This time last year...

I began to write the below late last July as the problems with my health were becoming more complicated. It was simply a walk, but it ended up being a real oasis-like moment of joy amidst the continuing barrage of difficulty that had thus far clouded the year. 

Looking back on it now, I'm just really, really glad that the health has pretty much done a 180 from this time last year, current flu notwithstanding. I don't know what the state of things will be this time next year, particularly once I come off the last of the immunosuppressants, but I'll damn well take what I've got - just like I took that night at a time when I really needed it. 

***

'Last night, I went for a walk from Pyrmont to Glebe.

I had just said farewell to a friend who would soon be returning to the UK and I walked along Harbourside on this quiet Wednesday night, finding it unexpectedly pleasant. Approaching the water, I realised for the first time that the South Steyne had disappeared and I ended up pausing to ask Insta where it had gone. That quick pic posted, I continued past the now empty spot on the water and could see that some restaurants and bars were still open meaning a pleasant hum of activity hung about the harbour. Tourists still milled about the food court and the Watershed was still abuzz with mid-weeknight drinkers as I walked against the cold wind and felt it numb the itchy, burning skin on my face.

Feeling the chilly air fan my face, I suddenly felt open for the first time in months, as though I was once again in a different city and enjoying the freedom of being away and exploring. It was a happily surprising sensation considering the stampeding health issues that, as of the last eight months or so, had made me feel less and less confident about a number of things, like being outdoors unless I absolutely had to or even looking people in the face. 

Then again, it was this latest problem that led to my getting to have this evening in the first place. 11pm on a Wednesday night is a fairly odd stroll time for someone who would under normal circumstances need to be at work on time the next day, however I had my first appointment in years with a derma and it wasn't till mid-afternoon so I was in no rush to get home. I had just done the walk from Glebe to Pyrmont with my friend and my ride home wasn’t ready for another hour, so I was free to stroll.

It was lovely. Due to the constant cycle of illness and recovery at the time, my most prominent state of being was severely anxious fatigue (for which I had begun to seek professional help), the complete opposite of this quiet exhilaration that seemed to grow as the night went on. I was loving gazing up at the city skyline, striding past the water and the bars and the other people, locals and tourists alike. As I made my way towards Tumbalong, allowing myself to actually take in the new Convention Centre for the first time, I admired its clean lines and scattered lights. It seemed like everything felt new and that was delightful.

I continued through the rest of Darling Quarter before gearing towards Chinatown. Thus far, it had been quiet without being too empty for a late night walking solo, lending the night an air of tranquility I don't normally associate with the city. I strolled through Chinatown, which was still lit up and comfortably busy, and eventually moved onto George St to begin the final length up to Broadway. Along the way, I made a few attempts to take pictures and as a result, I've some hopelessly hazy shots to remember the evening by.

The whole time, my skin was still burning and itching away, just like it's doing right now, and I was still grateful that the dimness of the evening meant it wasn't as painfully obvious to all and sundry as I felt it would have been in the daylight.

But despite all that, I felt more like myself than I'd felt in months. I felt freer than I had in months. The evening had inadvertently transformed into a much needed reminder that all the things going wrong hadn't erased my capacity to feel like this. To feel like I could still be outdoors (albeit at night) and still explore and still enjoy things like this newfound tranquility in the midst of a city that, much as I loved it, too often felt like a constant stampede of people.  

It was a nice realisation.'

Window

Photo taken January 24, 2016

Window

They don’t know.

They can’t know and I can never explain it to them.

That I live, and always have lived, behind a wall.

A wall with a window that only serves to taunt me

and remind me of the fact that I can never climb through it

and be a part of the Real World.

I live on the sidelines because I can’t take part in normality.

Because normality can’t help me

and I can’t help it or those who dwell there.

We are too far disconnected and the gap is uncrossable.

Is it? Is it?

Yes! It is! I’ve tried so many times!

I’ve tried and it never works!

The best I’ve been able to do is pretend.

Delude myself into thinking that I’ve reached through the window

and clasped the branch of the tree just outside it.

Clung to that branch and for that moment, owned it,

when in fact my hand only teased the air

and closed in on itself, empty as it had always been.

My closed fist can only pound on the wall for the millionth time.

It’s not my world. It never has been.

Mine is the world from which I see and don’t touch.

From which I hear and don’t cry out.

From which I smell and never taste.

Windows are not doors. They are to look through, not climb through.

If only that damned wall had a door.

But it doesn’t… and I don’t care.

Jelynn Millare © 2005

***

I wrote the above poem when I was 22 and till I posted an excerpt onto my Instagram yesterday after taking the above photo, only 2 other people had ever read it in 11 years. I'm not sure that it bears testament to my being any less afraid of sharing my writing considering the ever-delightful blend of fear and desire that overtakes any creative undertaking (not to mention, I'm still reluctant to even class this as a poem and it took me a somewhat agonising half hour to finally get over myself and put it up). It's unveiling is ultimately the product of a few test photos on my phone leading to a sudden charge of memory and the desire to share trumping my fear of judgement. 

