Thursday 31 July 2014

Living Colour

I watched Amelie today. The colours, the vibrancy, the whimsy. The focus on the joy of small details. I could quote it by now, in a very shoddy French accent. Watching Amelie again, I am once more struck by the familiarity of the aesthetic of the film. When she is skipping stones on the river, vibrant red dress surrounded by verdant green I want to be there. How I ache for colour.

(Narrator: Elle cultive un goût particulier pour les petits plaisirs. Plonger la main au plus profonde dans un sac de grains, briser la croûte des crême brulées avec la pointe de la petite cuillere.

Narrator: She cultivates a particular taste for the small pleasures. Immerse hand deeper into a bag of grain, break the crust of burnt cream with the tip of the teaspoon.)

I watched Frida. The colour, the vibrancy the power and the visceral reaction to her work and her strength. Her work is unapologetic. She is unapologetic. Her internal dialogue is shared on canvas or the plaster cast on her torso and is lived. She embraced her weird rather than hide or run. 

Frida Kahlo: You've lost weight.
Diego Rivera: And you've lost your toes.
Frida Kahlo: Is that why you're here? To offer your condolences?
Diego Rivera: I'm here to see how you are. How are you?
Frida Kahlo: Tired of answering that question. Otherwise, like shit.

That last line cracks me up every time.

I watched Midnight in Paris. The colour, the vibrancy, the sense of place and being lost in a world of imagination, possibility and renewal. Discovering your place. And the costumes. Oh the costumes. 

Gertrude Stein (Kathy Bates): The artist's job is not to succumb to despair 
but to find an antidote for the emptiness of existence.

I watched The Diving Bell and the Butterfly. The story of French Elle editor Jean-Dominique Bauby, who lived with Locked-in Syndrome, following a massive brain stem stroke. His only mode of communication an eye blink. He dictated his book, Le Schephandre et le Papillon, upon which the movie is based, dying 10 days after its publication. It is beautifully shot and his words lyrical. As a patient and someone who worked in neuro rehab I wish it were compulsory viewing for all medical staff. A reminder that inside the broken body, a person still resides. A person deserving of compassion and respect.

Jean-Dominique Bauby: My diving bell becomes less oppressive, 
and my mind takes flight like a butterfly.

On a side note, I wish our Australian hospitals took a page out of the French rehabilitation hospital. Green walls, red velvet curtains, open windows, paintings and pictures pasted everywhere something so taboo here. And set beautifully by the sea. I did a placement at a rehab hospital on the beach here in Melbourne. The environment alone was healing. But the land was a monetary boon and it was sold off and the rehab unit incorporated in another hospital set on a windy field on the edge on an industrial area. 

I have spent my time searching through art websites. I found the name of this vibrant print I was given for my 40th. It has escaped me for so long despite knowing it initially. A print I love by an artist I love. Name and print combined. History and story remembered. 

(Rose Seidler's House, Shag, 2006)

I found a print by the same artist that I'd love to have one day. I spent hours browsing his catalogue. More stories, more elements I never knew. Losing myself for a while. 

(The Lost Book, Shag. Outre Gallery)

I stepped outside and pulled a spent bloom from my cyclamen, Audrey II. The colour, the vibrancy, a reminder of those who care and support. Cyclamens and I have a rough history. I love them but they seem to see me and instantly keel over. But not this one. It thrives on my neglect. Maybe that's the lesson. 

I lost myself in the words of Neil Finn. I let the words enter and break down my resistance. I let myself feel and I let myself react. We claim his as Australian, though he is from our sister country New Zealand. But he is part and parcel of my Australian history. From Split Enz to Crowded House to his solo work. I have grown up with his work. A master story teller. A master songwriter. A true artist in a time of pretenders.

Hey, whenever I fall at your feet
Won't you let your tears rain down on me?
whenever I touch your slow turning pain.

The finger of blame has turned upon itself
And I'm more than willing to offer myself.
Do you want my presence or need my help?
Who knows where that might lead
I fall.
(Fall at your feet, Crowded House, 1991)

I ate up stories, real stories of real lives. Writers? Bloggers? That distinction is laughable for many. Voices owned and the passion of that ownership conveyed on the page. The messy, painful, raw and beautiful lives of others. Because there is beauty in pain. Beauty in the sharing. A gift in the access. And catharsis in release and discovery of a kindred spirit.

