Wednesday 28 October 2015

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.


*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!

Tuesday 27 October 2015

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.
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.


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

Thursday 15 October 2015

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 herehere, 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.


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.