Thursday, 23 June 2016


[Image: A woman, me, sits before a mirror with her merle Great Dane, and constant companion, Freyja. She's wearing grey and blue pjs and the picture is muted and dark. Her pale and tired reflection looks back, The mirror, like most of the house has Great Dane slobber all over.]

I can hear the television from the other room. The rhythm of the speech declares it sport in some form, though the content of the comments is lost in a melange of muffled sound. The world continues on oblivious to my presence on this side of the white MDF door. That this cheap and poorly fitted paper thin block could cut me off, rubs. Not that I can remedy the situation.

I lie supine, bound with invisible straps. Words fail as mind and mouth refuse to communicate. What simple ideas and words coalesce in my brain, unable to reach their destination. I am reduced to the most basic of function.

I don’t know where I am now. I try and pull myself together but the exhaustion foils my attempts. There are points where the unrelenting nature of illness catches up. Knocks you down and cages.

I’m coming out the otherside but the pull of the cage is strong. I worry that I’ll lose my footing and slip back. My windows of semi-functioning are small. Some days so small that simply trying to work out how to access the series I want to watch while lying on the couch is beyond me. Some days I get there. The programs indexed but I can’t recall what it was I wanted to watch. I end up overwhelmed by choice, too much data for my mind to process. So I close it down and watch the midday trash TV on whatever channel happens to be on.

The last three months are vague. Someone snuck into my brain and ran their thumb pad over the ink before it dried. A large smeared mess left in its place. I can’t recall what I’ve forgotten but I know I’ve forgotten things. Important things and small things. That knowledge I have, but the specifics. What was it I was supposed to do? Who was I supposed to call or email? Did I make promises to do things. Most certainly. I do that all the time. But what was it I promised to do? And for who? My brain is a mess. My cognition slowed and frequently disorganised. Trying to carry through a thought to completion beyond me more days than not. I feel like I should apologize, but to who? About what? I’m not sure but the feeling is there, pressing hard as I lie in bed at night. Reminding me that I’m messing up. But how do you remedy a situation that you no longer recall?

I have ideas. But they are gone as soon as they start to become clear. I can see them for a split second. And then…nothing. Just a vague impression that lets me know I did indeed have a thought, a plan, a something. Just enough to tantalize and frustrate. I was sharp once. I know that. But my confidence has taken a battering of late. The chunks of time, of events, of conversations that are missing add to my anxiety. I am an unsure about things that would never bother me before. Simple things and big. Am I saying the right thing? Doing the right thing? I feel stalled by a brain that has gone on strike.

So I have avoided my lap top. My emails continue to pile. I still find it hard to read and hard to respond. I’ve lost track between one paragraph and the next. But a paragraph is better than it was. It’s getting better but it’s excruciatingly slow. Nails on a chalkboard seemingly drawn out for an eternity.

It’s getting better.
It’s getting better.
It’s getting better.
If I say it enough it’ll become truth.

I’m trying to be kind to myself. I’m trying to embrace the tiny windows. To live larger by living smaller. Simple, short and sharp. Focus on the joy part and embrace every second of it.

I sit with my chickens and play with my dog. I get dressed and I take silly photos. I’ve started back on Facebook, but I’m limiting my time. I bug my husband to go to the local lake and roll around through the park lands. I have the odd coffee out and just try and breathe.

I’ve started back with small exercises. I made pizza and sweet scrolls. I potted a plant. I rolled to the cow paddocks on an icy day and watched the pelicans and water foul swim on the dam. I stood at a council meeting and spoke my mind. A small glimpse of the old me. Exhausting and exhilarating. I wrote this blog post over weeks. A snippet here and a snippet there. But I wrote it.

Life is smaller, but the parts are more healing. I am resigned to patience. I will wait. My brain will come back. I will step back into my life.

I’m on extended sick leave.

For now. But not forever.


[Image: A woman sits cuddling a large orange chicken on a cold and dull Winter's day. She's pretending to give the chicken a kiss. The chicken, Sharona, is plotting the woman's death.]

*Thanks to Stefani, from Kind of broken: Lifestyles of the Young, Sick and Fabulous, whose own efforts prompted me to try and get this post into something resembling coherence. We're both going to get there. Of that I am sure.

Not sure why this didn't come up on the post. But hey. Matters little in the big scheme of things. But I've been listening to a lot of The Jezebels in my down time. I love this song, but there's something about the film clip in particular that I really love and feels invigorating.

Wednesday, 4 May 2016


[Image: a woman kneels on brown carpet, forehead touching the ground in the yoga pose known as Child's Pose or Balasana which helps her gastric pain. Light shines from the window behind her, reaching a chair covered in a bright red throw rug.]