I read The Sound of a Wild Snail Eating in a single day. I read and I absorbed and I was transfixed by shared experience and essence. Vibrancy and life seen in the midst of a difficulty I understand only too well. I was reminded by a friend about the book. Someone whose heart shows in everything they do. I wrote the author on a whim. On a need to share how her book found it's way to me via a friend on a day where I needed it most. How moments collide just when you are feeling adrift. To my surprise and delight she took the time to write back. A gesture that reminds that people care. Even strangers on the other side of the world.

And healing can resume, begin, and continue.

That relentless and overwhelming exhaustion that perfuses my being is slowly abating. My body is still stagnating in continual dysfunction marked by pain and weakness. But I am healing me through self care and the care of others.

Family is not born of blood. It is not born of genes or parentage. It is not born of geography and proximity. It is born of action. It is born of time given. It is born of support written. It is born of a phone call. Of caring given without expectation.

It is born by those who remind you that you matter when you are having difficulty in remembering it yourself.

I am grateful for the family that surrounds me, in person and in the ether. I am grateful for the connections that exist. Some fleeting and some enduring. But each providing another thread to sew me back together.

I am grateful for that little feeling deep down inside. That tiny ember that is fanned back into life with every little kindness

I am grateful and I am healing.

Slowly. At a snails pace.

And I am living in colour.


This may be my favourite Neil Finn/Crowded House song, although as I write that I can think of another dozen I would call favourites. I think it's the truth and genuine feeling that inhabit his words that have always drawn me to his work. Crowded House's first self-titled album was the first cassette I ever purchased with my own money. I still have it. 

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

Tuesday 29 July 2014

No casseroles for you.

I could go a good casserole right about now. I know the family could too. I've been stuck in bed and pretty much non-functional for a couple of weeks. But the casseroles are nonexistent. You get sick and people bring casseroles. Or at least that's what TV has taught me. But we continue to be a casserole-free zone. Mr Grumpy and my youngest have taken over kitchen duties on top of the cleaning and the laundry. With little grumbling, I should add, as they know how ill I've been. It's been a hell of year and I swear I must be due for my free coffee on the next soul-sapping ER admit. But in reality my small nuclear family and my online family are the only ones who've noticed.

Long term chronic illness is not the disease/disorder/syndrome/illness that spurs people to pop over with a casserole to help out. Actually it's not even long term chronic illness. If I think back over the last 8 years there are two people who have brought food to my house to help out, when I was struggling to make my way to the toilet let alone to the kitchen.

Two people. 

That's it. 

I read an article a while back where the author wrote:

Mental illness is not a casserole illness; don't expect people
 to be stopping around with food.

In reality, you could swap mental illness for a whole host of chronic conditions, like say, Dysautonomia.

When I read stories about people becoming ill and then being inundated with food and help it jars. That has not been my experience, or the experience of many patients with chronic conditions. There may be an initial burst of help if an illness begins with a crisis situation. People understand acute need. They respond reflexively. There is a need to do something to help. But if you are stupid enough to do a slow and steady spiral of decline rather than a flashy sudden arse-up, do not wait for the lines of casserole bearing friends and family. Because unless you're one of the lucky few, they will not eventuate. Even should you have repeated hospitalisations or emergency room visits, after the first few times or years, the novelty wears off. 

Even worse than that initial decline is when you persist in being unwell for a substantial length of time with no foreseeable end in sight. Illness is seen in two modes, recovery or death. 

If you do neither it seems the wider community doesn't know what to do with you. You haven't met the cultural norms and that challenges a lot of people. This is where blame and disdain sets in. You must want to be ill or you're not trying hard enough. Repeated or sustained caring becomes burdensome.

You're still sick?

And all it's variations are a common theme for those of us with chronic illness. 

Sorry about that. I know it must be hard for you to put up with me still being ill. That five minutes once a year you grace me with your presence must be so onerous. I only deal with it every hour of every day for the past 8 years or as I like to now think of it, 2920 days of being ill or really ill. 

Admittedly it's hard to participate in relationship building and maintenance when you can rarely leave your house because you are riding the porcelain bus every day. The casual spontaneous meet ups, at the front desk at work, or at the local cafe, yoga class etc that form the interconnecting fibres of shared experience are missing. On the odd occasions that you can get out you miss the conversational shorthand. No I hadn't heard the girl from pharmacy was pregnant. No I don't recall that creepy guy at the pub. I have no opinion on the hotness of the new consultant on the ward as I haven't been there for a two years. And those bonds start to fray.

