.

Michelle

For those who missed it, this isn't the best quality, but it's my first time publicly reading my words. And the first time since I left work where I've done any public speaking. I've presented research in a room filled with a couple of hundred other researchers, but this moment was one of the most anxiety provoking I have ever experienced. Plus, I had only been discharged from ED two days beforehand, so not in the best state. Go the power of good pain drugs! And supportive family and friends who convinced me I could do it.

Reclamation.

(Picasso, Woman at the Mirror, 1932, oil on canvas, Museum of Modern Art, NY) 

Mother.

Daughter.

Wife.

Sister.

Purveyor of sandwiches.

And bandager of knees.

She is the girl who wears green jumpers.

She is the girl with red shoes.

The girl who writes.

The girl who eats brown sugar straight from the jar.

The sick girl.
The quiet girl.

The good girl.

She is the construct of the perceptions of others.

She is all of these things.

She is none of these things.

She pulls the flesh from her body.

Slowly at first.

Then faster and faster.

Until all that remains is an amorphous pile of flesh and bones.

She surveys the pile.

She pokes and pushes.

Lifts and twirls.

Each fragment inspected in detail.

A lengthy process of selection and exclusion.

Understanding is reached.

A decision is made.

Excitement builds.

She begins building herself anew.

Piece by piece.

She selects what she wants.

What has meaning.

What feels true.

The pieces that are her.

Slowly the pieces coalesce.

They shudder and strain.

They intertwine and weave.

A portrait of herself of her choosing.

Others see the new her and shy away.

This is not the girl they saw.

The girl they knew.

The girl they were comfortable with.

This is something new.

Strange.

Wild.

Untamed.

The new her jars.

The new her challenges.

The new her blinds those who cannot see.

She walks tall.

She dances as she moves.

Her body fluid and right.

She has found her at last.

Her voice is present in every movement.

In every action.

In every word.

In the angle of her head.

And the song in each breath.

She stores the other pieces.

She reworks some.

She sees potential in others.

She stores them for later use.

For future changes and new possibilities.

She was always there.

Under the layers forced upon her by others.

But now she can finally feel and see and hear and know the lightness of her essence.

The lightness of being.

The lightness of reclamation.

The lightness of her.

Michelle

I found this bit of writing in an old notebook. I used to write whilst I sat in the car waiting for my boys to finish various after school activities. I have a collection of pieces of paper and notebooks with all my scrawled half-formed ideas. 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

I Don't Know About This, But I'd Like To: Day III NHBPM

(source)

Well after staring hopelessly at the potential topics for today Mr Grumpy piped up with his usually witty suggestion. I knew I shouldn't have lamented my braindeadedness (Yes that's a word. Okay so it's a very new word. That I only just made up about 10 seconds ago because of said braindededness, but a word all the same, or at least for the purpose of the post).  Note: Mr Grumpy just pointed out I should at least be consistent with the spelling of my new word. But I say bite me fat boy. I'm living on the word-creation edge. (Okay I may be a bit tired and stroppy, and on the verge of insanity at this point. A combination of 3 Posts in 3 days and an uncooperative body (leg coordination is over-rated, right?) is a recipe for much in the way of pouting and exhaustion).

Mr Grumpy: "Well, you don't have to write a 1,000 word post every time"

Me: "But that's the way I roll, baby"

So his choice,

“I don’t know about this, but I’d like to.”

Why? Because I don't know how to write a short but still interesting and read-worthy blog post, but I (or so he tells me) would like to learn how.

Pithy really isn't my style. I don't really see the world in black and white. And tend to be one of those annoying people who gets stuck on tangents hence the prominent use of the phrase "but I digress" throughout this blog.

I blame the brain fog. I know I had a brain that was capable of short succinct writing at one point. I've tried to read my thesis and old reports and the patient information sheets I wrote up for work and they were smooth, short and to the point. But now? Now I have a bad case of the verbal diarrhoea.

Maybe if I had time, like a week or six, I could cut back on what I write. Edit it within an inch of it's life until I have the perfectly formed 600 words of witty, educational and entertaining prose. But the pea-souper that currently resides in the space formally occupied by my brain, is not that accommodating.

I am distracted by bright shiny objects on a regular basis. My thinking is more of the tortoise, than the hare variety. My memory more akin to Guy Pearce's in Memento. That damn pesky need for blood to flow to the blob of grey matter slopping around in my skull, causes all sorts of problems. And don't get me started on those unpredictable adrenaline surges that leave you feeling like you must move or you'll go insane from the internal twitchiness, even though you are beyond exhausted, and fracture your thought processes beyond repair.

What's a girl to do. Personally, I'm thinking eat way too much chocolate and tap away at the keyboard until my fingers are naught but bloody stumps. Surely somewhere between the first 500 words and the last 500, some form of coherent thought will emerge. Plus, those of us with the old hypoxic brain seem to develop an amazing skill: the ability to read each others words and find the sum of all the disparate parts, and understand exactly what each of us are saying.

Okay I'm going to stop now before Mr Grumpy looks over and makes some more sarcastic comments like,

"You're still typing?"

Yes dear I'm still typing, you are soooo observant!

Okay so after that great mix of randomness I will now head off and stick my feet up a wall and wait for my limited blood supply to glug back down to my brain. But at least I managed three days of blog posts in a row. I'll put that one in the win column for today.

Have I learnt to write a shorter post? Probably not. Maybe I can start a new meditation mantra. Good bye "So Hum". Hello "Short Post".

Damn, now all I can think of is Short Round, from Indiana Jones and The Temple of Doom. There really is no hope.

(photo)

Cheers
Michelle :)

PS Now Mr Grumpy says "Just what your readers want. A for-the-sake-of-it post with no entertainment value whatsoever". Bwahahahahahaha he's such a funny man.

PPS As I go to put the laptop aside to eat dinner, "Have you pressed save yet? You don't want to lose that literary masterpiece. It's definitely Pulitzer Prize worthy". The man is on fire tonight.

Earlier Instalments of NHBPM
Day I: Why do I write about my health.
Day II: Find a quote and use it as inspiration.