Eight minutes and six seconds. That's when my exhausted body said hell no. I lay on my yoga mat listening to Adriene, from Yoga with Adriene instructing me to massage my feet. A panting blob lying on green rubber matting not even capable of a proper savasana. Autumn sun was a lovely idea. The birds were chirping, the chooks scratching away in their yard. Even the workmen that have been at my neighbours for weeks were silent. Freyja came over and nuzzled my pasty face before deciding to take a poo less than a metre from my head.

And in that moment, the last couple of months were summed up neatly. Short lived joy followed by a large foetid mustard-coloured dog nard from which your slow and exhausted body struggles to escape.

I'm not quite sure what happened. The usual illness malarky was muddling along, when suddenly it all went pear-shaped eventually ending in a long overdue ED visit and a protracted recovery phase that still feels in its infancy.

I've tried repeatedly to take a deep breath and step out into the world only to be hit hard with payback. I've dressed up and gone to a cafe only to be forced to watch Mr Grumpy eat while I swallowed down vomit and ate antiemetics. Sit out with my chooks and recovery sleep is measured in hours. Yesterday I went out for 20 minutes, saw some cows in the paddocks next to our housing estate and today I woke up struggling to breathe or lift my head from the pillow.

Dip my toe in the world. Tell myself I can push through. And my saggy, stretch-marked, arse is where I keep on landing. Payback comes in metric fuck tonnes these days. And it can no longer be ignored. My droll husband tells me at least I look sick now, but even he finding little in that line amusing.

I have a collection of vintage cutlery. In amongst it all I have several tiny silver, salt and mustard spoons. Smaller than my little finger. My spoons have been in short supply of late and those I do have are reminiscent of those tiny salt and mustard spoons. So I've hermited. Built myself a pillow fort and tried to simply ride it out. When existing is hard the rest of the world has to be put aside to focus on trying to heal. And of late it's been pretty bloody hard.

I've tried to put pen to paper or fingers to keyboard and realised there was nothing. My brain too flummoxed to conjure up a coherent thought let alone hold that thought, coordinate fingers and get it onto a screen or piece of A4. Reading has equally been beyond me. And I have been bereft. Two of my greatest pleasures gone and my world far more claustrophobic.

I have known that I have cognitive issues for some time, more than just regular old brainfog. I had a brainSPECT scan last year that confirmed moderate impairment in the blood flow to my left temporal lobe, and mild to my right. I haven't fully processed what it all means, but it's effects are clear at present. My reserves are piss poor and now documented in a series of rainbow coloured scans. Add in worsening health and it would seem those reserves have been wiped out.

To respond to emails or messages is difficult in the extreme. Primarily because even reading them is exhausting. It's a weird place to be. That which was once my strength is muted. I have to believe it'll come back when this patch has passed. Losing my words isn't an option I want to contemplate.

This is the most I have written in over two months. It's been a struggle. But it's better than the usual staring at the screen, perplexed and frustrated, impotent hands poised over the keyboard, that has marked the last couple of months. So I'm taking it as a cautious sign.

The pain in my arms and wrists and the exhaustion that have come from these few words are worth it just to see them sitting there before me. They aren't perfect. But they exist. A small piece of me out there in the world again.


I wanted to say thank you to everyone who has sent emails and messages of support and concern. I haven't been able to respond and sometimes even read bar the first line or two, but those messages are much appreciated. I'm not really on social media at the moment except for a bit of Instagram where deep cogitations are not really required. I'm not sure when I'll get back on properly. I need to be ruthless in my energy usage to try and get on top of this again.

"Come on my friend
Drink to good times
Golden wishes
To your health and mine."
(PJ Harvey, You Come Through. 2004)

Tuesday, 16 February 2016

Chronic crafting: Walking stick holder.

[Image: A black wheelchair sits on green grass. It has a red patterned seat cushion and a bright red walking stick holder on the side.]

I spend a lot of time swearing at my walking stick. When I blame it for my lack of coordination and it's tendency to throw itself on the floor should I dare to lean it against a wall or desk. But most frequently my potty mouth is reserved for when I am in my wheelchair, think I have it hooked on the foot rest, only to have it dive sideways, under the foot rest, or it's classic drop and get stuck in a tram track. The slightest bump or if I try to think and breathe, and it's gone.

Times I may have sworn at my walking stick include, but aren't limited to:

At a medical appointment where first meeting a doctor.
In the poorly insulated disabled loo where I'd just managed to make my unsteady way to the loo only to hear a loud THWACK as it hits the sticky tiles.
In the local clothes store when it became hooked on a long sleeved top and was wrenched from my side before my muscles can work out how to react.
In front of my inlaws and, small children.

