And it’s time.
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Life is like riding on a magical flying unicorn.
Getting a chronic illness is like that unicorn getting a puncture or losing an engine or something.
Okay, that didn’t make a lot of sense.
I originally devised this analogy with a hot air balloon, but then I thought about how fun it would be to draw unicorns with rainbows and stars and stuff, and I had a long and sensible think about how important it was to me to be clear so my audience would understand me which, in hindsight, wasn’t all that long and sensible, and now I’m finding that the unicorn is far too square to be hammered through this round hole, and what I’m trying to say is that this whole analogy is going down.
But that’s kind of the point.
When you get a chronic illness, your life becomes a nonsensical descending unicorn and the only way to keep it in the air is to carve off big heavy chucks of yourself and throw them away.
If you’re not too ill, you might be able to keep your career afloat, but only if you throw out half your social life and all your hobbies. Or perhaps you choose to throw out half your job; you work part-time but you keep on top of your groceries and housework and you get to see your friends just as often as before.
But if you’re very ill, if doctors slap adjectives like “severe” on whatever it is you have, your unicorn might not be able to carry much at all.
I threw out a job. I threw out study. But it kept getting worse. The unicorn got shot—
—so I rarely left the house, but then it caught fire—
—and I gave up all housework.
For two years, I had the adjective “severe” and a very unhappy unicorn.
I still had my partner. He supported us financially, did all the housework, and helped me when I was sick. But we no longer had a normal twentysomethings relationship. Our friends were taking each other out to bars, having cheeky shower sex, taking selfies while skydiving, bathing in smashed avocado, and firebombing napkin factories. (Or something. Being housebound leaves you a bit out of touch, so I had to extrapolate from sitcoms, social media and inter-generational war opinion pieces). We were different. My partner held my hand in waiting rooms and only slipped into my shower to stop me collapsing in the heat.
People told us how surprised they were that he didn’t leave me and how wonderful he was for staying.
(He is, of course, wonderful).
Because I was such a burden.
The guilt was worse than my illness. Which—to clarify for anyone who hasn’t been so physically destroyed that they’ve spent an entire day perfectly still, not able to move to get food, water, visit the bathroom, text anyone for help, or turn on Netflix—is really saying something.
I apologised to my partner non-stop. Every time he did a chore, got back from work, or paid a bill I hadn’t contributed to, I told him how sorry I was.
But it wasn’t enough. It didn’t soothe the guilt.
I started apologising for no reason, just because I suddenly remembered my broken body, just because he comforted me, just because I still existed. I woke him in the stupid hours of the morning to beg forgiveness. If I had been capable of leaving the house, I would have followed him all day, popping up in a flurry of ImsosorryImsosorrys during bathroom breaks and conference calls. And actually I have a phone and am resourceful enough to achieve a similar effect while lying half-dead on the couch at home.
In short, I was overwhelmingly annoying.
He sat down to talk to me about it.
I could see he wanted to reassure me, and I saw the whole conversation play out in my head. He would say all the nice things I’d heard before, that we were getting by without me working, that it was only a little more housework than he would do if he was living alone, that it wasn’t a problem to schedule his day around my doctor’s appointments. And, ace in the hole, none of this awfulness was my fault anyway.
And I knew that I would pull a face and nod and say okay, but not really be convinced.
Because I would know, deep down, that he would only say all this because when you care about someone you don’t want them to feel like they’re weighing you down. (Even if they are). And maybe because, if you really care, you think it’s worth carrying their associated awfulness.
But the conversation didn’t go like that.
He told me that I make him laugh every day. He told me I am fun. Even when I am housebound. Even when I have to lie perfectly still and can only communicate through facial expressions. He told me I make space for him to be himself. He told me he likes to hear what I have to say about things, and that I make him look at the world differently. He told me that he wants to be around me.
Instead of denying I was a burden, he told me I was carrying him too.
It was special and wonderful and surprising. A big heap of surprising. A fully-functional-unicorn-load of surprising.
