Category Archives: Narratives

Member Benefits

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Inspiring people in this world – they get pushed at me, or else I tend to get introduced to them. Over the past few years I’ve had the pleasure of meeting more than a few. Which is why I write about inspiration. Same as you, I talk about inspiration because I’ve been inspired.

Recently though, I happened to meet a guy with a humble kind of fortitude that is worth actually introducing.

I met John through a prosthetist in Australia that I visited for an emergency joint repair. The long-term fix required the welding of little bits of metal into the joints. The prosthetist turned to me and said “I could do this for you, but the thing is there’s a guy who lives not far from you who could probably do it better”, as he passed along the guy’s phone number.

I rang up John totally out of the blue, and he invited me out to his home-based industrial workshop. From what I gather, John is a jack-of-all industrial trades and design kinda guy, but without the engineering degree. His workshop is massive and full of all kinds of cool-looking stuff I can’t identify. From my perspective all that matters is that he’s got a TIG welder and he knows how to use it. The shop also contains a number of high-end racing motorcycles and the trailer to haul them around in.

John was in a motorcycle accident involving a car 12 years ago. He broke his back, hips, pelvis, and legs. His right leg was fractured in six places. As he recounted, “they told me I would never walk again, when all they really needed to do was take me right leg off” [under-the-breath chuckle]. They did take his right leg off, quite high above where his right knee would have been.

For the record, he walks. He also works in industry. He asked me if my leg ever hurt, and then went on to explain “…me leg only really bothers me when I’ve had a 12 hour day on a ladder”. He took a pay out after his accident. As a result all of his prosthetic expenses today come out of his own pocket. The obvious solution to this little challenge was to make his own legs. For real. Apparently John shapes his sockets by heating them up, putting them on, and bearing down on them while riding a stationary bike. Or something like that.

Some time ago, he got on a motorcycle again. He now races against ‘normals’ without wearing a prosthetic, rather attaching a platform to the right side of his motorbike to put his stump on. The brakes he moves up to the left side of the handlebars. He swims and bikes as part of his training. He was a bit under the weather the day I first met him: “You know, I’ve been celebrating the past few days because I won me last race. I’ll tell you something, it makes guys sit up and pay attention when they get beaten by a guy with one leg.” [that under-the-breath chuckle again]. His season just recently finished. John ranked second…Nationally.

One of the best things about having 1.5 legs is that I have an excuse to call up people like John. I’ve found that most people with artificial limbs are pretty forthcoming about how they manage to do what they do, I suspect because of all the often solidary trial and error one must undertake to figure out the technical stuff. It’s a cool little unofficial club. I mean, let’s be real, the cost of membership can be pretty high. But if you happen to find yourself standing in line, waiting to enter, I would suggest seeking out the members like John.

Don’t Buy the Big Bag of Dog Food

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When I was in Vet School, I had this professor who would occasionally drop the phrase “Don’t buy the big bag of dog food”. He didn’t intend his comment to be insensitive, or EVER used with clients. Instead he employed it as a tool to link specific disease conditions with a prognosis. For the record, his expression had the intended impact.

This came to mind when I was having a conversation with Cathie Coward, the woman who took the photographs of me you might have seen in my posts ‘Function / Form’ and ‘Our Cancer Lexicon’.

Cathie and I recently got together while I was in Hamilton visiting my family. We hadn’t been in touch for many years, until I emailed her about this SGL blog project. She and I agreed that perhaps some ‘twenty years later’ pictures would be an interesting undertaking, so we spent a day out together, during which I got on a climbing route or two and put myself into a few yoga postures. Cathie also recorded a bunch of audio for an article that was to be published in the Hamilton Spectator.

As a starting point to our conversation Cathie had me flip through Kate’s Story – something I hadn’t done in a very long time. She mentioned a picture I couldn’t recall, from a bone scan that was done around the time I was diagnosed. She recounted showing this image to a physician friend of hers while telling him about the Kate’s Story concept. She told me that when this man saw the image he advised her “don’t get too attached to this little girl…” the human medicine equivalent to “Don’t buy the big bag of dog food”.

I was taken aback when she told me about this conversation, and even more so when I looked again at the image that I hadn’t seen in so long – it clearly shows just how extensive the bone cancer was in my left femur. As a veterinarian today, my interpretation would have been similar to that of the physician back then.

If I think back I can get a handle on the idea that I walked a tenuous line during that period. There were times when I was really sick from the chemotherapy, and I suspect now that the situation was quite precarious.