Such swearing is apparently unseemly, and I fear I may be adding to the angry-disabled-with-a-huge-chip-on-her-shoulder-shouldn't-she-be-all-smiley-and-inspirational, narrative.

So in an endeavour to not let the disabled side down with my surly sweary attitude and because I am completely over it falling off my wheelchair I got my craft on to find a solution. Though in my own defence swearing a lot is apparently a sign of intelligence and trustworthiness, so here's my:

Michelle's Easy Stop My F**kin' Walking Stick Falling Off My Damn Wheelchair Tutorial 

You'll need:
  • 1 PVC pipe straight join
  • 1 PVC pipe cap
  • 2 metal hose clamps
  • Paint whatever you have lying around. I used Haymes Low Sheen Exterior in Carnation. But if you don't have any, a can of spray paint would make life easier. Just make sure it's a hardy exterior paint if you want it to last.
  • Paintbrush
  • Flat head screw driver

Step 1.

Head to your local Bunnings or other hardware store. Get lost in the million isles. Become overwhelmed with project ideas. Make a detour to the plant nursery and buy some more coriander that will proceed to go to seed and never grow properly despite your pleas and tears. Finally head to the right isle after Mr Grumpy starts to develop his FFS face.

Step 2. 

Have your walking stick with you so that you can make sure you are getting the right size parts. Look up at the amazing array of plumbing accessories. Start to feel slightly nauseous and grey because you forgot that looking up is not your friend, and hand it over to Mr Grumpy to grab pieces. Make way out of Bunnings with necessary craft items, doomed coriander, an impulse buy of five pots of instant garden colour and, yet another bucket.

Step 3. 

If you can, buy a can of exterior spray paint. This would make life so much easier. If like me you think, "Hmm I have some left over paint. That'll do." still get the spray paint. Otherwise you will end up swearing at the paint that wont go as smooth as you imagined as you went with the cheapo brush as it was "only a small project". Apply a few layers over the PVC pipe end and PVC pipe straight join leaving time to dry in between each layer. Don't get impatient and cock it up with finger prints or drop the piece that's all dry except for that one edge which just happens to be the edge that you knock against your good dress. Additional tip: Don't be lulled into a false sense of security because it's just a small quick job so you can't be bothered with the effort of changing into old clothes. Change. You/I will always drop something.

Step 4:
Attach each piece to the side of the foot rest on your preferred side. The PVC pipe end piece goes lowest to stop your walking stick falling through. The metal hose clamps come completely apart so you can wrap them around the pipe piece and wheelchair tubing easily. A second pair of hands or much swearing will help to hold the piece in place as you tighten the hose clamps to secure the PVC pipe parts in place.

A tail may extend from the rings. This is sure to catch on everything so remove if possible. My arms of patheticness are not up to the task so I am waiting on Mr Grumpy to fix.

Leave both hose rings a little loose. Place your walking stick in the holes to help line up both parts and to find an angle that works best for you. When you're happy with the angle and line, tighten up the hose rings to stop movement.

And there you have it. No more innocent ears being sullied by my swearing. At least not for this reason. Oh and obligatory Freyja photo as she's awesome, puts up with my swearing and loves the camera.


Walk/Roll this way depending on the day.

Wednesday, 10 February 2016

Compression Stocking Review: Sigvaris 712N Allure 20-30 mmHg Patterned Thigh High Compression Stockings with Lace Silicone Border in Black.

[Image: a woman from the waist down wearing a floral skirt, compression stockings and black boots, in front of her messy bedroom with clothes and shoes strewn on the floor.]

I should add this is not a sponsored post (mind you I wouldn't knock one of those back. It would be nice to be able to pay for my own coffee just once). Nor is it an exhaustive list of brands and options. Instead, it is based on my personal experience, and for those considering compression stockings either for the first time, or those tired of the regular range of stockings and looking for a bit of spice in their compression wear. Your treating doctor should be able to advise you as to whether compression stockings may be helpful for the management of your form of Dysautonomia and the strength and type of stockings you may require.

Regular readers will know of my passion for finding fashionable compressions stockings. Frankly if I have to be sick I'll be damned if I can't be fashionable. I spend way too much time online looking at compression stockings. I search for anything that is remotely patterned or coloured outside of the traditional white, beige, black or navy blue. In the mid to high range compression (20mmHg +), it can be hard to find many options. Add in that cost of more fashionable versions can be prohibitive to many, and it can be hard to find practical and fashionable options.