I hadn’t realised I had all those things on my unicorn. Right up until then, I believed that if my ability to earn money and do other useful labour fell and smashed into a million pieces, there wouldn’t be anything worthwhile left of me.
But now maybe I do.
At least I try to believe it, which doesn’t mean I succeed all the time, but I’m getting better with practice.
And I think that there are a lot of people like me out there who have papered over their self-worth with jobs and projects and busy-ness, telling themselves it’s all integral to who they are.
Nothing is secure. Not your job, not your body, not your abilities.
But you don’t need any of it to be someone.
I am no longer plagued by the adjective “severe”. It took time, but now I can look after myself, prepare food, leave the house and work from home. Commuting is tricky, and I need lots of breaks and sick days, but that’s still a lot of easy reasons to value myself. Sometime I even forget I’m sick, but I always try as hard as I can to remember what I am underneath.
Because I like a challenge. Because while it’s great my partner likes me, it’s my opinion that matters. Because the future isn’t guaranteed.
Because a magical unicorn isn’t going to do it for me.
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You might be wondering about the fish.
It’s not what it looks like. Or maybe it is—I don’t know what it looks like out of context. Either way, I can explain.
A couple of months ago, I got a bit angsty-artist and decided I needed to do something productive and sensible to make my job feel more valid to myself. So I set out to create business cards. I sifted through my website for striking images I could base my designs around.
I scrolled and scrolled
and I found frustration,
Nothing was awesome, trendy, magical, weird or even relatable enough. Everything was bland. It was all failure.
I kept burrowing, kept sketching ideas. It started to consume me. I began in the afternoon, but somehow it was the evening.
I messaged a friend, one of those close friends you trust with your broken pieces and most despicable flaws, a friend you know would love you even if you kicked a baby sloth deliberately and with malicious forethought.*
And—because apparently I am capable of ruining even that—I sucked the conversation into my death-spiral.
Although ‘conversation’ is perhaps the wrong word. I sent over 20 messages without getting a reply, until eventually I reached the deepest part of whatever emotional swamp I was wading through and typed, in classy caps,
Fear tickled me. This time my broken pieces were too sharp and my flaws too repellent. Just as, deep down, I had always known they were. It was only a matter of time before she noticed. Soon, everyone else would realise too.
(This friend had just moved to the other side of the world, and I found out later that as this was occurring, she was lost on public-transport on her way to her first day of work. I have a mental image of some epic urban quest with trials and gatekeepers and monsters, and all the while a phone incessantly tinging with my self-absorbed pleas for reassurance.)
I took a deep breath.
And I thought back. And I realised that on the day this wave of self-loathing first came, something that might have been wonderful for my career had fallen through. Something that I thought hadn’t bothered me too much—these things happen to everyone after all, and I was too sensible to take it personally.
It was as though I had been lying in the dark, watching a looming shadow and convincing myself it was a blood-soaked monster lurking at the end of the bed that was waiting for a perfect peak of fear before it slurped my guts out. Naming it was like turning on the light. The moment I recognised what had first caused me to doubt myself, I could see the monstrous shadow was really that travesty of a jumper I had once convinced myself was an op shop find, draped weirdly on a chair.
I know, I know.
You want to assure me that bad jumpers are amazing. That my failure wasn’t really a failure at all. That these is no shame, only glory, in a vibrant, mad, misshapen, glittery beast of bad jumper.
I get that. That is, in fact, what I was aiming for.
This jumper isn’t a vibrant, mad, misshapen, glittery beast of a bad jumper. Such a jumper would belong to the queen of op shops. And I dared to believe, for one dazzling moment, that I was that queen. But then I got home and took my prize out the bag and looked at it, and I realised that I was not. Not that day, anyway.
The jumper I ended up with was a sort of old-lady-librarian chic** with a floral and leaves design in a muddy shade of vomit.
Also, it was a cardigan.
(I knew it was cardigan when I bought it, of course, but it didn’t really sink in until afterward.)