I know we have all been there. Everyone has experienced or lived through something that makes them feel alone or strange or different. Everyone has had hopes that maybe things would get better, that maybe things were looking up, only to have reality completely knock that flimsy house of cards right down.

I've written a bit on here about the emotional fallout of having a condition which was once firmly stamped on my face and in my daily interactions with people and still nowadays, teeters on the precipice of visible and invisible. I've also definitely touched on the painful desire to creatively speak despite being emphatically ill-equipped for exhibitionism and distinctly reluctant to emotionally overindulge for the sake of being a functioning adult.  

The above is merely a snapshot of a once all encompassing mentality that has now been happily relegated to the worst moments and nothing more. The words above will always apply, such is the nature of life and definitely the nature of autoimmune disorders and creative desire, however their power to break me has been severely diminished by struggle, experience and time. 

These days, thanks to that time honoured trio, I sustain mere flesh wounds instead of scars. 

And even better? I open and close and advance and retreat through the window as I please. 

Harmonious Dichotomy

'Every so often, I look in the mirror and find myself amazed at how normal the person gazing back at me looks.

Let me explain – see, for a long time growing up, the notion of looking like a normal person (because regardless of how often we argue just what is normal, we all still at least have some idea of what is abnormal), well it was always something that felt far beyond my reach. True, a dramatic sentiment, but a sincere one. I grew up quite accustomed to having a physically visible condition and under those circumstances, you tend to weave your way between two worlds; the first being where you’ve grown used to feeling and being treated differently – in both the negative and the positive senses – and where you’ve learned to take the stares and comments and the itches and burns in stride, the second being where hope forces you to play a tug of war with yourself. You hope one day it will all go away and you will be normal and this hope both gets you through life’s oddball journey and makes you hate every second of it for not yet having reached that clear eyed, fateful day.' 

I'm not entirely sure when I wrote that, I imagine it was likely around the time I found this photo but, as is often my way, the thought went unfinished, if undiminished, so here it is.

Mari Madrid speaks to me...

As someone really, really close to a lot of people who put a high value on make up and non-surgical cosmetic enhancement, believe me I understand that some of those different folks' strokes with which I just cannot relate all have their own merit, particularly for those who approach it from an artistic and skillful rather than a purely cosmetic perspective. Furthermore, I understand that enhancement isn't the worst thing. Makeup can genuinely enhance facial beauty without being so grossly deceitful and that is a positive thing.

But at the end of the day, everything that Mari wrote in the post above is exactly how I feel about it all. I don't personally wear makeup unless I have to (read: weddings) and it was literally just in this last week that I began wearing lipstick to work - if you could even call it that considering I realised that in contrast to my friends' advice to 'put on more!', I actually genuinely preferred just that little dusting of colour on my lips to give my face a little bit more life and so dab a little on. That is more than enough.

As someone whose grown up with an ailment that, for years, was grossly apparent on my face and my body and has since left traces, scars and bruises that will now be lifelong friends, while not always being entirely happy with how I look thanks to the wonderfully human trait of vanity, I have grown to appreciate that what people see is indeed what they get, at the very, very least in terms of how I look. There are no surprises, there is no filter, no hiding behind a mask - there is simply me. I feel an abject horror of those women who look like completely different people without makeup on and I am unabashedly glad that I will never be one of them and feel that desperate need to hide my actual self.

It also means that the mantra with which I grew up - it's what's on the inside that counts - has only been strengthened. Looks can always deceive and in the end, my focus for personal improvement will always aim itself more heavily on my character over my appearance and I do my best to consider others the same way, still often needing to battle the more superficially human nature by which I judge people based on how they look, but trying nonetheless.

And you know, were I to take it further, each mark and scar is essentially a part of who I am and what I've been through and continue to live with. They are a part of my story which makes me, me. Considering my relative personal transparency (I'll pretty much talk about anything, with anyone, within general propriety of course), there then exists some form of cohesion between how I approach the way I look and my actual personal character.

But there I drift into douchey territory so I'll pull back.

What it comes down to? Aside from essentially trying to look nice, neat and presentable, I'm happy to face the world with my actual face. I'm comfortable in my own skin (well, for the most part... cheers, eczema) and feel very little need to abide by a standard of physical image that will never, ever be inclusive of all. While I would love it if this wouldn't bring with it odd looks and often grossly inconsiderate criticism, to each their own. I've nothing to hide and I'm happier being who I am and not who others want me to be.

An odd little hiccup of memory...

The awesome thing about memory is its ability to let you get thrown into a decades long, to-and-fro mental journey in just a couple of eye blinks.