People are busy. I hear that a lot. 
They do care, but they are so busy. 

She'll still be sick tomorrow. And tomorrow becomes the next day, the next week, the next month or the next year or never.

There's no obvious brave battle to fight or win, as every day is a series of tiny battles unknown to others, but very salient to those on the frontlines. 

No life to be celebrated after the end, as it is slow lingering decline of the it wont kill you, but it'll make you feel like death variety. End simply doesn't have a place in chronic illness.

There are no awareness days for long lingering unclear illness. House taught us that a diagnosis can be found for every set of symptoms. Sure your treating team may nearly kill you five times in the hour long episode, the consultant is an arse, but in the end you'll have an answer. Unless you live in reality and know that life and illness are rarely so neatly packaged. Those who have internalised the idea of illness resolution are left confused. 

All the usual markers of understandable and societally normalised illness are missing.

Visits stop. Phone calls stop. Texts and emails stop.

And no casseroles appear miraculously on the doorstep.

And yet I am sicker now than I was at the beginning. And my family has taken over a host of duties that I can no longer perform. Whilst also caring for me when I am at my worst.

This is the story of many with chronic illness and disability. Hidden stories because there is no one left to view and no one left to talk to about it all except for others online in the same position. Chronic illness and disability are isolating. A lack of physical visibility, becomes a lack of thought visibility. We exist on the periphery, in no woman's land. Where if you are lucky you are blessed with one or two people outside your nuclear family who persevere. 

Last night Mr Grumpy had to carry me to and from the toilet. My youngest cooked dinner and did the dishes, and one of them put on a load of washing. My last attempt to leave the house ended after 30 minutes thanks to overwhelming nausea and pain that landed me back in bed. Because that's where we are at right now. But this is eight years in. Whitenoise to those around us. It took a week for a single family member to call after my last ER admission. I'm always ill and always in the ER these days, and they are busy. As I said whitenoise.

Screw casseroles. I like a roast chicken better anyway.


You know I never thought I'd post a Katy Perry song on the blog, but this is a bit of a guilty pleasure. You know what, many of us may be forgotten by the wider community, but we are damn strong and still kicking.

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

Thursday 24 July 2014

Be quiet little disabled person. You are making me uncomfortable.

I wasn't going to post about this issue. I am still angry so not in the most diplomatic of moods. But sometimes it's write it out, or sit and stew. So writing it is. 

A funny thing happened yesterday. A local radio personality admitted on radio that she had parked illegally in a disabled parking bay at a shopping centre and to compound her indiscretion and cover her crime, she affected a limp so people would think she was disabled. Cue laughter. Well laughter on the radio program. Not in the wider community. Especially not amongst disabled people and their allies. Those who complained were referred to as a "lynch mob" by the offending radio presenter this morning. Apparently the disabled community was "incited" by a fellow radio presenter, who rightly took offence to not only her actions, but segment in which it was the subject of much mirth, and called her on her behaviour.

Because we need someone to tell us when to get angry. We'd never work it out ourselves.

Her response this morning: "Now I need to point out I wasn't imitating a disabled person I have far more respect for them."

Well apart from the affected limp so people would think she was disabled and not question her illegal use of a disabled parking space. Or that she thinks a visibly discernable, stereotypical disability is the only type of disability there is (but that's a whole other post).

And those who raised their objections are named a "lynch mob".

After putting it to air on her own show and having a good laugh about it all.

Apparently disabled people should sit back quietly and smile like good disabled people, and not call her out on her ableist and illegal behaviour. How dare we be offended? How dare we react?

By calling responses a "lynch mob" she misses the greater point(s) and relegates what are reasonable objections to her behaviour to irrational mob mentality. And frankly, just fuels the fire.

It places her in the role of victim.

It downplays the difficulties and discrimination faced by disabled people everyday.

It downplays our right to voice our disgust when someone not only takes a parking bay designated to make the community accessible for those with disabilities, but also mimics disability and then laughs about it all.

Is she really surprised that the disabled have a voice and can use it? That we have minds and can formulate our own opinions? That we know how to use social media? And that we are no longer content to sit back and accept the ableist behaviour of the wider community. No matter who the perpetrator or the level of their transgression?

