Filaments

[Image: A large merle Great Dane, sits on the lap, or perhaps squishes the legs of a woman with dark hair. The woman in a cream cardigan and sitting on a blue and white patterned throw, is cuddling the displeased Great Dane. They are at a beach with big scary waves. They are sitting on sand near a peace of drift wood and a small creek winds it's way out to see in the top right corner.  This is one of my favourite photos of Freyja. She's always been a lap dog and very protective. Though in this case I'm not sure if she was protecting me from others on the beach or seeking protection from the big evil waves.]



I want guarantees. No, scratch that. I need guarantees. I need to know Option A will lead to Outcome B. One hundred percent. No deviations. No messy odds that allow for Outcome C, D and Z to come into play. I am a tantruming two-year-old demanding my due. I want it and I want it now. Rational thought sweeps in and out to be replaced by panic and screams that it's not fair. And it's not. Even when rational me says it's part of life, emotional me is still in the foetal position. The decision's too big. It's all too quick. But still it must be made.

She doesn't care. She sleeps on her brown and tan couch as warm Winter sun streams in through the angled blinds. Blinds that hold a layer of slobber. A layer of oil from nose presses and fur. Light comes through the window whose pane is patterned with overlapping nose prints. The top line of which mark her height as clearly as any notch or biro line on a door frame. No matter how often I clean, her presence is announced from front door to back, in oils, slobber and fur.

Half wrapped in her blanket, legs tucked under pillows she twists awkwardly to look as I emerge from my bedroom. A morning tail wag thumping heavily on the cushion gives rhythm to her excitement. The tangle of limbs uncurl. She flops to the end of the couch in her usual half-stretch half-stand that seems more attributable to an initial emerging from three months hibernation instead of 12 hours over night.

A warm head moves expertly into position. My hand encloses the top and side of her warm head. Eight years of mornings have made the movement automatic. The coffee machine splutters into life and the crack of the container that holds her breakfast leads to the first signs of excitement. Food, her family coming home after an eternity (otherwise known as any period spent outside the front door) and the occasional pounce at the chicken run to watch them squawk and flutter, her main sources of excitement. A rattle of her lead or her desire to let people, other dogs, birds, the crow that likes to sit on the front gutter, or the occasional unidentifiable sound, know that they have entered her domain, the others.

She stops at the door quivering. Bowing, before a stretch elongates her body and she yawn-yelps to calm herself. She waits for me to head through, before a burst of excitement zooms around my right hip and heads to her silver bowl. She's looking great the vet said. Could even lose a kilo or two. Yet the lump of meat is inhaled as if we have starved her for weeks. Suck down the food, quick ablutions and a check that the boundaries are secure, before waiting on the door step to return inside. That's where her family is. Or, more importantly, that's where her couch resides.

Cocooned in the corner of the loungeroom. Soft circular couch. Warm Winter sun. A throne to gaze at both family and the world. Content and unaware.

I want to know we are making the right decision. We had three. One, do nothing, was discarded immediately. The other two are filled with uncertainty that leaves me sleepless and nauseous. The stress of such big, irreversible decisions do not meld well with a chronically ill body. It's all been too quick. Monday just a double check with the vet. Tuesday the bad news. The big bad. The one that left me crying on the phone to the vet, and Mr Grumpy, on the couch, in my bedroom. Wednesday rapid decisions. Friday, tomorrow, surgery.

On Monday when the vet, with her keen eye and calm voice mentioned possibilities, I never entertained it'd be the worst one. It was supposed to be nothing. Benign I was prepared for.  This. This had been locked away in a place where I'd never find it. This was the sucker punch delivered with a calm, sympathetic voice on the other end of the phone. Bad news evident from the first syllable. From the too early phone call. Monday's "it often comes back unclear" replaced by the removal of any doubt and the clarity of the expert eye. "Aggressive," "high grade," "no clear margins," the hole in my stomach growing deeper and wider with each word.

I knew I loved her. I knew but I didn't know how deep it ran. I didn't know how deeply she'd wound her way into my being. I sit watching her sleep and try to catch a glimpse of  the invisible filaments that bind my heart to the smelly, snoring body opposite. They remain elusive to my eye but are crystal clear in the pain that potential loss creates. So big decisions are made.