Unexplainably, back then, the end of my life at a young age never really occurred to me. Though the experience left a lasting impression. Today, I feel acutely aware that, while life is not short, time is indeed quite precious. It makes me tap my one foot when someone is late for a date.

Alright, until next time… For the truly rabid fan-folk, here’s a link to the article I’m talking about and a few recent pictures that didn’t make the cut to the newspaper page.

 © Cathie Coward

 © Cathie Coward

 © Cathie Coward

  © Cathie Coward

Guys And Dolls

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A few months ago I was having a chat with Craig Demartino, one of my climbing friends at Paradox Sports. We were talking about the Mountain Games in Vail, Colorado that are held each June. The conversation went something like this:

Craig: It would be awesome if you could come to the Mountain Games this June.

Me: I would love to but sadly I’ve got prior work obligations.

Craig: Here’s the thing. We need more [disabled] women. Last weekend at the American Bouldering Series we had 6 competitors, 5 men and 1 woman. I don’t understand it. I meet lots of disabled women, just like I meet lots of disabled men. These women are really amazed by what we’re doing but, with few exceptions, yourself included, they’re not stoked to get out there.

Me: Craig, it’s your stubbly chin. But, let me get think about this for a minute because the language is really important… Umm… “To overcome is a more masculine approach while to endure is a more feminine approach.”

Craig: [Pause] You gotta put that on a t-shirt.

I have spent lots of time thinking about gender and disability. Craig’s observation is a common theme that runs through these thoughts. But I haven’t come up with much more in the way of explanation other than… men and women are expected to do disability differently.

There is a quote from a TED Talk by Brene Brown that nicely summarizes shame, social expectation, and gender: ‘For women, shame is “Do it all, do it perfectly, and never let them see you sweat…” Shame for women is this web of unattainable, conflicting, competing expectations about who we’re supposed to be, and it’s a straight jacket. For men, shame is not a bunch of competing and conflicting expectations, shame is one [expectation]: “Do not be perceived as weak.”’

I think, for disabled men, climbing can be an avenue to overcome society’s tendency to view you as weak. For women it’s different.

To climb is to sweat, and – at least for me – it’s an outward, visible struggle. In yoga, my teacher Jeff likes to call it the elegant struggle. But I can assure you that while I’m climbing there’s very little elegance and an extra helping of struggle, counter to Brown’s ‘social expectation’.

The irony is that climbing is inherently disabling, never mind gender or physical ability. Climbers at any level know all too well that if you are ‘able’ to climb every route that you attempt, then, well, you’re missing the point of the whole activity. You would be doing yourself a disservice by not attempting routes you’re presently disabled to do.

Only by attempting and failing can gains in ability eventually be made.

And besides, that’s where the laughs are.

I’d Like To Thank The Academy

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From time to time someone tells me I’m inspiring.

Now, don’t get me wrong. Being told I’m inspiring is really nice to hear, particularly in the context of my writing, where I feel like I lay everything out for all to see. Often, though, the compliment comes in the context of ‘you bike, ski, climb, practice yoga, surf, train hard… You don’t let it stop you!’ And yeah, it’s nice to hear in this context too. But always, in the back of my mind, I feel like a bit of a fraud.

The thing is – I’m not particularly good at anything athletic. I’m about as far from ‘a natural’ as you can get. It also never occurs to me that it, being my artificial leg, is something that should stop me. I engage in active pursuits because I want to, because they’re fun, and rewarding, and enriching, and challenging. Whenever I am trying something new, the thought that ‘this is something that I can’t do, or shouldn’t be doing, because of my artificial leg’ never really occurs to me. Looking back, I think the reason this doubt doesn’t interfere has little to do with me, and much more to do with a couple of key early influences, combined with good fortune later in life (such as my visit to Jeff and Harmony, described previously).

One of those influences was my mother. She is a fierce lady. The stories I remember her telling during my childhood were about her days at the University of Queens, where she graduated with an honors degree in mathematics. Her class included only the second, third, and fourth women to do so. I also remember her telling stories of the non-Caucasian men she dated in those days. Her mother encouraged neither the maths nor the men, any more than did the society of the day. Intentional or not, I think the message I took away, very much unconsciously, was ‘you don’t drink the Kool-aid just because it’s what you’re being offered’.

I’ve always been one to mull things over (a reasonably apt critical thinker? I don’t know). I suspect I started questioning some social norms unconsciously, and very early on. As time has passed this process has become more conscious.