Her reaction plays into the idea that disabled people should sit back impotently and wait for others to speak and do for us. It plays into the idea that we should sit there smiling and grateful for the crumbs and pats on the head doled upon us by much of the wider community. It plays into the idea that we are incapable of having our own voice.

Admittedly the disabled community was already a tinderbox waiting for a spark. The current political and community discourse surrounding disability in Australia has reached a low of late. The loss of the Disability Discrimination Commissioner. The ceasing of funding for the only mainstream media voice for disabled people ABC RampUp,  attacks on the Disability Support Pension and labeling of recipients as lazy and scroungers in the mass media, mixed messages about delays to the rollout of the National Disability Insurance Scheme, to name but a few, have all led to a feeling of deep disrespect and outright hostility towards the disabled community.

Admittedly this is not the most outrageous or serious offence against our community. The appalling figures on violence against the disabled receives little to no airtime despite the seriousness of the issue. But this presenter's actions represent the more subtle, casual disdain for the disabled community that many experience every day. And in many ways these so called lesser offences are the foundation stone that allow all the other serious transgressions to occur. We let this go and it makes the next offence easier to bear. We let this go and it reinforces that these casual events are okay.

We are "told it's a joke, it wasn't directed at you personally, I was laughing at me not you, I like disabled people, I have a cousin who's disabled, stop being so sensitive, get over it, PC gone crazy, people are starving in Africa, war in the Middle East," etc.

Shut up and smile for the photo op disabled person. We like our disabled inspirational or pity worthy. Not pissy and noisy. You make us uncomfortable when you point out our ableism. You make us uncomfortable when you show you have your own voice. Sit back and let us tell you how you should react.

Sit back down while we tell you, you've made us feel bad.

I, like many, live with disability everyday. I live with the limitations and difficulties of my disorder 24/7, day after day, year after year. My family lives it with me. I have jumped through hoops for a disability parking permit. I jump through hoops to get minimal help. I have to prove my disability. I have to make my way in a world not designed to accommodate those of us with disabilities. I deal with judgement and disdain every day. I am told how I should behave and what I should say and how I should deal with my disability by those not living my experience.

I am entitled to my outrage. I am not a lynch mob. I am a woman with a disability who is sick and tired with the pervasive attitude that I am lesser, that I am other, that I am incapable of seeing blatant ableism when it occurs, and that my life and your reaction to it is fodder for laughs.

You may not understand my outrage. You may not understand what you did wrong. But that is your limited comprehension and empathy. And it doesn't make your behaviour any more palatable, or my outrage any less valid.

Apologies after the fact only when you are called out on your behaviour are meaningless.

Apologies that seek to excuse or minimise your behaviour are equally meaningless.

Apologies that seek to place you as the victim are insulting.

We have heard it all too many times before.

It shows that at heart you still do not understand why your behaviour was inappropriate.

It shows at heart that you do not appreciate the offence you have given.

In this case it shows that neither the perpetrator, the bystanders on the day, or the radio station who did promos based on the event, understand the offensive nature of the behaviour.

I am tired of having to explain and educate.

I am tired of fighting for simple respect on top of my dealing with the challenges of my disability.

Every time these events occur we see and interpret them through our lived experience. We carry a life experience marked by the general feeling that we are seen as less and other.

If this presenter and others like her cannot understand that, I am sorry for them.

As someone appropriately shared on Twitter last night.

"The standard we walk past, is the standard we accept."

I will no longer walk on by.


*I did just want to add I do not agree with comments that have brought her child into the discussion or the use of some of the derogatory names that have been thrown around today. This does not add to the important dialogue that needs to take place and only creates further discord rather than respectful and meaningful discussion.

Wednesday 23 July 2014

The Art of Standing Still

(Mocked by Meerkats. What pesky human? You can't stand? Bwahahahahaha. source)

As I stood next to the television in our bedroom turning it on and off, the failsafe way to reset its permanent glitch, I felt my legs buckle. Enough time for a panicked "Shit!" to register in my mind before my knees met the wooden side of the tall boy with a thump. I hung perilously between the tall boy and the standing mirror beside. The standing mirror which tilts with the slightest pressure. Before my grip is compromised and I'm down on my knees on the carpet, head swimming. Two seconds of standing still and my personal glitch had been activated. And I am left panting, head pressed against the tallboy forcing back tears of frustration whilst wishing I had vacuumed my bedroom in the last century.