She's in great health for her age. Well apart from the tumour protruding from her leg. Her heart is strong. She looks great. Apart for the collection of feral cells reproducing at an alarming rate and already threading their way through muscle and tendon. She's in great health, apart from the tumour, though we won't know if it's spread until they scan her abdomen and chest while she's under. She's in great health, if you ignore the tumour that you can't ignore.

It'll give her the best chance. Best chance. Such a pathetic pairing of words. I don't want chance, not even the best one. I want certainty. I want a promise. I want it written in stone. I want to know that when it's all done she'll be back sneaking her head into my hand. That I'll feel the weight of her body pressed against me as I try to hang the washing. That she'll worm her way back into my lap when I sit outside. That she'll still annoy the chickens and and bark at the delivery woman before poking her head between my leg and door frame for a pat and a scratch. That she'll continue to ruin my good clothes with fur and slobber. That she will announce her displeasure at my being out or not getting up early enough, by disembowelling a tissue, or placing items from my handbag outside my bedroom door.

I want to know she'll be okay. I want her to tell me that it's the right decision.

I'm not ready to let those filaments go.

Tomorrow she goes in for surgery and they'll take her right front leg. The leg she holds up to shake hands. The leg she whacks me with when she wants my attention. The leg she touches me with just to make sure I'm still there. Her best chance they tell me. Best maybe. But shit chance, shit option, shitty best chance of all the options. I look at the still growing lump protruding above her ankle, the one that is growing rapidly and now so tender she's not happy even for me to touch. I look at it and know it must be done, even with potential complications, even with the shitty nature that is her best chance. Even if we don't have time to breath between news and decision.

But for today, there'll be cuddles and belly rubs. She'll be my other walking stick as I move around the backyard. She'll give me side-eye when I cuddle one of the chooks, and bark at the workmen across the road. She'll be excited when Mr Grumpy gets home and when the youngest returns after his long trip to the mail box at the end of the driveway. Today I'll pretend and she'll remain oblivious.

Tomorrow we'll trust to the experts. Keep positive thoughts even if at present they are tinged with fear and worry. I'll start breathing again after.

I love my snotty, furry, leaning shadow.
I love the feel of her warm head in my hand
Her weight on my hip
Her continuing belief that she is a lap dog

Even the snot and fur that have been deposited on and in the laptop on which I type.

It's going to be okay.

It's going to be okay.

It's going to be okay.

It's going to be okay.

Michelle

The words - 8th Blog Birthday

[Image: a selection of colourful compression stockings create a figure eight. They sit on a dark brown wooden table top desperately in need of some oil.]



I've been blogging for eight years today.

I have shared 100s of 1,000s of words on this screen. I have 100s of 1,000s more in drafts. Half-formed thoughts, anger and sadness spewed onto the draft screen just to get them out. Disconnected words, floating on the screen trying to find a mate, or a 'the' or an 'and', but none are in sight. Happy words are there too, but they often seem harder. Harder to feel real and less treacle. So those posts tend to sit like a poorly written Hallmark card, waiting to share their joy with others. All the words waiting to be rounded up and directed. All the words that are no longer relevant. All the words that served a purpose. That are no longer needed, though I thank them for their service.

I go back and read earlier posts and wonder who wrote them. Who was that woman? The one that was both bursting with words and emotions. Who felt alone and scared until she found others in the same spot. Who used language that she would never now use. She knows better, she tries to do better. I read those posts and see a reflection of the newly diagnosed patients of today, and tomorrow. A desperation and relief. When you're drowning not waving, and you want one person somewhere to throw you a life preserver and bring you into the safety of your tribe.

I see a development in words and beliefs. The fickle nature of illness, of my reaction to it. Healthy reaction. Definitely unhealthy reaction. My reactions are better now. Or at least most of the time. There are times where I cock up. Again and again. Where all I want is to construct a pillow fort and hide away until the world passes. Where I hide from myself and the aspects I want to rip off and toss away. The parts that are tethered by bungee cord, bouncing back no matter how far I throw them.

I see the change in words. The flow that changed a couple of years ago when cognitive issues passed the brain fog stage to something more. Something that plagues me now as I write, or try to write. Or swear at the screen, my fingers, and my brain. What's that word? That word? You know the word? How do you describe the thing that's naught but a projection caught momentarily on billowing smoke. Hardly tangible to start with just a hint where you hope that that pieces will eventually reveal the gestalt. That hope has a poor hit rate. Maybe 2 out of 7. I walk away, come back, swear, and swear some more. At least that never fails. Swear words are carved in stone and fire from my finger tips and my tongue.