I love my Juzo Soft compression stockings and have been wearing them for a number of years now. I have a range of colours and a fabulous tie-dyed pair which I wear on a daily basis (I may need a Juzo Soft intervention). But while they are one of the few brands to offer a broader colour range and tie-dye options, and sheer options, they do not offer any sheer pattern options. I have tried (see review here) and quite like the options offered by Rejuvahealth's fashion range but found that my legs were too long for the brand. After some searching I discovered that Swiss company Sigvaris, offer a small range of sheer patterned stockings. last year, with a function coming up and running out of time I decided to bite the bullet and try the

Sigvaris 712N Allure Sheer Patterned Compression Stockings

(Source: Sigvaris Allure Sheer Patterned in Graphite)

They come in two colour options: Black and Graphite.
Two Strengths: 15-20 mmHg and 20-30 mmHg
Two Heights: Thigh High and Full Pantyhose.

I chose the 20-30mmHg Closed Toe Sheer Patterned Thigh High Compression Stockings with Lace Silicone Border in Black.

They sit around the $92US mark at most online retail outlets (eg Brightlife Direct and

(The reinforced heel is darker but does not extend to a point where it becomes unsightly. As you can see in my ruby bow shoes above they aren't visible.)

I have now worn these stockings on a number of occasions and they have become my default pair for going out of an evening. As such they are well and truly road tested. I used to love my fishnets back before I developed Dysautonomia and these are a nice medical grade compromise.

(Obligatory Freyja shot)

They are a delicate pair of stockings. Even more so than the Rejuvahealth versions I reviewed last year. I was conscious of every rough patch of skin on my hands and spiky edge of fingernail when putting them on. Having said that I am yet to snag them yet (stumbles around touching wood).

(The band is pretty and there is a relatively smooth transition to the stocking itself.)

Each brand differs slightly in the band at the top of a thigh high stocking. The Sigvaris Allure had a reasonably smooth transition and is lighter than the Juzo Soft and Allegro products I've tried. It helps to keep the overall delicate feel of the stocking itself.

(A comparison of the silicone border of the Sigvaris (left) which is fine lines and Rejuvahealth (Right) which are dots similar to the Juzo Soft. You can also see the length difference in the pairs. Sigvaris are great length for long legs.)

(The toe is darker but transitions well. My feet are small for my height so they didn't stretch out the foot a lot so it was noticeably darker in the lower portion of the foot. 
It's a problem I've found with every brand I've tried.)

(Obligatory Freyja shot:
Dress is from Lazybones,
Shoes are Rivers,
Necklace and bracelet I've had for years.)

The Verdict:

I like them and continue to wear them though they do have some issues:

They have not maintained their original compression and are reasonably easy to get on now. They still provide more compression than say a 15-20mmHg pair but are noticeably laxer. Given their price point and that I have only worn them on special occasions, probably 8-10times at the most and only a few hours each time, I would have expected that they would have maintained their compression level.

The silicon top feels more precarious than initially, although they are yet to fall down. I haven't had a skin reaction to the silicone lines so far (stumbles around touching wood once more). I mention this as off and on I have had a reaction to the Juzo Soft silicone dots. 

After going over both stockings with a fine tooth comb I only found two tiny pulls. As such their delicate feel belies their durability. I live with a very touchy feely Great Dane and am unsteady and bump into things and fall on a regular basis when I'm not using my wheelchair, so they have been through a few trials.

The black dots are starting to fray a little but not worryingly so.

They have been washed multiple times in a lingerie bag on a cold setting in my washing machine using a sensitive washing powder.

They are a decent length if you have long legs. They are of a length comparable with Juzo Softs, and much longer than both Rejuvahealth and Allegro brands,

As you can see from the chart below they do have a short and long option.

Overall, I would buy them again, but only for use as a special occasion compression stocking.

Jobst do a similar version, the Jobst UltraSheer Pattern 20-30mmHg Thigh High Compression Stockings with Silicone Dot Boarder which comes in two colour options Black and Espresso. They fall in roughly the same price bracket as the Sigvaris. I haven't tried these so can't comment on how well they work or stand up over time.

(Source: Jobst UltraSheer Pattern in black.)


For more on compression wear you can check out:

Compressions Stockings from Beige to Brilliant Guide.

Rejuvahealth Review.

Allegro, Microfibre 20-30mmHg Black Thigh High Compression Stocking Review

LympheDiva Gauntlet Review.

Fashion blogging is not for the faint of heart

These reviews are always exhausting with the putting on and off of compression stockings and the up and down, getting dressed fighting off clingy Great Danes and warm Summer weather. But it's done! Now to collapse on the couch.

I've been listening to Sarah Blasko all day and I always have a wry laugh when I hear the lyrics "we wont run" as I haven't run in a looooong time.

