Thursday 23 July 2015

Hear me.

A Facebook page I follow, recently asked those living with invisible disability:

"What's the one thing you wish people would say to you?"

It took me a long time to think of an answer. Admittedly, I have tipped over to the visible disability camp the last few years, but I still get the "but you don't look sick/disabled" comments with such frequency, that it would seem that I still fall into the not looking sick/disabled-enough camp. Go society and it's continued desire to hold on tightly to the myths and stereotypes around disability. But, I have spent enough years in the invisible camp, that it's legacy is still keenly felt.

A version of "I believe you," was sought by many. As was "What can I do to help?" I understand both of these. Belief was definitely lacking at the start, be it strangers, friends, family or medical practitioners. It was frustrating and disheartening and left me feeling alone. It also took a huge toll on my self-confidence as I internalised the lack of belief and started to doubt myself. Am I really sick? and Should I really just suck it up? were on repeat in my mind. And they were destructive. The current state of my body makes a mockery of those questions. Even at the start, passing out and a heart rate that wanted to go from bradycardia to tachycardia on a never ending loop wasn't exactly normal. Belief became my holy grail. It continues to be the holy grail for many. Sadly, even with concrete diagnosis belief can still be a missing factor. As such an expression of belief is understandably, high on the list of many.

A lack of help is another I understand only too well. As I wrote in No Casseroles for You, help is not often forthcoming for those with chronic illness, many of which are invisible. Often just like you can't see a chronic illness or disability, you cannot see its consequences. Alternately, it's chronic nature leads to care fatigue for those around us. When a disorder is measured in years or a lifetime, it is hard for many to maintain caring for that length of time. There are certain illnesses that are known as casserole illnesses. Those whose name inspire instant understanding of need and seriousness. That activate whole communities to action. And then there are those like Dysautonomia that are never, or rarely, invited to the party. Having said that, I know from friends who live with the well known casserole illnesses and, if they continue on over time, even they experience the effects of care fatigue. The inundation of initial help has an unmentioned but clearly defined shelf life. After which it dwindles away. If this happens for the well known disorders what does that mean for those of us who aren't even in the running? How I longed for someone to bring over a meal or offer to vacuum. Especially in the early days where I left work and was struggling to find medications that took the edge of my symptoms. But apart from two people, who have very generous hearts, it never eventuated. Outside of a couple of specific disorders, there were simply no services for seriously ill mum's in their 30s in my region. And living in an area with sparse general services, if family and friends didn't step up, you were left to fend for yourself.

I know all of this, but still I struggled with a response to the question.

When I sat and thought about my experiences, I realised that I don't want the people around me to say anything.

I want them to be silent.


I want them to hear me. 

Really, hear me

In essence, both of the responses regarding belief and help are also about hearing. Hearing exactly what is going on. Hearing what my doctors have said. Hearing the expert knowledge I have about my life and disorder. Hearing about my needs. Not the needs you think I have. I still have vivid memories of the wall of milk that turned up on the doorstep of a family member after the loss of a loved one. Milk. We were trying to find places for milk for days. We froze it. Drank it until we were sick and threw out all we couldn't get through. I understand that people wanted to help. To do something. But 2,000 litres of milk was not a kindness. The community saw a need, but they didn't take the time to ask how that need might best be met. Even when other options were suggested, the tsunami of milk continued.

Hearing would alleviate so many problems. And part of truly hearing is active listening.

Active listening has a number of parts, but this is the one I really wish others would employ.

(University of Adelaide: Active Listening)

Illness comes with a whole host of judgments and assumptions. I should be better by now, I don't look sick or disabled enough, I just need to exercise, be more positive, I don't complain so I must be coping, I don't need help, it's not that serious, it's not like I have [insert illness of choice], if So-And-So can do it, so can you, ..... The judgements are automatic and fired off with relentless regularity. So much so they are parodied on many patient support sites.

They are so ingrained that many do not even realise that they are seeing you through that lens, or that their responses are influenced by those negative beliefs.

I don't want people to say anything in particular to me. I just want them to hear me. To actively listen when I speak. To understand that I am the expert in me and my needs. Being chronically ill is difficult, but so often it is not the illness or symptoms that end up being the hardest part to deal with. Instead it is often the reactions of others to our being ill.

I would add that we are not a homogeneous group. We do not all have the same experiences or needs. And our needs may be very different to what you would want in the same circumstances. When I hear fellow patients being told they are ungrateful for simply saying that they didn't need a particular form of help, or suggesting another way to help only to have it dismissed, it is clear that active listening has not taken place. That they have not been heard.

I know people mean well. I know they don't intend to make the lives of the invisibly ill or disabled harder. But as the old saying goes, the road to hell is paved with good intentions. Stop. Take a step back. Check your assumptions at the door. And listen.

Active listening is a skill. It is not instinctual for many, but it can be learnt. And that is a kindness to all.

Hear me.

That is the one thing I want from others.