I move away from illness though in truth it never moves away from me. I've been carving out other parts of me and my world. It's slow work but I'm determined. I have written my experience with illness, with disability, with life for 8 years. It served and continues to serve it's purpose. But the frequent posting that was necessary at the beginning dwindles. I continue to write the words. About different things, thingies, thingamabobs. I write, but the pauses, the breaths are lengthened. The need isn't as strong now, although it may ramp up again. Never say never.

But the need to document my ups and downs change as I have changed. I look back and want to change words, I would write my experience differently if I was starting now. But my writing now is built on those old words. On those old thinking processes. On the therapy they provided. I want to rewrite the past, but the past is part of me, those words are part of me.

It's not only my needs and life that have changed. There are names that pop up in the comments again and again. So familiar. And then they are gone. Some who became well and moved on with life. Others who sadly are nolonger here. Regulars who disappeared but still pop in on occasion. Others who disappeared without a trace. I hope they are well and happy. I hope their disappearance meant joy and life. New batches of regulars arise and the community reshapes itself. Friends are made and laughs and commiseration are shared. People pop in and out of lives. Friends who serve a purpose, a need that sometimes we are unaware of at the time. Then they leave or we leave. You drift apart or have a big blow up. Words on a screen can be those friends as can those who read them. And just like a friend they can serve a purpose for reader and writer until they don't.

I sit here today in my pjs. The water I couldn't keep in my mouth as I tried to swallow a fist full of morning meds dampens my dressing gown. The old brain will start to kick in around 3pm if I'm lucky. That's it's usual time. The Winter sun is coming through the blinds leaving strips of sunshine on the brown carpet. Revealing the need for a long overdue vacuum. Freyja snuffles on her couch and a layer of dog hair and slobber covers my keys. Looking at the screen through one eye I pause and wait for the thought that was interrupted by a loud car outside to continue. Maybe it will or maybe it wont. Maybe it'll pop in again at 3pm or not. Maybe I'll scurry around looking for a pen in my bedroom as the thought finally finds it's way back at 11pm just as I think my brain has shut down and I can finally sleep. Maybe. Words are harder these days. But I'll keep trying.



The words have changed and so have I.

Though my tendency to ramble is definitely intact.

Eight years of good, bad, outright crap and the odd shining moment.

Happy 8th birthday little blog.

Michelle


The line I wrote above about drowning and waving always makes me think of this old 80s song. I loved Boom Crash Opera back in the day. I still do.

When you know better, do better.

[Image: black typeface on pink background. Words say Do the best you can until you know better. When you know better, do better. Maya Angelou]



Saturday morning I quickly finished off a new post. The culmination of years of frustration sparked by one of those "straw that broke the camels back" moments. I pushed Publish, hopped in the car and drove to Melbourne to be on a panel as part of The Emerging Writers Festival. I caught a couple of the responses on Facebook, but didn't really look at any of my social media platforms, and no email, until today a week and a half later. My post-travel body is still drifting through the many stages of payback that accompany such trips. And my brain is still thick with exhaustion and looming migraine but I decided I could manage a short time of screen glare. Well if I closed one eye and tilted my head to the side. And could keep down coffee. Much much coffee.

Putting up a post that is a bit more confrontational does come with some predictable risks. You know that it will polarise readers. You hope that it may change some minds. Or at least sow the seeds to begin questioning the status quo. My use of YOU was designed to hit hard. It's difficult to put up the usual cognitive distance that allows a reader to deflect uncomfortable messages when each line addresses you specifically.

Some rose to the challenge. Some did not.

• The largest number of responses gave me an internet high five. There are a lot of tired disabled people and allies for whom my words resonated. 

• There were the predictable number of people who's responses ranged from "you hurt my feelings" to "I'm never going to help a single disabled person ever again" to "Fuck you, you ungrateful bitch." 

Then there were the group that give me the greatest warm and fuzzies, and leave me with hope for change.

• Those who were left feeling really uncomfortable after reading my words, but wanted to know more, who wanted to do better. Who at first sat back shocked. Then processed their feelings and responded with openness. Who approached an emotional and intellectual challenge as a moment to learn. 