We won't run, we can fight

All that keeps us up at night
There is far to go now
Let's not waste a minute more

Wednesday, 3 February 2016

Come Away With Me: Beach musings.

[Image: A woman walks barefoot along the beach with her walking stick. Her head is down and she is wearing a large blue hat, pink floral dress and green cardigan.]

The parade of children on new bikes begins. Pink is a favourite. Closely followed by silver. A line of training wheels clack
ing along the slightly melted bitumen. The more experienced zoom past their brothers and sisters to do an effortless 180 where Beachcomber meets Meridian. Zooming back again to see if their younger kin had worked out the wobbling combination of trepidation and exhilaration. The populace, both holiday fly-ins and locals, walk by trailing towels and dogs. Brown and black, big and small, hairy and sleek. The more exuberant leading their walk-enablers. The rest walking contentedly next to their owners. I look for the rotund charcoal staffy we met on Christmas day. His body wriggling with excitement as he tried to squeeze under the gate to meet our very confused Great Dane. His gyrations made the Christmas bell on his collar jingle and gold tinsel glitter in the sun. And brought a smile to our faces. Boxing day has arrived and so has the procession past the window.

I watch them file past slowly, backed by azure skies and the green-grey tea tree and bottle brush. Their languid pace courtesy of the magic that is holiday time and the weight of Christmas overindulgence. My feet hang over the arm of the soft blue recliner. To tired to bother with the mechanism to raise the footrest. The blinds clatter in the breeze but I hardly notice. Closed eyes and muscles turned to putty over proceeding days my main focus. The sea breeze blows through the open door and flows through the house carrying salty notes and the sound of the waves.

We’re back at the beach. A friend has loaned us his house again. We were here for Christmas last year. For much needed respite and healing after a really rough year. And now we're back for a booster shot. The beach less than a 100m from the front gate means even a quick trip to watch the waves or drink a glass of wine as the full moon rises and the sun sets, is easy. We've transitioned smoothly from suburbia to beach life as if this has always been our norm.

Vera has traversed the path from beach house to dunes numerous times. Both packhorse and mode of transport. The crunch as she rolls testament to her time on the foreshore. She and I have bounced down steps and up to sink in deep soft sand. Husband and offspring content to drag and push at need. Or when it was all to hard I was carried or supported with a now oxidised and unfoldable Francesca. She too carries a new tone in her black tubing as we walk slowly down the driveway. A rush of sand and the tinkle of small bits of shell and larger granules with every movement. Lift, crunch and rustle. The sands of time falling in step with my dragging feet. Slowed and liquid the time of the sand and sea. Wild salt on southern winds preserving time for later need.

There's an ease in my heart that I haven't felt in a long while. Something about the salty sea air draws the ache from my soul. Pulls it like salt does the bitter water from cut eggplant. Draws the pain and fear, the exhaustion and melancholy. The, enough. Pulls it slow and sure as I am hypnotised into quiescence. The call of the gull overhead, or twitter of the blue headed wrens flitting on the grass just outside the window, whisper soothing words. The wind carries the bitterness from my skin. And I am refreshed once more.

Beach time is thinking time. It's easy to process the world while I'm there. Clarity is mine in a way it hasn't been for a lot of the proceeding year.

And now we are home.

Three articles have appeared in my timeline since I returned. And each seem to have arrived at the right time. They talk of ease, a move from well to powerful and authenticity. 

Ease is something I rediscovered on the sands. It’s something that I have on and off though I've never really named it before. Yet name aside I have been striving for it everyday. My body continues to be obstreperous. I sit here today sporting a hand brace after a fall. Everything I eat hurts and makes me want to vomit. The bone pain in my legs is back. And my bowels have closed for business. The list continues. And yet I'm at ease. Mentally, emotionally, and spiritually I am at ease. For the first time in a long time.

“…when I repeat the phrase, ‘may I live with ease’ during meditation, to me it also has another meaning – may I be at ease with my life, regardless of the circumstances. May I be at ease with the inevitable ups and downs of my existence, instead of constantly struggling against ‘what is’. This is not passive, or resigned – in fact, being at ease with our lives involves a very active engagement with reality, as opposed to clinging onto some idealised fantasy of how life should be…” (Anja Tanhane, Holiday Favourites - Living with Ease)

This is how I've been trying to live. My trek to the beach involved being wheeled from the house, down the road to the top of the dunes. My legs too weak to make the distance and my body unable to tolerate the expenditure of energy or time upright. I was unceremoniously carried up and down dunes and over soft sand. The only person on the beach with walking stick and wheelchair. Held in waves by my husband so I could feel the pull of the water and taste the spray on my lips. I could do nothing alone. Independence long gone. Such forays were curtailed by my recalcitrant body. I was nauseous and exhausted. In pain and unsteady. But the ease persisted. The weight of the last few months on it’s way out to the cold reaches of Bass Straight. Drawn as my body tumbled in the waves and taken by the undertow, to menace me no more.