It may not have been a sadistic, blood-soaked monster, but it was still ghastly. (And it would have been so wonderful if that thing had worked out. And it didn’t).
But it was also just a cardigan.
So I took another deep breath—everyone acquires a ghastly cardigan sooner or later—and made a cup to tea—I was too sensible to take it personally.
And then I drew a comic about how I had been feeling (one that you’ve already seen). I drew myself weirdly badly being slapped in the face by a fish. I wrote this.
And I made my business cards.
I wore the metaphorical cardigan. I don’t know any other way to deal with life.
* Advice: don’t kick baby sloths. Especially not deliberately and with malicious forethought. First degree baby-sloth-kickers do not fare well in prison.
** An admittedly ridiculous way to describe it. There is a stereotype of old ladies and librarians that overlooks the reality that they can be stylish or sweet or funky but always gloriously themselves.
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When I was a child I was bullied.
Brace yourselves. I am about to do that irritating thing where I tell you a story from my life that you probably aren’t interested in, and then apply it on a wide scale, even though it’s kind of like comparing apples with orange monsters that want to maul your face off.
The bullying started with a few kids, and it spread. There was a song the whole class would sing when the teacher wasn’t in the room. It wasn’t a particularly offensive song, just a childish one. And it wasn’t the words that hurt so much as the laughter and the crushing weight of numbers. With the wider class, the song was as bad as it got, but the original bullies didn’t back off that whole year.
I’m not writing this to blame them. They were kids. I don’t know what was going on with them. I was also a kid. Initially I tried fighting back (with words). It was unsuccessful, or seemed so, but perhaps a blow or two landed and perhaps they don’t have fond memories of me either. I don’t know. But I do hope they are doing well with their lives, and if they remember it at all, I hope they learned something positive.
They’re just apples. Apples aren’t monsters that try to maul your face off. This isn’t about them.
This is about the day I tried to get help.
It took me all year to work up the guts to say something. I was afraid of being labelled a dobber, but I was more afraid that nothing would happen. That I would be told that the bullies weren’t doing anything wrong. That I deserved it.
So I waited until the end of the last day of school for that year, figuring it was the safest time. I dawdled while the other kids left. Then I went up to the teacher.
(She was one of the better teachers. She was friendly and fun and she taught well. She was a favourite of a lot of kids. I liked her.)
I learned a lot of things at school. I learned times-tables, spelling, and how to write a sentence.
And I learned that I was on my own.
Nobody would help me. I learned that the bullies weren’t doing anything wrong. I learned that I had deserved it.
I had seven years of schooling left, and I never spoke up about being bullied again.
(Silence killed the dinosaurs.)
But I did speak up for other people.
Like I said, I learned a lot of things at school. I learned about hypotenuses, writing essays and the Cold War. I learned that it is a powerful thing to tell someone that they are on their own. And, by extension, I learned it was an even more powerful thing to tell someone that they are not alone.
As a child, you think growing up fixes everything. I thought that when I grew up and left school and left home and left my hometown, I would be free.
But then I did all that, and I found that the world is still a frightening place full of monsters that shouldn’t be compared to apples. And the orange monsters in the adult-world have the power to cause destruction on a large scale.
Trump’s expressed opinions of minority groups are concerning. His promised and actual legislation against some of these groups is alarming. But it is the manner he does it—through dehumanisation, blatant lies and the deconstruction of science and truth—that is truly terrifying. Not just for America, but for every democratic country.
It is easy to feel helpless.
But there’s always something. And it is heartening to see so many people finding it.
Perhaps, as I had left it to the last day of the year, the teacher did not have any authority to enforce consequences for the bullies. Even if she did, perhaps it would not have stopped them.
But there is always something. There always is. And I know there was then, because if I could rewrite that scene I know exactly how it would go.
Because it was wrong. I didn’t deserve it. And I shouldn’t have had to be alone.
I have seen a lot of jokes and not-so-jokes about 2016 kicking humanity in the tender bits. It’s a bit weird for me because 2016 has been the best year of my life. (So far).