The Ramones, Learn to Listen, (1989)

Wednesday 22 July 2015

High Voltage

There's a park across the road from my house. Straight across. 50 paces at most. I've been there twice since we moved here 18 months ago. I watch the neighbourhood kids ride their bikes and argue over who's turn it is next for the swings. Others walk their dogs every night. The lady with the two golden boxers that prance and bound. The older couple with the tiny white puff balls assured they own the world. That one guy who refuses to leash his dog and starts the raised hackles and lunging.

I envy them. The normalcy of life. The ease with which they walk. It's a chore for some. You can see it on their taut faces and hunched shoulders. Especially on the cold nights. Of which we have many of late. Winter is biting and walking at dusk is not a pleasantry. I don't need to see their faces, hidden beneath scarfs, flipped collars, beanies and tucked chins. Bodies are contorted to their smallest in a hopeless attempt to avoid notice of cutting wind and sharp air. Pace is quickened lured by waiting heaters and warm meals. All of them have one thing in common. They are unaware of the gift that they experience.

Walking isn't something I ever really thought about. I just did. I got up. Moved my legs. And off I went. I walked around shopping centres. With my dog. Though the NGV. Across Vietnam. I thought about it about as much as I thought about my ability to be independent. Which is never. Then I became ill and walking became complex and independence faded.

On a bad day I cannot walk. Mr Grumpy has picked me up off the couch on more than one occasion my legs little more than useless lumps of flesh. Other times they crumple beneath me. I have crawled around my house. From bed to bathroom and couch. I have moved from chair to chair to chair throughout my house. On good days I can walk a little. But my limbs fatigue. As distance and time increase I am reduced to little more than shuffle. I watch my feet as I walk and hear them them scrape slowly across the ground beneath my sensible soles. My knees stop bending and my muscles start to forget how to coordinate. I end up at a snails pace. Exhausted. Trembling. On a good day.

I don't tend to walk anywhere alone. My confidence is shot. In my honest moments I know I'm unsafe. I know that I'm a fall risk. I know. I now know I am a fracture risk should I fall. I know. But I long to walk alone.

I have a wheelchair, Vera, but I can't self propel. I am bound not to the chair, but my weakened limbs. Nearly 8 months later I am bound by an OT referral and review that are yet to eventuate. I am bound by a lack of funds that mean I am unable to upgrade to independence without subsidies and referrals.

Last week I had a Fuck It moment. I went for a walk. I was home by myself. There was no discussion. No one to talk me out of it or suggest they come along. I just did.

Don't think. Do.

I grabbed Francesca, my walking stick. Wrapped a scarf around my neck and stumbled out the door. I steadied myself on the edge of the house and let my body find some sense of equilibrium. Let go and walked.

Down the driveway and on to the road. At the bend in the road ahead sits the blue-grey electricity box. My goal. An unimpressive dusty metal box next to the pathway into the next housing estate. Not the logical choice of inspiration. A utilitarian blight on the landscape. A shining point in the distance. A need and a want. Mindless stubbornness matched perfectly to bland vented mechanics.

(It's up there in the top left corner. A square smudge of blue-grey.)

The local magpie family sit in the road ahead. The same family that take up residence on the fence and taunt Freyja with their warbling chorus and flapping of wings. Just out of reach. Ignoring her barks and excitement. Occasionally they fly up in a burst only to land a mocking one metre further down the fence.

They swoop each other in play. Sing and glide from light post, to fence to tree and road. As a group they rise from the bitumen to land in bushes and bare branches as I approach. Only to land behind me once more as I pass their roost.

Watch the dip. The glide. The bickering. The song.

And then I was stepping up on the rough walkway. Overturned earth and weeds of construction. The pile of car window glass and lolly wrappers. Touching the cold blue-grey metal and the High Voltage sign. Unbending resisting fingers to lay my hand flat against the dusty paint.

Metal against my back I looked back at my house. Ragged breaths waiting to be caught. So close but so far away. And so pleasing. A rest. A stumble and false start. And then back I went.

The same magpie clan warbling on the fence. Singing as I continued my slow and unsteady steps.

A moment of "this was not a good idea, Michelle," as my blood pressure started to dive and my legs tremble. But stubbornness and an overwhelming desire not to faceplant in the middle of the street can work wonders. I have no desire for a moment's independence to be trampled by strangers picking me up off the road.

The wind crisp. The sky grey. Glorious.

Don't think Do. Don't think Do.

I stumbled across the word 'Ukiyo' the other day.  The floating world. "living in the moment." That's where I exist most of the time. Where I exist in walks that thought and planning would otherwise tell me no. Ukiyo. The perfect word. Do and enjoy it. Do free of the bothers of life and broken bodies.

I made it back to the house. Opened the door and slide down to the tiles. I made it. I did it alone. And no one was there to reprimand or fuss. Well except for a Great Dane who thought that I had left for ever and was overjoyed at my return, and concerned that I was lying crumpled on the tiles.

I did it.

It wasn't a chore. It was icy cold but I didn't care. And I was fully aware of the gift.

(Resistant facial muscles make a smile hard, especially on the left side of my face. 
But sometimes the effort and post smile pain is worth it.)


You ask me why I like to dance
And you ask me why I like to sing
And you ask me why I like to play
I got to get my kicks some way

(High Voltage, AC/DC, 1976)

Friday 3 July 2015

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

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


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.