A link via a friend's Facebook led me to Buzzfeed, one of the currents reigning in online nostalgic warranty, and an article on random facts that would 'shock anyone who grew up in Australia'. As one certainly of that number, I embarked on a quick skim and enjoyed the jolts of memory like remembering Benita Collings (my all-time favourite Play School star), Cheez TV (apparently the first Aussie TV show to have a website which is pretty trippy in itself, the irritatingly catchy theme immediately sounded in my mind's ear upon sight of the words) and the very real surprise that the Bugalugs Bum Thief was written by Tim Winton (the filmy memory of all those bum-less characters is still dancing before my eyes). 

Then I read that the theme to Bananas in Pyjamas was originally sung by Monica Trapaga and I suddenly heard a (somewhat cloudy) nasal, high-pitched voice gleefully squealing that name in my ear. I had to stop a second before I remembered a fellow hospital-mate from my first teenage stint at the Children's Hospital in Westmead, back in year 9 (holy crap, 1997, way to thrust yourself back into my world so abruptly). 

The bits and pieces in my head, currently attempting to knock themselves together into a picture? Light brown hair, tied up in a ponytail, glasses and a gigglesome grin, freckles and a somewhat wide set face... and rather vaguely, the name, Lauren, although I can no longer be sure if that was her name or if that was the name of one of my other ward-mates. Nope, I think Lauren was the girl I'm thinking of. Unlike many of the other girls in the ward, several of whom were suffering from eating disorders, she had a central line (for what, I never knew... at the time, I actually thought it was a condition unto itself) but her most definitely distinctive feature was her voice. Kind of thickly dopey with that little nasal edge. 

"Monica Trapaga!" She was jittery, almost as though her skin were a wetsuit she had to shrug off as quickly as possible, her eyes looking even bigger than usual behind her glasses and her 'r' teetering on that thin line between r's and w's. "Monica Trapaga!"

Simone and I only looked at her in confusion before I finally ventured to ask, "What about her?" 

"She's here! I have to meet her!"

The memory kind of seeps out of me after that point but her voice now rings loud and clear. I remember Simone, my roommate, and I finding this pretty amusing - I mean, a 15 year old getting this excited about Monica Trapaga? Still, this ethereal shot through the decades was far from unpleasant and seems to have uprooted some other mental offshoots along with it - my roommate and us ruminating over Dolly and Girlfriend mags, the TV that could move between the ward rooms and the attached VCR and Nintendo 64 on which I first played MarioKart and Mario 64, the other kids in the ward wanting to borrow the videos I had brought with me, particularly Romeo + Juliet... funnily enough, the very last memory to hit me (for now, anyway) is that of why I was there in the first place. All those dressings and creams all somehow seem secondary to just good ol' life in Wade Ward.

Not something I would have wished back then, considering I've had more photos taken of me in the last 7 years than I've ever had over the course of my life and prior to that, having them taken was among my least favourite activities (seriously, it's only in recent years that I've genuinely figured out how to smile), but it's a shame I have no photos of that time. The memory is all well and good, but it would be nice to have some solid images in my head as opposed to the cloud people and hospital rooms and corridors currently dancing about up there. 

I want to give the girl in this picture such a hug.

I want to tell her that, whether she can imagine it or not, the day will come where she won't have to wake up every morning and carefully pull the mask off of her face and then later have to cake on woolfat and cream before wrapping a bandanna around her head in order to face the world.

That one day, wet packs will have become such a thing of the past, that she won't even be able to remember the last time she had to wear them.

That over time, people will stop pulling themselves and their kids away from her and stop staring and asking her how or if she got 'burned'. That all those looks - pity, fear, confusion, disgust - will all eventually fade away into insignificance.

That one day, her swollen eyes and all those open, raw, pus filled rashes on her face and everywhere else will actually transform from raging monsters into either harmless scars or somewhat more manageable pests and that on even better days, they will go into hiding altogether.

That soon enough, it will have been 16 years and counting since her last hospital stay, a life starkly different to the days when the children's hospital was like her summer home.

That one day, she'll be able to eat more cookies and cakes than she ever dreamed of. Not to mention - chocolate. That's right, kiddo, chocolate will once again be a part of your life and not a poisonous one at that.

And after all of that, I want to thank her.

She is the reason that these days, I am often so pleasantly surprised by how normal the face gazing back in the mirror is and why whenever I find out I can eat something new, I genuinely feel like the luckiest person on the planet. She's also the source of an imagination that was strong enough to get through the hard times and broad enough to make the good times even better.

So thanks, even littler Jelynn, for living through all of that for me. I don't know how you did it, but you did. I'm an adult now and I can barely imagine living life the way you had to, although it occurs to me now that your childlike outlook was a big part of that survival. I know that it was awful for you a huge chunk of the time and I know that all you wanted was to feel some semblance of normalcy, during the good times and the bad and that this desire only made life seem tougher than it really was. Thank you for getting through it all and thus allowing me to live the much kinder life I live now. Life certainly keeps lobbing those curve balls but I wouldn't have the cajones to bat those suckers away if it weren't for you.

Somehow I hope you can hear me and feel my bear hug travelling across the 24 year long chasm running all the way back to good ol' 1990.

Love you, kid.