Come Away With Me: Beach musings.

A photo posted by Michelle Roger (@michelle_roger) on Dec 30, 2015 at 2:36am PST

[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 clacking 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?)

A photo posted by Michelle Roger (@michelle_roger) on Dec 28, 2015 at 1:03am PST

[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.

A photo posted by Michelle Roger (@michelle_roger) on Dec 27, 2015 at 1:07am PST

[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.

Michelle

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.

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: 

UPDATE

This story has been updated to include comment from disability advocates and to reflect BuzzFeed’s editorial standards for reporting on disability. Jan. 30, 2016, at 8:25 a.m.

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. 

Michelle

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.

Michelle

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)

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

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

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

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

Hear Us.

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

  

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

Without your health, you have nothing.

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

Without your health, you have nothing.

It leaps from the screen and stops me still.

Without your health, you have nothing.

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


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

Without your health you have nothing.

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

I read it again. And feel my anger rise.

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


And now?


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


Is my life to this point a collection of nothingness?


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

Without your health you have nothing.

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

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


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


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


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

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


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


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


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


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


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


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


Such a belief does a disservice to us all.


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


I don't live in nothingness.


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


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


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


I have always had my everything.



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

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

Movember 2015: John's story.

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

John is also raising funds for Movember. 

You can donate here.

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

*****

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


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

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

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

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

'A' biopsy was actually 24 samples.

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

It was now March 2010.

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

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

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

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

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

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

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

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

John.

John is raising funds for Movember. 

You can donate here.

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

For more information on prostate cancer check out: 

 

Movember
The Prostate Cancer Foundation of Australia.

Cancer Council of Australia

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

This one's for you.

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

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

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

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

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

Reading.

Breathing.

Sitting.

Lying.

Here.

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

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

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

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

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

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

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

These words are for you.

Michelle

'Cause I only have one second, this minute today

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

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

And say I love I like and breathe in now

And say I love I live and breathe in now 

Same Shit Different Day: Snippets of a Chronic Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life threads through it.

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

In a scene from Frida:

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

Still love that line.

Same shit. Different Day.

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

Same weirdness. Different day.

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

It’s time to collect my pee again.

Michelle

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

(Sign to the Phantom Accessible Toilet.)

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

“Are you ready?”

“Not yet. Sorry.”

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

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

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

The other part of the hospital.

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

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

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

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

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

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

I unlocked the door and waited.

And waited.

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

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

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

A hospital.

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

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

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

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

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

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

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

And there was.

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

Totally accessible.

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

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

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

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

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

It's not that hard.

Michelle

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

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

Hiding in Plain Sight.

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

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

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

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

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

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

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

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

And still no one notices.

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

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

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

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

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

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

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

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

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

Michelle

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

My nerves have gone to pieces

My hair is turning gray

All I do is drink black coffee

Since my man's gone away

Up and Dressed

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

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

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

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

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

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

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

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

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

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

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

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

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

Michelle

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

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