The three metres from bed to television had been traversed with care and the occasional list to the left. More complex than it should be, but doable. The initial stand, from bed to feet-on-carpet-and-upright, always the tricky part. The head rush. The moment of disorientation. The frustrating mid-step of sitting on the edge of the bed for it to pass before standing and repeating the same shifts in consciousness. But if I can get my legs moving I can keep upright long enough to reach the television, or on a good day, the kitchen. Those steps a cakewalk when compared to those few moments of standing still.

Before I was diagnosed, when my body was in those early days of glitching, I never stood still. I was a twitcher and a leaner. When I would pause in the corridor to speak to a fellow staff member I would move my weight from foot to foot. I would progressively pump my leg muscles, a trick learnt from lengthy military parades (fainting and sticking a bayonet in a fellow parade member tended to be discouraged). I would move my arms and at times, lean against a wall or any available table, trolley or bed. My body instinctively compensating for my failing system long before I knew there was a problem.

My work required a lot of standing. I would stand at bedsides, when providing inservices, or writing in medical files. I would stand in corridors. In tiny consulting offices when the limited chair space was taken. In line for coffee at the cafeteria. In elevators, at filing cabinets and photocopy machines. And if I had lucked out, in line to pay the exorbitant hospital parking fees. As time went by, my inability to undertake this one simple act impacted on all aspects of my work. 

I spent much of my time getting up close and personal with floors throughout the hospital and in gutters outside in the carpark. I would walk from a patient's room to my office leaning against walls and keeping going by strength of will alone. Ignoring questions from colleagues as I stumbled forward, focused on the desperate need to reach my office. I'd get into my office leaning and half sliding on the door frame. Slamming the door shut before making my descent down the wall to the floor. Hopefully keeping any food or fluids on the inside rather than the panicked reach for my bin or the sink on the side wall.

I spent time checking my shoes or dropping pens, just so I could stop standing and crouch down to a more palatable position. I was an expert at looking for things under desks or in the lowest drawer of the filing cabinet. In group photos I would sit in front or kneel at the side. No standing photos for me, especially in those last few months. Or the day I first collapsed at work. One hour before a photo taken for the hospital newsletter shows me leaning on a desk next to our head of dietetics, because standing was just too complex.

Apart from the duration of my feasible standing time, little has changed. As things progressed I would be the woman checking her bags on the floor, or that oh so interesting book on birds on the bottom shelf, whilst in the line at the post office. Then it was window sills. Amazing how much of your bum you can fit on those tiny ledges. Or more than one gutter outside a fish and chip shop or hairdresser.

And now. I sit in the kitchen, on the bathroom tiles, in the laundry, and under the hills hoist out back. I have a chair to cook with. A chair in the shower. A chair near the backdoor and the front. I can leapfrog my way from chair to chair throughout the house. And I have my furniture and wall walking down to a fine art. Keep those legs pumping, just don't stand still. 

In life we stand from the time we get up until the time we go to bed. Brushing our teeth, in the shower, at the coffee machine. Making dinner and folding laundry. At supermarkets and post offices. Concerts and sporting events. Standing, and in particular standing still, are part and parcel of daily existence. That something so fundamental and so easy should now be so hard, seems farcical. And yet that is where I am.

My body's glitch means that the most basic of activities is beyond me. If only I had a switch like my television to reboot my system. A quick fix to a problem both simple and complex. 

And now as I lie here with my television glitching yet again I shudder at the thought of repeating my earlier efforts. 

I have lost the art of standing still. 

May be time to just listen to some tunes on my laptop. Who needs to watch the abs of Christian Bale in Batman, when I can listen to some 80's glory. I'm Still Standing by Elton John is coming up on the play list.

Wry laughter seems appropriate right about now.


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

Tuesday 22 July 2014

Collect your scars and wear them well.

We are all a product of our past. The things that happen to us.
The things we do. The way we interpret them.
The power we continue to give.
We are a product of wounds and scars held together by good times, many or few.

I've been thinking a lot about the past. Being stuck in bed will do that to you. Nothing but my thoughts are active. My limbs too weak to tap away on the phone or keyboard leave me to ruminate.
To pull apart and review with fresh eyes. A past of decades, years and months.