In many ways I feel this last group are my people. I am learning. Or perhaps I should say unlearning and learning. About disability, about ableism, about inter-sectional perspectives, about my place in the community and the world at large. I certainly don't get it right all the time. It can be uncomfortable to have that pointed out. But if you are truly open to learning, and positive change, you have to become comfortable with feeling uncomfortable. And if you consider yourself an ally to the disabled community, you have to listen to our voices even when those voices makes you feel sadness, anger or guilt.



I grew up in a very conservative household. One with little in the way of self-reflection. I pushed against it thanks to two extraordinary teachers I encountered in high school, but as kids often do, I mostly toed the party line. After moving out of home at 17 and finding a new world both complex and beautiful, I began a process of growth. One that continues to this day and will continue for the rest of my life.

A lot of that growth was painful. But challenging the safety of a very certain and concrete world view is always going to be tough.

There have been some big changes over the years. World views that are now polar opposites to those with which I was raised. In a way they were obvious and easy.

It is when you believe you are already enlightened about a certain issue, only to realise you have but scratched the surface or may, despite your best efforts, have gotten it wrong, that the real work begins. And it is work. You have to engage. To read. And read. And read. And listen to the words of those with lived experience. And uplift and promote those voices over your own. It takes time and effort. It is frustrating. And will make you recoil at points. Though the recoil is more often at the safe self-image or beliefs you have held, than the new information with which you are confronted. It's tough work. But work that must be done if you want to be a half-way decent member of what is now a global community.

Through the process you need to keep a few things at front of mind:

No one is going to give you a pat on the back for your work. 

Nor should you expect them to. 

It is not up to marginalised groups to educate you. 

It is not up to them to suppress their anger.

To be grateful

To reframe their lives to make you feel comfortable.
or 

Give you a gold star for being 

a decent human being.

This goes for all of us, including myself. For 44 years I have worked and continue to work. That's part of the human experience. The more I engaged with other people, people with life experiences outside my previous frame of reference, I had to reprocess my views. I had to listen.

In reality I did have a choice. A choice to withdraw to a safe bubble that reinforced my existing beliefs. I could choose to be selective in what I read and with who I associated. That's the easy and comfortable path. A path many take. But a path I chose to reject.

It was uncomfortable at times. There was a level of guilt that threatened to overwhelm. How could I have thought that way? Why did no one tell me there was another way? It is challenging to think you know how the world works, and then find there are a billion other worlds you had no idea even existed. And, that your view is kind of shit.

I type here realising how far removed I am from my childhood and how thankful I am for the often painful change it has taken to get to this moment in time. I know my education is far from complete and many more uncomfortable times remain in front of me. I know I need to centralise and prioritise the voices of those with lived experience from a wide range of communities, many of whom I am yet to meet. I need to listen. Really listen. To sit aside my beliefs, examine my privilege, and take on board new information when it arises. If I find there's another way to move through the world, a better, kinder and fairer way I have to incorporate that into my world.

As the saying goes,

"When you know better, do better."

And the next time you know better, do better once again.

And the next time, and the next....




And so we come back to disability. The way society reacts to disability and when disabled people speak, continues to be quite shit. And that needs to change. I am a product of that societal discourse. And trying to reconcile myself, illness and disability has been incredibly tough because of the pity/tragedy/overcoming/bad vs good, disabled person narrative and the way we internalise those negative messages as truth.

The Social Model of Disability: The social model sees  ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others. A social model perspective does not deny the reality of impairment nor its impact on the individual.  However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity.

(Source)

I worked in health prior to becoming ill, yet I had never heard of The Social Model of Disability or terms like Ableism and Internalised Ableism or Intersectionality. Instead The Medical Model which concentrates on impairments and paternalistic views, dominated discussions. And whilst I prided myself on patient-centred practice, I realise now as a patient and disabled person, that my professional and personal ideas on the topic are very different. There are elements of life with chronic illness and disability that I would never have even considered as I did not know they existed. My good intentions fell short. Not that I knew. If I could go back now I would change my practice but it shouldn't take personal experience to create that change. I wish the push for patient and personal narratives had been as powerful at the time as it is now. Because lived experience brings a truly unique perspective that should be guiding both medical and disability narratives. That should be guiding the discussion in the media and society at large.

