Why I’m still waiting for patience … and it’s still hard

I’ve never been a very patient person. I deplore waiting for things I really, really want. I catch myself thinking things like, But why can’t I just have what I want now? Like, now, now? As in this minute now?

This has got me into some trouble sometimes. I go after what I want, right away, and of course it never turns out the way I originally planned. And I’m always left thinking, But it’s what I want. Why can’t it just happen my way?

At this point I always have a little grasshopper moment (I swear this is from a movie, I just can’t remember which one it is for the life of me). As in an omnipotent voice speaking to me out of the sky, reigning down on me from a cloud, saying, Little grasshopper, you do not know what you need. You do not know the forces working around you that are preventing you from getting what you want. But I see you, and you will get what you want, eventually. Just be patient.

Whereupon I usually have a little hissy fit.

As I get older, though, I’m beginning to see the true wisdom behind patience (I still have hissy fits sometimes – believe me). The ultimate “lessons” that patience is often meant to teach still infuriate me, but I have become able to look back at periods in my life where I can truly say I was not ready for what I really wanted. Not even close.

Like now, for example. I’m essentially getting paid to write, and am meeting some pretty cool people in the process – some I’m reconnecting with, and some I’m meeting for the first time. This is the kind of job I’ve been looking for for the last ten years.

I couldn’t have done it ten years ago, though. I doubt I could’ve even done it five years ago. Well, maybe I could’ve – but I wouldn’t have been very good at it.

Coincidence? I think not.

*

So, I’m trying my best to be patient. I couldn’t have imagined the stars aligning any better for me to be in the place I am right now, at my little desk at MWG, writing my little crippled heart out for all those people out there (that means you). I have three months left at the Guild, and I’m not planning on leaving without laying out everything I have.

And all the stuff I want now, like right now? (Like, can’t I write the best thing I’ve ever written now? Why not?)

I know it’ll be there for me, at the exact moment I really need it. I can learn to wait for that.

Maybe. I might need a little help.

But I will, and I’ll survive. After all, I’ve made it this far. And it’ll be awesome, when I’m ready – but not a millisecond before.

“All great achievements require time.” -Maya Angelou

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How doing the thing that scares you to death can pay off

I’m a rather timid person. I’ve been this way for a long, long time; apparently I was a rather gregarious child, but that seemed to change – and change quickly – once I emerged from the Children’s Hospital when I was five years old after a two month stay. I literally couldn’t talk at the time, but even when my voice returned I was no longer the same person I had been before I became disabled. My body was different, that was for sure, but – as in daughter, sister, niece, cousin, granddaughter, friend – was also different.

I struggled with this new me for a long time; in some ways, in fact, I’m still struggling. I wonder about this new person that emerged – this new disabled person – and whether/how much she differs from the person I was until I was five years old.

I think I know the difference – I’m pretty sure that’s when the timidness crept in – but then, you never know. In some ways, it seems inevitable that my personality would change once I was no longer considered “normal” in society. But in other ways, I wonder if I was always meant to have the personality I have today, whether disabled or not. I certainly hope that’s true – I’m definitely a fan of who I am now, for better or worse.

But that gregarious child, the one who some part of me remembers being and yet my memory has blurred out the edges of – I wonder about her every once in a while. For better or worse.

*

One of my oldest friend’s mother’s – who also happened to be a teacher’s aid in my elementary school – recently described one of the first times I independently fed myself out of the hospital. It was chocolate pudding. I successfully spooned mouthfuls of delectable chocolatey goodness into my mouth, most likely with the aid of an adaptive spoon that I could easily grip with my semi-spastic right hand. I was then shown my reflection in a mirror; when I saw that I had chocolatey goodness all over my face, I immediately burst out crying. I laugh at that image now, as I know exactly what I must have been feeling at that moment: that it was so totally, utterly unfair that other kids in my class could eat chocolate pudding without looking like they had face-planted in it, and I, apparently, couldn’t.

I’ve often thought of that girl with chocolate pudding all over her face. She had no idea that her life would turn out so good – after all, she just wanted to be like everyone else. That girl didn’t know that her voice would come back, eventually, so that she didn’t always have to burst into tears when she couldn’t find the words to express herself (but she often did anyway). She didn’t know that she would come to identify with the stories she read on the bus on her way to school in ways that felt as real to her as time spent with family and friends. She didn’t know that she would graduate high school, and then university, with an innate sense of expectation and accomplishment that would spur her on to learn new things every day, often choosing to retreat into language over interacting with others.

She didn’t know that she would find a voice, another voice, which was ultimately more powerful than any other physical voice that came back to her. And she certainly didn’t know that, twenty-three years later, other people would be paying attention to what that voice had to say.