The past is continuous and fluid. Each second experienced becomes past in a heart beat. No neat lineal path. But a collection of events, some leapfrogging others to link then to now. Peeled away and re-stitched to other events in varying orders as more is understood. As we better understand others.
As we better understand ourselves.

My idea of good and bad unique to me. A matter of perspective.
A matter of choice and chances, made by myself and others.

Looking back I wish others had behaved better. Looking back I wish I'd behaved better.
It goes both ways if you're honest.

Wounds happen. Scars cover them. Some scars are better that others. Some never fully heal and others become part of the landscape.

Don't talk about it. It being, anything.
You don't talk about that. Don't share. Don't speak up. Be quiet.
That's embarrassing. No one wants to hear about that

The 1980s were a different land. You didn't talk about illness. You didn't talk about family. You didn't talk about things that happened to you or your friends. Secrets whispered in the dark to girlfriends, or more often hidden from those who unbeknownst to you lived the same life and had the same problems. Wounds were gathered with alarming regularity and varying severity, but always hidden from public view.

You didn't talk about anything that mattered, that shaped, that broke, or mended. You hid it all and stuffed it down. And the universe laughed at your efforts. And the more you stuffed that down the stronger it became. Shaping you in ways you were unaware, or at least you stuffed down any semblance of awareness that dared to try and break through. The way you thought about them was warped by the times. Warped by lessons internalised since the earliest days of memory.

And if you did think about it. If you did feel. You told yourself it was wrong. That no one else thought like you. That you were weak. That there was something wrong with you. Shame born of silence.
A burden born by all yet experienced alone.

Breaking through that has been a hard road. I would start to speak and then withdraw even further. I would sit back whilst others spoke and say nothing of my own experience. Fear of judgement still shaping my interactions. Even now there are things never discussed. Some forgotten until something in the day-to-day clicks and it comes into awareness. Some that just sit there waiting to be shared but being pushed back down. Not yet. Not the time. One experience at a time, thanks.

The scars of life.
They shape you.
They shape how you think about yourself.
They shape how you think about others.

Shame and weakness. Never being good enough. Never trusting others.
They are the burdens I carry. They are the burdens that many carry.

I'm not sure when that began to change. I'm not sure why. I do know that it's an ongoing process.
An emotional cha cha cha. 

But instead of letting that past define me. Instead of letting all the bad shape me. I chose to see it as a blueprint for what I don't want. I want to remember the past. I need to remember the past. Not to dwell on the times I felt less, or the times I felt scared, or sad, or lonely. I want to remember the past to shine a light on the now.

I can't change the past. I can't change the hurts. But I can begin to heal them. I can chose how I respond. I can choose to see them as part of my story but not all of it. Plot points in the overall theme. I will acknowledge them not hide from them. And I will try to check myself and the power I give them.

For every failure there is a little thread of healing. Because every time I let it out, it is a victory. A triumph not seen before. Some scars take more time than others.
Their eventual healing all the more meaningful for the struggles faced.

I am my past. A past I am slowly learning to own. Forgiven not forgotten.
A marker by which to fully see my achievements.

I am still here and I am still kicking. I made it through. I made it. And I continue to make me.

I will speak my mind and my heart.
Sometimes with fear, but always with conviction.
I will speak to share, to heal others as much as myself.

I will collect my scars and wear them well.


Wednesday 16 July 2014

Lesson 26 in Living with Dysautonomia: Sending an Email with Brain Fog.

Step 1. get phonecall from cardio's office learning that files you sent months ago never arrived and a referral not sent off.

Step 2. say you'll send the pdf ASAP so referral can be sent today.

Step 3. spend 1hr trying to find pdf file.

Step 4. realise you've been spelling doctors name incorrectly for past hour.

Step 5. send email without attachment.

Step 6. don't worry you get a fail to send notice.

Step 7. think it must be twitchy mail program close and re-open program.

Step 8. send again.

Step 9. failure notice again.

Step 10. try from other email account.

Step: 11 another failure notice.

Step 12. contact husband at work to send for you.

Step 13. forward email attachment to yourself instead.

Step 14. resend this time to husband with attachment at his address.

Step 15. moment of inspiration "I wonder if I misplaced a full stop, or misspelled a word?"

Step 16. ah yes that pesky full stop in the middle of the a and the u.

Step 17. retype and send without attachment again.

Step 18. send follow up full email with attachment and sorry note for being brain fogged.