O'Dwyer talks about ageing powerfully rather than well or gracefully. Her points regard choice and control, and much can be transferred to a life with chronic illness. 

"....there are no guarantees in life. Ageing is a crapshoot...But you can load the dice in your favour." (Dr Siobhan O'Dwyer, How to age powerfully - and what that means?)

[Image: A woman in red and white bathers and a large blue hat lies on a blue and white floral throw on a beach. Her trusty wheelchair sits behind her a clear blue sky overhead.]

I may be ill. But I can control many aspects of my life through the choices I make. We can have health and life in the context of illness. I can choose to be powerful by looking at all aspects of my life. I have gone back to Pilates. I can do very minimal exercises and only when lying down. My muscles refuse to coordinate and I have trouble initiating movements. Much of my energy expenditure is in trying to rope them in to complete a movement. But I'm there and I'm
doing it all the same. I'm trying to be better with my diet. Following the guidelines from my dietician to manage my defunct digestive system. I am making sure I do the little things that bring me joy, like chatting to my chickens or preparing my succulent pups for planting. I am back to scheduling mindfulness and simple yoga. There is a powerfulness in that. I will never have health as most know it, but I can maximise what I do have. 

I found my power again at the beach. I managed the basics of my yoga routine on a towel in the front room of the house. I watched the families walking buy and the yukkas rattling in the wind while I melted down into my savasana. My gaze soft and my breaths long and deep. The clean smell of salt on the wind through the flyscreens. Swirling overhead dispensing calm and clarity. I sat on the front porch and completed my mindfulness exercises. And I allowed myself to breath in my surrounds, while sipping on a forbidden wine or two, free of self-recriminations.

“…Knowing what those fears are, being vulnerable and facing them head on with your authenticity, will enable you to stand up and go in the direction that you desire…” (Helen Edwards, Why Authenticity is Vital to Your Happiness)

Being authentic doesn't please everyone and it shouldn't. I know some see me as a little eccentric. But there is something freeing in simply being yourself. There were stares at the beach. Our daily familial procession of wheelchairs and lifting, and unenthused Great Dane. As I walked on the soft sand at the waters edge cane at hand I received the double takes and whispers. Good or bad I don’t know. I was too busy having fun. When I wore bright red bathers with my pasty white body I didn't care. When I received a comment on Instagram “You look so stunning with a cane” I did a double take. What does that mean? That I shouldn't? That it's a surprise that someone may look okay and be disabled. That I don’t look disabled and ill? That in being myself I don’t fit in the established ‘look of disability/illness’ criteria? It was strange to think that my authentic self was somehow a surprise. Being ill has stripped away a lot of the shoulds. I don’t have time for that malarky. I do have time for me. And in making that time I have more to give. I’ll wear a mini in my wheelchair, I’ll sport blue hair and wear red high heels. I’ll watch scifi and horror movies and run far from rom coms. I’ll belt out Nina Simone's I want a little Sugar in my Bowl, and sing Prodigy’s Firestarter at the top of my lungs. I’ll put a disco ball in my bright red chook house and have a FUBAR sign on my desk. I’ll be “one of those lefty feminists” as I was called last year. I’ll simply be me.

[Image: A wheelchair with an eldest son's legs sits on the beach at sunset. The sand is golden and a blue and white floral throw sits in front of the chair.]

I’ll embrace me and my ease. I’ll be powerful and authentic. I’ll sit on an empty beach at sunset and watch the light fade and the moon rise with a glass of cheap sav blanc in a squat glass tumbler from a Belgian airline. I’ll collect more shells and pale drift wood. I’ll watch the sand swirl in the bottom of the glass and breathe it all in. I’ll breathe in me for the first time in a long time. And I’ll feel the lightness of being that comes from time away and the magic of sand, sea and wind.


Not exactly a beach song, but Norah's languid style feels perfect. My family call her Boring Jones and always paid me out for listening to her. When the boys were little I if they saw me running a bath and putting my candles up, clear indicator I was about to shut the door and relax for an hour, I'd get the chorus of "Are you going to listen to Boring Jones, Mum?" followed by great guffaws of laughter because they thought they were so so funny.

Friday, 29 January 2016

De Ja Vu: A man stands from his wheelchair and Buzzfeed decides to perpetuate abelism.

[Image: woman standing next to a wheelchair and holding walking stick. Same image is repeated in four coloured squares]

This is a reworking of an old post as this issue comes up again and again. De ja vu from Buzzfeed this time. Ignorant abelist crap and objectification of a person with disability as an object of mockery because they stood from their wheelchair. 