That timid little girl with pudding all over her face was afraid to put herself out there, because if she did, she was afraid other people would laugh or feel sorry for her. She eventually did put herself out there – slowly but surely – and some people did laugh, and others did feel sorry for her, but those reactions only made her stronger; they did not break her. And it was scary (it still is). She often wishes it was easier, and she still feels like crying sometimes. For the most part, though, the benefits that have come from putting herself out there have far outweighed the negatives.

She chooses to remember that little girl when she goes to sleep at night. She also didn’t know that that gregarious little girl – the one she thought had been lost – would come back to her one day.

That, really, she had never left.

“Maybe there’s something you’re afraid to say, or someone you’re afraid to love, or somewhere you’re afraid to go. It’s gonna hurt. It’s gonna hurt because it matters.” – John Green

Why doing more by doing less is the best lesson I’ve ever (re)learnt

Yesterday was my three-week anniversary at the Guild. It’s been a blast.

I also likely haven’t been this emotionally exhausted since… well, let’s just say I’ve probably blocked out that time period.

Writing is hard. Every writer knows this – and if you know a writer who says it isn’t, they’re lying through their teeth. Writing about yourself, though (or, at least, about a topic that makes up a large chunk of your identity), is even harder.

I expect a lot of myself. I know this; it’s a curse that I’ve been born with, and for all intents and purposes I’ve learned to live with. It’s what has got me through my Masters so far, so it can be a benefit. But it can also act as a virtual paper shredder; for every word I write, at least twenty more words have been turned over in my brain and evaluated for their usefulness. It means that writing, for me anyway, is more an exercise in literal and mental editing than in actual writing; it means that I often erase more words than I am left with in the end. It means my process often consists of writing a sentence once, taking a word out, coming back twenty minutes later to write the same word in again, only to take it out the next day, to ad infinitum, five days a week.

Which is exhausting. Especially when you’re a perfectionist, which I happen to be, so I’m never perfectly satisfied with the end product.

Oi.

*

MWG hosted a meet-and-greet event for me last week which involved a lovely mixture of cakettes, punch, and intelligent chatter that one can often only have when in a room full of like-minded – and often semi-introverted – fellow artists and writers (and really, what more can a girl ask for). I was asked a lot of questions regarding how the residency was going, and I answered honestly, for the most part.

In the afternoon, a Guild board member quickly popped in to get in on the proceedings (she was especially fond of the punch) and I related to her the rote of things I’m planning to accomplish during my residency. After I finished she answered, “That sounds like a lot,” complete with a knowing smile.

I’m not much of a touchy-feely person (I had only met this person once before), but I was compelled to hug her at that moment. I didn’t, but I should’ve.

However, her words didn’t leave me for days. As a direct result and after a long weekend of finishing two books, season three of Breaking Bad, a half-season of Veronica Mars, and more sleep than I’ve had in months, I’ve had serious time to reconsider my productivity this summer.

I can’t do everything. Part of me has always known this. The stubborn part of me, though, usually chimes in at this point to tell me that I should, and I should do it especially because society doesn’t expect everything – and, at times, anything – from me.

This week, I’ve decided to let my better half win out. Next week might be – and probably will be, knowing my track record – a different story.

But, fortunately, I’m surrounded by people who will, quite likely, pop up out of the blue to make me reconsider.

And that next unsuspecting person might just get a hug out of me.

“Our sense of worthiness – that critical piece that gives us access to love and belonging – lives inside our story.” – Brene Brown

Why I don’t think I’m inspirational (and neither should you)

I just watched an ingenious Ted talk by Stella Young. Everyone should watch this video, and I do mean EVERYONE (and everyone includes you, dear readers, as I am going to ramble on about it for the next few minutes of your coffee break).

I have a confession to make: I think the word inspirational has morphed into a phenomenon where people don’t even know what the word means anymore. I say this because I have been called inspirational, oh, probably fifty+ times in my lifetime. Not only is that a whole lot of pressure to live up to, but it’s also somewhat of a mind bender because I really haven’t done anything in my life that is inspirational.

You might say, though, “Of course you have! You’ve gone to university, you’re getting you’re Masters, you live on your own…not many people who are disabled can say that!” And you would be right. But just because I am disabled and have done all those things doesn’t necessarily mean that they are any harder for a disabled person to do them than a nondisabled person.

I’ve always found that the word inspirational is currently (and, I would argue, wrongly) used as a means of creating distance between yourself and who you are referring to as inspirational. The typical sentiment usually amounts to something like, “You are so inspirational, I could never be as (fill in the blank; some go-to adjectives are usually brave, courageous, etc.) as you.” But all that really does is say, “good on you for doing something I would never want to be in the place of doing in the first place.” And that can leave one feeling pretty shitty.