A year ago I was so unwell with chronic fatigue syndrome and fibromyalgia that I was mostly bedbound. Although I had planned to spend my post-uni mid-twenties traveling the world, I found myself at age 25 struggling to shower. My career hopes were dead. And I was in the surreal position of navigating disagreements with people about trivial wedding things when deep down I believed that we were going to have to cancel the whole thing because I was. Just. Too. Sick. and getting sicker every day.
And then one day in November last year I woke up and it was different. I was getting better.
Since that day I have got married, crab-danced to Rock Lobster with my family, travelled internationally, taken up writing and illustrating my comics in a professional manner, opened a store for my art, begun writing a novel and done a bunch of other awesome stuff.
I feel like I built myself a new life. Not the same life I had before and not an entirely better life. There is no escaping that I am still unwell and that this imposes limits; it is unlikely that I will ever be financially independent or capable of travelling as much as I had hoped. But in other ways it is better. In other ways I am free.
And right now, I am reducing my dose of antidepressants (with the knowledge and guidance of my doctor). This is something I have not successfully done since I was first diagnosed with depression and anxiety seven years ago.
It has been a phenomenal year for me.
But yesterday I spent the afternoon in bed pretending not to exist, unable to face the world.
There is a 2016 story that is better known than mine. I, along with the rest of the world, have witnessed bombed houses and lost toddlers. The world hardened against immigrants and refugees. Brexit happened. Mass murders happened. Australia, my own country, made its refugee policies more and more revolting. And then, finally (fingers-crossed), the US election.
This a personal story, not a political debate, so I won’t go into detail on why it was so bad. I’m far from apolitical, but I find it hard to cope with these discussions. I prefer to avoid the topic and fob off questions with jokes.
Jokes feel wrong today. So does being serious and heaping more sad on to the big sad pile. So does staying quiet and letting it go unacknowledged. Everything feels wrong.
Yesterday I spent the afternoon in bed.
The news does this to me sometimes. I am a bit broken. Not all my moving parts turn the way they should. I know this. The last time I tried to reduce my antidepressants I was assaulted by media images of the tsunami in Japan and flooding in Queensland. I heard so many stories of shattered lives and saw so much destruction. Overnight I became hollowed out and empty.
And yesterday I spent the afternoon in bed.
But today I got up.
I did some gentle yoga—partly for the mindfulness and partly because my body lets me now. I had a cup of tea and ate breakfast. I got out in the sunshine. I drew some cats.
Because I needed them for my next story. And also just because I needed them.
And I will be kind. To myself and to others. A lot of people are feeling unsafe today. I am feeling unsafe today, and I am a white, middle-class, cis-het non-Muslim half the world away. I can’t image how people in America, particularly minorities, are feeling. So I will be kind. I will be kind today and tomorrow and every day. I will make kind decisions, always.
I will keep building my life, one cat bumhole at a time.
I do not want the world to empty me this time. Instead I will fill it. I’m not sure that I am well suited to political activism, at least not beyond keeping myself informed and standing against bigotry in my personal life, but I have other things. I have stories and art and kindness and, on other days, humour.
With these things I will fill the world, drop by drop.
Cat bumhole by cat bumhole.
Once there was a girl who wanted to be a music teacher. She started playing the piano when she was eleven and the clarinet when she was thirteen. She loved playing and wanted to spend her life helping others like her have that opportunity too.
Third person, you understand. She isn’t me. Some other girl.
But actually that’s not the story. If you want to understand, it can’t start there. It has to start further back with a little girl who wanted to be a novelist. Or maybe an artist, she hadn’t quite decided.
The little girl loved reading books and drawing and making up her own stories, and she hated waking up early. She had heard that full-time writers and artists could wake up whenever they liked and never even had to change out of their pyjamas if they didn’t want to.
Sensible adults warned her that neither of these were easy careers. You couldn’t expect to make a living straight away, maybe ever, and you had to be really good.
She wanted to be really good.