Step 19. email husband to say don't worry all sorted.

Step 20: send email to self not husband. Twice.

Step 21: berate technology, myself and the universe for every bad thing that has ever happened.

Step 22. receive confirmation email from cardio's office. Cry with relief.

Step 23. fall into comatosed, drooling heap on lounge.


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

Tuesday 15 July 2014

Tiny steps in tiny tasks.

My health rollercoaster seems to be more of the driving rapidly over a heavily corrugated dirt track variety, than one of those gentle older versions like the one at Luna Park, here in Melbourne. Bah. I'm still over it. No matter how much I protest otherwise. Always look on the bright side of life, from Monty Python's The Life of Brian, keeps playing in my head. But I keep getting stuck on one line "life's a piece of shit, when you look at it," pithy, no? Still I keep plugging on. Little things. Broken down into even littler things. Broken into atomic level things. That's the only way forward at the moment. But technically it's forward. And I'll take that.

Yesterday I got out of bed and went out to the garden.

(Note Audrey II sitting on my table. 
A lovely and thoughtful gift from my ladies for when I presented at 
The Emerging Writers Festival back in May.)

I rocked my pj, bed socks and son's thongs combo look. I hear it's all the rage in Paris.

I grabbed my trusty Great Dane shaped walking stick.

And made my way over to the over to the bushes by the side fence. 

I trimmed off some of the berries from the tree. Flowers are in short supply mid-Winter so you take your colour wherever you find it.

Made my way inside. Put my bounty on the kitchen bench. And went back to bed, just a wee bit exhausted. 

This morning I got up and made my morning brew. I looked at the berries on the bench and decided that today I'd take the next step.

I grabbed some old bottles from my bottle/vase collection above the stove, and filled them with water.

I trimmed up the sprigs of berries.

And popped them in the bottles.

I grabbed my old green Depression glass sandwich dish. Part of a much loved collection.

And popped it all together on our dining table.

I sat back with my coffee and admired my work. Two days to get there. Tiny steps in a tiny task.

And I smiled.

Michelle :)

This is really a random track that makes me smile. It's off the somewhat obscure and rather obviously named The Acoustic Alternative Album (2007) compilation album, which has many gems.

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

Thursday 10 July 2014

The long and winding road to Acceptance.

(If only the road to acceptance was this straight. 
And the bumps in the road as small as those tiny corrugations.)

I've had a few people message me lately asking how I came to accept being ill and all it brings. I've written about it before, but long-term readers will know that acceptance and the way I react to being ill isn't really a steady path. It's not like a twelve step program. It's not clear and straight. It is punctuated with ups and downs. Sucker punches and dark valleys. And moments of shining light and joy. Living with chronic illness is living with constantly moving goal posts. Just when you think you've got it sorted, WHOOMPH, it pulls the rug out from under you and you have to claw your way back. Acceptance walks hand-in-hand with a special form of grief that only those with chronic illness understand. And if I had to say one thing about acceptance, it's that there are no easy answers or short cuts.

I am better at accepting that illness is part of my life 95% of the time. But every now and then something arises to smack me back down to the ground, often sticking the boot in for good measure. I can tell myself or others to just be positive, or whip out an inspirational quote or three, but sometimes that just won't cut it.

The last six months have been a rough. Healthwise I've had more setbacks/exacerbations than I can count and more frustration and disappointment than I really wish to acknowledge. In December when I realised I could no longer move my toes on one foot, it was the final straw. And I ended up in my bedroom sobbing into my pillow. With illness there are points you reach where it is just too much, and this was one of those. At those times the only thing left is a big black hole that feels like it will never be filled. And the only thing that stops the tears is when you are simply so exhausted from the crying you fall asleep. Since then the exacerbation has meant that physically I've gone backwards and the toll emotionally and mentally has been pretty big. I'm slowly digging myself out of it now, but I've cried and been angry and wanted to hide from the world. I have let important opportunities slip through my fingers because I simply couldn't face them, great as they were, and deal with everything else that was going on. I let everything good and bad go by the wayside whilst I used my non-existent reserves to keep a single finger in the real world. There are still tears. And anger. And cursing of the universe. Thankfully there are more good moments now. But it's still tough and requires a lot of my reserves to keep actively seeking and embracing the better times when they occur.

Does that mean I don't accept being sick?