A good gauge I’ve found in figuring out what’s inspirational or not – especially when addressing someone who’s disabled – is to ask yourself, “Would I use the same measure of inspiration with one of my friends, or my family, or my boss, that I would with a disabled person?” If the answer is no, then you might want to reconsider your comment.

I’m really not trying to bash inspiration. Inspiration can be wonderful and immensely fruitful at times. All I am suggesting people do is have a long hard think about why they might classify someone as inspirational and, perhaps most importantly, only use the word when the occasion is truly warranted. If the reason is based primarily on the fact that that person is disabled, or in some other way defies the norm, then they aren’t really being inspirational; they’re merely working with what they have. Working with what you’ve been given shouldn’t make one praise-worthy; it’s called living your life.

“…frankly, I’m not inspirational. I’m damn boring, if you ask me, which you rarely do. I worry about paying the rent, eating too much chocolate, and finding telltale wrinkles – sound inspirational yet?” Harilyn Rousso, Don’t Call me Inspirational

Nineties nostalgia

I have a confession to make: I went to my fifth Backstreet Boys concert last night and it was beyond awesome.

Before I lose many of you, let me just preface that by saying this: a good 75% of the reason I loved the experience so much was because it took me back to a time in my life where things were much, much simpler. That time was the good ‘ole 1990s.

Even though I was born in the eighties, I really grew up in the nineties. During that decade I cried at least twice a week over my inability to make my hair look exactly the way I wanted it to (and subsequently blamed my poor mother for the same), I found out how heart-wrenching teenage friendships can really be, and I was forced to grow up with a body that many people, including myself, never expected me to have.

And even though those things sound relatively depressing, each one of them truly made me into the individual I am now. The fact that they took place against the backdrop of the 1990’s where boy bands and mini-backpacks ruled, stirrup pants were in, and every preteen girl disturbingly wore a gold pacifier hanging from a leather thong around their neck makes those nostalgic memories – the good and the bad – seem all the more sweeter.

In the nineties I didn’t know people were harmfully cordoned off into groups depending on their sexuality, race, ethnicity, gender, age, or ability and were treated as different and even potentially dangerous. It was a time of relative bliss, in a way; not that I’m not a better person for being aware of this now, but there are definitely benefits to not knowing that you, in fact, belong to one of those groups identified as Other.

It also remains a unique mystery to me (after all, I love paradox) that the same decade that introduced grunge and punk also introduced pop music. Maybe if I was a bit older I might’ve fallen over myself for Nirvana instead of the Backstreet Boys, who knows. It does make sense to me, though, that my preferred music genre in those years consisted of fluffy lyrics and synthesized drum beats that effused happiness and, overall, the desire to love others (even though, admittedly, the “goal” was very narrowly defined as a heterosexual relationship that would fulfill one’s every desire). I guess my cynicism took until my early twenties to kick in.

But, pragmatically, I’m ok with that.

In addition to my throwback to the nineties last night (during a time when I screamed and danced my head off for two hours straight and then fell into bed and didn’t get up for twelve hours), I’ve also been watching (and unabashedly enjoying) Party of Five on Netflix. In addition to the unadulterated joy that comes with being able to access one of your favourite childhood TV dramas at all hours of the day, wherever you are, and binge watch five straight hours of Scott Wolf’s unbearably adorable dimples (not to mention Matthew Fox’s floppy ‘do), I can be transported to a time period that really does seem like it was too good to be true. The fashion trends were hilarious, the corny dialogue glorious. And, ultimately, the plot line of being invited into the lives of five of the most beautiful-looking white kids in America where the oldest “adult” was in his mid-twenties has a brilliant “the grass is greener” feel to it.

It’s a place I would go back to in my imagination, over and over, forever. Realistically, I’m glad those times are over.

But to remember them is priceless.

“Childhood is measured out by sounds and smells and sights, before the dark hour of reason grows.” – John Betjeman, Summoned by Bells

Disabled writer: fun facts

I’ve been thinking a lot lately about whether being a disabled writer distinguishes me from any other writer. Here are some fun facts that might provide an answer (with the emphasis on fun):

1. It takes us longer to get anything done, and writing is no exception.

I, admittedly, avoid using the bathroom when I am writing – or, should I say, I watch my liquid intake very carefully when I am writing. Going to the bathroom can easily take 10 minutes for me (especially when I have skinny jeans on) when it might take less than 5 minutes for everyone else. So I try to limit these excursions as much as I can.

2. But with that said, we go to the bathroom just like everyone else.

Self explanatory, but it needs to be said. For most of us, give us a bar on the correct side of the toilet and a door wide enough to close after a wheelchair, and we’re good to go. Too much to ask? I think not.