I'm tired. Tired of having the same conversation, about the same issues. Year after year after year. Back when I started this blog in 2009 I was discussing the hurtful comments challenging the validity, or existence, of illness. I have banged on about the whole myth of the look of illness and challenged perceptions about what constitutes disability. I have written so many posts on the topic that I couldn't even pick one to link up. And still, nearly 7 years after I first pushed publish, posts like today's ableist trash from Buzzfeed A man stood up out of his wheelchair after a Roger Federer Miracle shot  (although they are not alone as other outlets such as The Daily Mail Australia also thought it was hilarious), 
are doing the rounds of the Internet on a regular basis. And people continue to find them funny.

A man in a wheelchair stood up when Roger Federer hit a great shot at the Australian Open, and he became the subject of widespread mockery. A man went out to an event using a wheelchair for reasons only known to him. He enjoyed his evening and dared to show his excitement. And people decided he was fair game for mockery. Because disabled people, especially those who don't meet false expectations of disability, are by their very existence, fodder for jokes.

When I write an article many readers tend to relate to the issues I discuss. They have had the same experiences and the same reactions: hurt, anger, frustration, an overwhelming desire to resort to violence. But in many ways this is preaching to the converted. Those who read predominantly share the same views on these topics. But in the wider community it seems that little has changed. 

This "miracle" and "cure" joke, is doing the rounds, again. Because an ignorant and ableist journalist, although I use that term loosely, fails to understand that many wheelchair users like myself, aren't paralysed. Not only that, he trolled through social media to find gifs and tweets from fellow ignorant ableist citizens to share and enhance the hilarity. And what disappoints me even more, a Buzzfeed editor gave it a stamp of approval and it was published. 

The journalist and the posters, have not taken the time to think about the message such an article sends to friends and family who are living with illnesses that don't meet the limited ideal portrayed in the media. It also says a lot about how society, including a major internet site that claims to care about various isms, continues to view disability and illness in this day and age.

It says your illness and your experience is a joke. When they laugh at such an image they are essentially saying you, your illness, your challenges, pain etc are meaningless. When those who use a wheelchair but can still mobilise independently over short distances see such an article it is hard not to take offence. We know the mental and emotional challenge it can take to simple accept the need for a wheelchair. That we have internalised abelism that we must fight every day. We know that a wheelchair means difference at an age where most are simply out living life, starting careers, studying, having children or travelling. We know that every time we head out into the world someone will find our life a joke. Or, if you are unlucky enough to be this man, you and your situation, become a beacon for global for mockery.

I can say we shouldn't care. 

I can say we should simply ignore this article and others like it.

But sometimes no matter how stoic we are, such attitudes cut deep. 

And frankly, why the hell should we have to put up with mockery and disrespect on top of having to live with disability or debilitating illness?

Those who have not personally experienced serious or prolonged illness; who have never known the challenges of disability or seen how they affect a loved one, seem to still find the whole experience as nothing more than fodder for laughter.

What is lacking in our culture that many feel they have the right to mock, judge, or police others, for circumstances they don't bother to understand? When did compassion and minding your own damn business, get replaced with picking others apart for sport?

The idea that the only viable illness is one that lends itself to clear external markers, such as loss of hair or tubes and bandages, is so incredibly incorrect, as to make it laughable, especially given that figures for so called invisible illnesses are as high as 1 in 2 in some countries. The idea that disability is only seen in the use of a wheelchair, something unfortunately perpetuated by the most commonly used symbol for disability found on blue and white stickers worldwide, excludes millions of people in Australia alone (currently estimates are that approximately 20% of the population are living with some form of disability, only a small percentage of those are permanently in wheelchairs). 

The idea that only those with paralysis use wheelchairs is equally damaging to a large percentage of users who, like myself, can walk very short distances but are frequently unable to stand or walk for any substantial distance, or depending on the day, unable even to walk one or two steps. 

Without my wheelchair I would rarely leave my house. Without my wheelchair I wouldn't shop. I'd never go to a gallery or a market. Or even attend many medical appointments. I have even been known to use my limited energy to push myself up from my wheelchair to grab a product from a higher shelf. I could very easily have been the man in that article.

If those who laughed at the article, or mocked others in the community for standing from their wheelchair, took the time to speak to the person in question they may find that they are recovering from surgery or illness or have Dysautonomia, Myotonia, Multiple Sclerosis, cancer, lung disease, heart failure, Ehlers Danlos Syndrome, Arthritis, Chronic Regional Pain Syndrome, or a host of other disabling conditions. 

But should these people have to explain themselves to the mockers? 