No. Acceptance doesn't mean I face those times with pluck and perkiness. But I accept illness is part of my life nonetheless.

So how do I reconcile those moments of sadness or anger with acceptance?

With a little self-kindness and a worldview that embraces more than the black and white we are often sold.

It means that it gets tough at times. The bumps in the road are sometimes the size of mountains. Everest-sized mountains. I can accept that I am ill and curse the universe at the same time. Because life isn't a pithy inspirational meme. It isn't clear or clean or perfect. Acceptance doesn't means things are all rosy. It doesn't mean that you don't get sad, or frustrated, or angry. It also doesn't mean that you are giving up or giving in. I'm not zen 24/7 and if I was I would probably need to be studied, or medicated, or a little of both.

For me acceptance is many things. It was getting to a point where I recognised I was wasting every shred of energy fighting and searching. So much so that I wasn't living life any more. I was fighting and I kept getting worse. And I was miserable because everything revolved around a fight I was so clearly losing. There was no balance in my life. Just a bucket load of burden I'd created for myself. That realisation was my first step.

I did start to actively look for joy in my world. And sometimes that has meant forcing it. I would make myself sit out in the garden when I least wanted. I would turn off my woe-is-me music and put on some belting rock tune. I would make myself simply stop. Illness can be bleak and scary at times. Its easy to become overwhelmed. And to both feed that belief and see everything through that filter. I started making sure I found something good in every day. Warm toast in bed, pretty flowers on a weed, a pretty water glass. Little things. Because little is doable. Really seeing and embracing those moments doesn't directly lead to acceptance, but it helps you refocus so you're in a place where you can start the process.

Acceptance doesn't mean ignoring illness (although I may sometimes put my blinkers on and pretend because that's just what you need some days). It means that I do what I have to do to manage my illness. I take my pills and put on my compression stockings. I pace myself and use mobility aids. I get my pacemaker checked and do my exercises. And then I get on with life. Illness is integrated into my life rather than being the central and defining feature. I give it a place of my choosing, rather than trying to erase it completely.

Acceptance isn't an instant process. It also isn't a perfect process. So often we are made to feel that we should find acceptance, fight the good fight, be a perky positive emblem to which all can aspire. But those are burdens we place upon ourselves. We let ourselves believe that everyone else has it all together. When nothing could be further from the truth. We expect we should be the perfect patient. And perfection has no place in illness. How could we ever expect to reach acceptance if we are continuously using a lie as a measuring stick.

I don't necessarily accept that I am ill. But I do accept that illness is a part of my life. It's a fine distinction, but an important one. It's more about putting illness in it's place rather than letting it define me. I live with illness, not despite illness. And in doing so a lot of the power I imbued it with was removed. I made a decision to change my approach. I also decided to give myself some slack.

I accept that there will be times that it is harder than normal. I accept that I will get it wrong. That I will get disheartened and cry, but I won't beat myself up when it happens. Illness is hard. Accepting that it is part of life doesn't mean that I always manage it well. It doesn't mean that I wont cock it up completely some days, or weeks or months. I try and give myself some compassion. Because no one gets it right all the time. 

I am a big fan of getting support, especially in the form of a mental health practitioner. A psychologist or counsellor who specialises in medical issues and chronic illnesses can help you navigate the path, learning the tools to make life more bearable and the difficult times more manageable. We all need to create a personal arsenal to deal with whatever chronic illness we are dealing with. Just like we take meds to help with blood pressure or heart rate, we can use the skills of a psychologist to help with the complex emotions that arrive with illness.

The world of illness is punctuated with words like should and myths of the perfect patient. We are made to feel like there is an ideal to which we should all aspire and if we don't get there we have failed. But life isn't like that. No one has it together all the time. And no one always gets it right. And that's okay. Becoming chronically ill can be incredibly challenging. And learning to accept that illness may be a part of your life for a long time, or in some cases forever, is a continuing process. 

Acceptance doesn't mean perfection. 
Acceptance doesn't mean that you are always peaceful and happy. 
Acceptance isn't static. 
Acceptance is about being kind to yourself.

Take away all the shoulds and myths of perfection 
Be kind to yourself.
And acceptance becomes far more achievable.  


I break tradition, sometimes my tries, are outside the lines
We've been conditioned to not make mistakes, but I can't live that way

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find
Unwritten, Natasha Bedingfield

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