3. We can’t eat/snack/binge on anything.

See number 1. I have literally been in the middle of writing papers and have looked at my clock to find, to my surprise, that I haven’t eaten in 3 or 4 hours. Also, if food’s in front of me, I’ll eat it. So if there is no food in front of me, that can work in my favour.

4. We like to go for walks during a particularly mean writer’s block.

“Going for walks” isn’t just an able-bodied thing. We do it too, and yes we call it the same thing.

5. We often do our best thinking in the bathroom.

See number 2. When you’re in there for long enough, your mind wanders until you find yourself running back to your laptop with a brilliant idea that, annoyingly, just couldn’t wait until you were back in position again.

6. Sometimes the best answer/solution lies within words that someone else wrote.

When I’m really stuck, I’ll open a book (not a school book).

7. CBC Radio One is a good companion, even if it’s barely on in the background.

Who wouldn’t want an intelligible, witty, chatty, constantly available bff whispering in your ear at all hours of the day? 

8. Windows are good.

Even when it’s snowing. Trust me on this.

9. Pictures are also good.

They can remind you of a time when you have been and will again be unchained to your word processor.

10. Cut-off times are even better.

Before you start crying from frustration, know that you’ve done enough for the day and go get a craft beer with your other, living, bff.

“I hate writing, I love having written.” – Dorothy Parker

 

Why we need to pay attention to the words/narratives that surround disability

I was at a semi-swanky luncheon fundraiser for a disability organization yesterday. My mom invited me, because she knows important people, and who can really say no to wine at 11:45 am on a Tuesday, am I right?

The entertainment was a comic. Now, I’m slightly skeptical about comics in general, but I was willing to give this one a shot. Everything was going relatively fine until the moment, about ten minutes into his act, when he made a cripple joke (yes, he actually used the word “cripple” as a derogatory in 2014). For me, everything went downhill from there.

My first reaction was, “Does he not know his audience at all? Like, AT ALL, at all?” A disability organization had asked him to provide entertainment and he thinks it’s ok to make a crippled joke in the middle of his act? REALLY???

Now, some of you, dear readers, might be thinking, “But the name of this blog is called ‘mylittlecrippledheart,’ so how can you get your shorts in a twist when you are relatively ok with using the word cripple to describe yourself?”

And the answer to that one is that I am using the word as a form of empowerment. A stand-up comic (who was male, white, and heterosexual, by the way, so he had loads of privilege on his side) who uses the word “cripple” to differentiate people like me from everyone else on a Tuesday morning in downtown Winnipeg isn’t the same thing as me using the word to describe myself proudly.

*

I admit I can be a little hung up on language. As a previous English major, language surrounded me as I was taking my Bachelor of Arts. Oddly enough, it still surrounds me as I take my MA in Disability Studies. But, unfortunately, the language surrounding me in my studies now is full of negative connotations.

Which gives me a bit of a headache, to say the least, because – at my core – I am a lover of language. But when the language that is used most often to describe my disabled friends and I consists of some of the most derisive language aimed at dividing the disabled from, let’s admit it, everyone else considered “normal,” I can’t take that sitting down. (See what I did there? It’s funny because I’m sitting down almost 24/7; and it’s ok to laugh at those kind of jokes, really. And that is an instance where language can be used as empowerment, dear readers.)

So, I’m essentially a lover of language who cannot deal with the negative language surrounding disabled people. Which may put me at odds with myself, sometimes. But that’s ok, see. Because, also at my deepest core, I am a lover of juxtapositions (I am a nerd, after all). Contradictions are what make humans, human.

I’m not going to write a letter to the comic in question or the disability organization to urge them to perhaps err on the side of caution when inviting a comic to be their fundraiser entertainment, by the way. Some of you – maybe even most of you – might possibly think I should. One of the most important lessons I’ve learned as a disabled person, however, is that you have to choose your battles carefully; otherwise, you’ll burn out quickly. There’s so much that gets my blood boiling about how disabled persons – and marginalized people in general – are treated daily. If I were to write a letter, I’d possibly be regarded as a too-sensitive person who won’t be paid attention to because my concern would be about the representation of a minority group of society who hardly gets any attention at all (and when we do, it’s more than likely the wrong kind of attention).  And, truthfully, I have so much more going on in my day that I would like to put more positive energy into.

So, all I can really do is hope that someone comes up to this comic after he makes another cripple joke and says, “Dude, it’s 2014. No one uses the word cripple anymore – that’s not cool.”

“Sticks and stones may break my bones,
but words can also hurt me.
Stones and sticks break only skin,
while words are ghosts that haunt me. ” – Barrie Wade, “Truth”