It was not just my work environment and tertiary education that was lacking. I also had a lifetime of messages around disability and illness threaded through my being, many of them were on speed dial in my head. Every new moment of illness, every new need for help was influenced by those lessons. And I have spent much of the last 10 years untangling them and the harm they have caused.

Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. (Source) 

As a child I was sick. Pain and fatigue, amongst other unsavoury symptoms, were a constant companion from the first day I woke up aged 12 unable to bend my inflamed and swollen hands. I internalised the messages from family, teachers, school friends and doctors that I was weak, morally and physically. I knew I didn't have a real illness, and should shut up and suck it up. Real illness and disability were easy to spot and should be treated with equal parts pity and tragedy. I didn't make the grade with my weakness. Not even worthy of negative illness and disabilities narratives, just derision and constant reference to my pathetic inability to just 'Harden up, Princess". Blame and illness went hand in hand. Even in the classroom when I was unable to take notes or participate in PE, there were no accommodations. I was informed, subtly and often overtly, that I was a pathetic inconvenience.

Internalized Abelism: A practice where disabled people internalize the ideas and prejudices of society that see disability as ‘other’, as something undesirable, as tragic and as something to be shunned if not pitied. This in turn results in the disabled person loathing themselves and their bodies. They inherently see themselves as lesser human beings....(Source)

I held onto those lessons each time illness came my way. I now have the name to describe my experience, Internalised Ableism. And there's nothing like whipping up those negative disability and illness narratives into overdrive, and spending my days and long sleepless nights, in self-flagellation. When in my early 30's my genes really kicked in, I relentlessly beat myself up with those lessons. I thrust the cruel words of my youth at myself and as much as I'm loathe to admit it, at others. Thank goodness for therapy. I'm grateful every day that I took the leap and embraced the process. But I still struggled with seeing my experience clearly. I had finally started to work through a lot of my baggage related to illness but disability was something that I couldn't connect to. Something I didn't feel I had a right to connect to. Even as my level of functioning continued to decrease and I was disabled by both my body and the world around me, I was unable to connect the dots.

Internalised Ableism is a cruel beast. One I am still taming.

And it's a burden that none of us should have to bear.

It took meeting some incredible disability advocates to point me towards a different way of looking at both disability and illness. And in turn myself.

I read their words. I availed myself of the wealth of information available on the internet. I read and I listen. Again and again and again. I did, and continue to do the work. I still don't get it all right and I still struggle with certain concepts, but I don't turn away. We are a diverse group, with diverse experiences and beliefs. And it's a lot to process. Ideas around Intersectionality have also come to the fore in recent years. It's a lot to unpack and learn, but again I read and I listen. Because I want to be my own ally, and an ally to others in the community.

Intersectionality is a concept often used in critical theories to describe the ways in which oppressive institutions (racism, sexism, homophobia, transphobia, ableism, xenophobia, classism, etc.) are interconnected and cannot be examined separately from one another. The concept first came from legal scholar Kimberlé Crenshaw in 1989 and is largely used in critical theories....(Source)

There are amazing disabled people whose voices I needed to hear. They challenged me (continue to challenge me). So often there'd be an element of what they said that in challenging, also articulated my experience in ways that I had never been able to express before. In ways that made my experience make sense. And that has been a gift. A gift I want for others. For those who want to be allies and for those who are part of, or will be part of, the disability community.

I am a proud disabled woman today thanks to those who have shared their words and their experience. 

Disability advocates are writing about their experience, attending conferences, and providing education services. Online communities abound as do personal blogs. If you consider yourself an ally you need to engage. The information is there waiting for you to access. Don't wait for or expect us to educate you. You are but one in a relentless wave of questioners and the emotional labour demanded is exhausting.




I choose to challenge and learn for myself, for my children, for all those who still struggling. I choose to challenge and learn for myself that all our efforts combined can one day change the narrative around disability. That others will one day not experience the same harm. I choose to share my voice, my angry and frustrated words, that others may also feel confident to raise their voice and also share their experience.

And I don't apologise for sharing those words. For sharing my truth.

I understand what it's like to have your views challenged. To have to acknowledge your privilege. To feel the first uncomfortable creep. It feels very personal and challenging. I've been there. We all have.

But that is the point where you can choose to listen and learn, or choose to turn away.

That's on you, not me.



Michelle