So. After I learned to walk again, it seemed only logical that I would learn to bike and ski again. And, as part of my rehabilitation, I took up swimming, and it turned out I was all right at it. So why not become a lifeguard? What is it about climbing that makes it not possible with three limbs?… And so on. I never consciously went through this thought process, but I must have decided somewhere along the line.

I never got to pick my mom, or the country I was born in, or my diagnosis with childhood cancer. I happen to be a bit (well, maybe a lot) of an endorphin junkie, and I love being active. I’m stoked that people find me inspiring, because I love to be inspired in turn, and love that there are people out there doing things that I find inspiring, but I can’t deny that it all seems a bit… normal.

I’ll Be One In A Million If You Will Too

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For some reason, one in 50,000 is a number that has stuck in my head over the years. When I was diagnosed with Ewing’s sarcoma this was what my family were told was my chance of getting the disease. (What can I say, other than, “Thanks, medical profession, for quantifying the rarity of bone cancer in children”?)

I don’t remember in which context I was told the number, just the number itself. My mom actually remembers the number as being much, much larger. In reality the precise value of the number is irrelevant, and it’s only the magnitude that means much. Today, as someone who studies disease in populations, the idea of telling an individual or family such a figure seems strange. But maybe someone asked a doctor, and this number was the answer given.

The thing about chance, or more accurately risk, is that it is only really meaningful if you haven’t yet developed the outcome. Maybe you can change the risk of an outcome by avoiding certain known ‘risky’ behaviours such as driving or smoking, but it is only in very rare cases that the risk of an outcome can be eliminated. Or the risk factors may be things you can’t change, like sex or age. But, the thing is, quantification of risk becomes somewhat meaningless once you’ve developed the outcome. You’re ‘The Chosen One*’, whether you like it or not.

I tend to think about the chance moments in life as a series of decks of playing cards. We have a measure of control when we’re drawing the card, but there’s always a large element of chance to the whole process. And when it comes to the risk of uncommon things happening, in the vast majority of draws from the deck the uncommon doesn’t happen. Irrationally, it’s this same fact that serves as reassurance when a person goes swimming in the ocean in which somewhere there are sharks.

But sometimes what is very uncommon does happen. To be uncommon, but still occur, it has to happen to someone. It’s this fact that keeps the lottery tickets selling, though it contradicts the logic employed above.

At some point in life, something uncommon happens to just about everyone. And when thinking about that possibility, in conjunction with contemplating how we will respond to it, well, the possible futures are both endless and enriching.

 
*I’m always reminded of a quote from the original Buffy the Vampire Slayer movie. ‘Right. I’m the chosen one. And I choose to be shopping’.

The Black And Whites

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The pictures I’ve been posting from the time when I had cancer have a story behind them, namely Kate’s Story.

When I was at the beginning of chemotherapy treatment I appeared in a feature series of photos in the local newspaper, the Hamilton Spectator. A publisher noticed that initial piece and they approached the photographer, Cathie Coward, and my family about turning my experience with childhood cancer into a photo essay and book. This decision was one I made a long time ago, but I remember agreeing without too much deliberation. I think the idea was to create a resource for families with children diagnosed with childhood cancer. At the time it seemed like a good idea.

Over the course of the year I underwent chemotherapy and surgery Cathie Coward photographed me at all stages of the process. She was there during the times in hospital when I was being loaded up with chemotherapy drugs; she was there for my last morning on two legs; she even came to school with me on my first day back after surgery.

  © Cathie Coward

I very seldom look at the pictures – finding the ones to include in this blog has meant flipping through the images for the first time in years. And I have never read the text of the book.

There is a quote from an essay by George Steiner titled ‘In Bluebeard’s Castle’ that reads ‘It is not the literal past that rules us, save, possibly, in a biological sense. It is images of the past.’ My memories of that time are faint, and when the event I remember has been captured in one of the photos I’m not sure if my memories are of the event itself, or of that image, carried to the present.

When I look at the pictures I have a hard time seeing the girl in the photos as me. And really, she’s not me; the photos show the image of the girl who grew up to be me.

I initially chose not to read the book because it seemed unnecessary – I knew the arch of the narrative, and by the end of the chemotherapy I was done thinking about hospitals and childhood illness, and its impact on families. I will never read it now because of the fragility of memory – I don’t want my reading of the book to muddle for me what I remember of that time.