She taught herself everything she could about writing from the internet, but most of what she learned was about bad writing. She read never-ending lists of mistakes and snide articles that dissected books she had loved to display their failing organs. She discovered plot holes and infodumps and two-dimensional characters and weak adverbs and purple prose and countless other things. There were so many ways to fail.
Maybe in another story she would fight on, learn things, face her demons and emerge successful and glorious.
But we’re here for the other girl, the one who wants to be a music teacher. And we haven’t quite found her yet.
You still need to know that the little girl didn’t have many friends. This little girl, the one who wanted to be a novelist or writer (but wasn’t good enough), was a social failure. She didn’t fit in and was being bullied.
And she was lonely.
So she joined her school concert band and clarinet ensemble. She had some friends in these groups and made some more, and she found she could cleverly schedule her instrumental lessons over the parts of the school day that she most wanted to escape.
And there she is, the other girl. We’re back at the beginning. I’m sorry about the detour, but it was important, and we can begin properly now.
Once there was a girl who wanted to be a music teacher. She played the piano and clarinet. She loved escaping to play them and wanted to spend her life helping others like her have that opportunity too.
The girl went to university to get the qualifications she would need.
She thought it would be like music at school, only better because music would be all the lessons instead of just some of them.
None of this happened to me of course. I didn’t have a bad experience studying music at university. I did not fall short again and again. I was not humiliated.
But maybe—third person—she was. That other girl.
Maybe she was told that it was a character test, everything was a character test, and that she was failing.
She remembered how after-school cartoons had tried to teach her that failure wasn’t a bad thing, real failure was not trying and supreme failure was giving up.
But it felt bad. And she was trying really hard and it wasn’t helping.
She didn’t really understand. But she thought she did, and what she understood was that she couldn’t give up. Not ever, no matter how much she wanted to.
So she tried to remember that she was a girl who wanted to be a music teacher and kept going.
She endured a whole year of not giving up. And then she attended her last lesson before the summer holidays and walked out and went home. That other girl.
And as she walked out she said good bye and happy holidays and see you next year.
Because she hadn’t quit. Everyone believed she would be back. She couldn’t even give up properly.
It didn’t start with a girl who wanted to be a music teacher, but where does it end and which girl does it end with?
Maybe it ended years ago, when the girl who wanted to be a music teacher got home at the end of the year wanting to be anything but a music teacher. She finally gave up, the most terrible and absolute way to fail. She changed degree (softly, safely via email), knowing that it was all character test, but not yet understanding that there is no grade.
It was not a decision she ever regretted, not even for a moment.
Maybe it ends now, with the little girl who wanted to be a novelist (or an artist) as a woman working as a writer and an illustrator. Perhaps, in the end, she did fight on, face her demons and emerge glorious.
But is it only okay that she failed then if she succeeds now? And success is a slippery term. She loves what she is doing and believes she is finally in the right place. But she isn’t making a living. And she has a chronic illness and cannot have another job to protect herself. And she is still frightened that she is not good enough, cannot be good enough.
(You have to be really good.)
Or maybe it ends someday yet to come, with a woman who sees her clarinet case and feels something close to curiosity. She will pull it out, wipe off the dust and put the instrument together. She will rediscover how the pieces fit, and then she will play again and enjoy it.
But that’s not quite the right ending either. And maybe nothing will be. I think that this isn’t the kind of story that ends.
Because she’s still walking out. That girl, that other girl. Somewhere, always.
She was caught like a mosquito in amber as she pushed open the door, with all the failure crushing down on her and no resolution. So she is still smiling—a tired, fracturing smile—and still saying nice things to the people who made her feel worthless. And she is still telling them she’ll be back next year. And she is always promising she can do better.
(She didn’t mean to lie, but she did and it is caught too).
The moment is suspended, and then that other girl is dropped back into my life, sending ripples in all directions.
I am always heading away from her failure. I am always heading toward he failure. I am always her, failing.
But I understand the cartoons a little better now. Failure isn’t a bad thing.
(Even when it feels bad.)