Should they have to lay bare their medical history to receive a basic level of respect?

Should we all wear coloured vests or carry neon signs stating our sick credentials to be treated with dignity?

This and other instances of the same"joke" (here, here), that continues to make the rounds on the Internet, is nothing short of insulting and reflects a basic lack of empathy and character upon those who both continue to share it, and those who laugh or say nothing.

I am tired of having to justify my existence to the wider community. I am tired of friends having to justify the use of mobility aides such as wheelchairs. I am not here to educate every idiot who finds this crap funny. I have enough on my plate to deal with on a day-to-day level. I don't need the added burden of playing the role of teacher every single day, day-after-day, year-after-year, for people who don't bother to think of how their attitudes affect those of us who have been in that man's position, or that man himself. Or who don't realise that they, or someone they love, may one day develop an illness or acquire an injury that will put them in such a position.

This is not about a lack of sense of humour, as is often the accusation made when people like myself question such jokes. Many of us in the chronic illness and disability community have well developed senses of humour. It is what helps make our lives bearable. We find the funny in the most unfunny of experiences. But we are using our own experiences, we mock ourselves not other people. We tread the hard path, the pain, the fear, the tears and the doubt, and we have the right to use our experiences. Others do not.

It is me who cannot stand, who collapses on the floor, who vomits up food on a regular basis, who cannot always hold a glass, and who cries into my pillow from the often unrelenting pain in my body. It is me who is often unable to walk from my bed to my bathroom and has undergone numerous painful and scary medical tests. And it is me who needs to use a wheelchair to access the world and doesn't meet the simplistic perceptions of others. 

I have paid my dues and can laugh at my experiences. But when able-bodied people post articles like this one, when they mock, or make derisive comments, they are misappropriating and minimising my experience and the experience of many others, for a cheap laugh.

It is nothing short of insulting and offensive.

Just as we shouldn't put up with sexist, racist, or homophobic memes, we shouldn't put up with this ableist crap either.

I am tired of having to explain myself. But I am more tired of simply sitting back and putting up with discrimination sugar-coated as humour.

If you post, share, or laugh at memes such as this, you are an arsehole. If you see it and say nothing, you are giving your tacit approval to that attitude. And I for one am going to call you on it.

Also check out more on this from:
The #AusOpen Miracle, and
A man stood out of his wheelchair after a Roger Federer Miracle Shot.

Update: Buzzfeed have decided to try and save the piece by adding five tweets from disability advocates. A piss poor attempt to placate the disability community and completely missing the point yet again. This doesn't alter the fact that they saw fit to post the piece in the first place and continue to see it as an appropriate piece. They even add a note at the bottom to say: 

This story has been updated to include comment from disability advocates and to reflect BuzzFeed’s editorial standards for reporting on disability

If this meets their editorial standards for reporting on disability I am truly disgusted. The piece needs to be removed, a no excuse apology offered, and consultation with the disability community undertaken immediately. This is more than simply an error of judgement. The piece was written, editor approved, and following justifiable outrage from the disability community, this is the response they chose.

Oh and it's not that we're "Not Happy" as the new improved title suggests. We're angry that a major media outlet would think that this shit is in any way appropriate. We're angry that they fail to see that this is the kind of bullshit that perpetuates stereotypes and cause harm. And if they'd bothered to read even one of the many blog posts or comments by disabled people they'd actually understand exactly why we have reacted in the manner that we have and why their non-apology, no effort, response is an infantalising pat on our heads. 


Friday, 15 January 2016

Let's go in the waves.

[Image: Man holding a woman with a walking stick up in the waves at the beach]

A short chronic love story.

"Let's go in the waves" she said.
"It'll be fun" she said.
She forgot about the strong undertow and the big sign out front warning of strong currents, rips, and sand bars.
She also forgot about her neuromuscular issues, and weakness, and that pesky problem she has with being upright.
She told herself about the compression from the water.
He laughed and held her up as the waves and undertow tried to take her out.
She lost control of her walking stick and her legs kept collapsing.
But she laughed and he laughed.
Great squeals of laughter.
He picked her up and held her tight as the waves churned and roared around her legs.
Then he carried her back up the beach, her arms slipping again and again from his neck.
She flopped on the blue and white throw, not to move again for some time.
He passed her the water bottle and reminded her to drink.
She breathed in and felt her body ache and tremble with exhaustion.
Everything hurt and she wanted to vomit.
But damn she felt better than she had in all the past year.


If you love me with all your heart
If you love me, I'll make you a star in my universe.
(Angus and Julia Stone, For You)

Tuesday, 8 December 2015

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

Monday, 23 November 2015

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 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: 

*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)