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.

AWKWARD Moments

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So yeah, I’ve gotten pretty good at keeping my artificial leg under wraps. I don’t feel nearly as compelled to hide it as I used to be, but there are still those in my daily life, particularly at work, who I’ve never raised the subject with. When they haven’t made any comment, I can only assume that they don’t know about ‘it’*.

One of the consequences of this charade – if you will – is that either the situation arises, or I develop a close enough relationship with someone, that I feel it’s necessary to tell them. Almost always, I feel apprehensive when this time comes.

It is rare that I get a good lead-in. I mean really, how often do any of us think to drop the question ‘any major childhood illnesses or artificial body parts we have yet to discuss?’ Since the topic is something that doesn’t naturally come up, I always feel like I’m raising it out of the blue. My default opening is ‘there’s something I want to tell you…’ Yeah, I know – I’m setting myself up for awkward out of the gate. I’m open to suggestions.

Then there’s the looming discomfort about what reaction my revelation is going to receive. Generally, these fall into one of three categories; The first is the “I know”. The second being the “oh…”, followed by a look of confusion, followed by awkward silence. I still don’t know how I’m supposed to dispel the tension.

The third category is the “…Really?” My favorite variation on this theme coming in the form of “you’re joking!”…which I can’t help but find entertaining. Who makes that joke?

(I have contemplated making that joke: “No shit. After I lost the limb in a freak shark accident, I put myself through grad school by contracting my leg to mule contraband. No border guard wants to touch it.”).

Sometimes what follows is a bit of Q & A. Other times the conversation moves on to a different topic. Generally, I don’t volunteer many details. I believe if someone is interested, they’ll ask.

I struggle. I am by nature quite introverted. Decades on, telling someone about my artificial leg still feels like I’m opening up a part of my life that I’m very private about… or was private about, until I began this blog.

*Do I say ‘it’ or ‘them’ as I’ve got more than one leg to wear?

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’.

Short Note

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For 15 years I almost never wore shorts. And I am selective about the circumstances under which I wear them. I always wear pants to work, where shorts are common attire. When out in the small town where I live, I typically wear pants. But, these days, when I climb, I almost always wear shorts. I do this because it’s too hot for pants most of the time, plus, it allows me to use the socket of my prosthetic to move up as I climb.  Also, I climb on a customized foot that is half the size of my right foot and I swap feet before climbing, which means that my leg is really no secret out at the crag.

However, it was not always this way. When I first started climbing about 5 years ago I climbed only in pants. I bought my first pair of shorts in a very long time about four years ago.

I chose pants as a teenage, as I was entering high school. It was a long time ago, but I think my decision had as much to do with my search for normalcy as it did with attempting to conceal my prosthetic. At that point in my life I’d spent over two years undergoing chemotherapy, surgery, and smiling bravely for concerned adults. I’d had enough of being gawked at. I was starting high school in a different city, which meant a whole new group of kids I’d never met. I think, like most adolescents, I just wanted to fade into the background.

Today, I continue to choose pants over shorts, mostly. I suppose this is because I want some control over my first impression on people. My gait is good enough that unless a person pays close attention, my artificial leg goes undetected. There are other things that I do. Without thinking. Almost.

When I sit with people on a couch, I will sit to their left so my ‘real leg’ is closest to them. And I will often walk just behind people if I’m concerned about appearing awkward, such as when walking on uneven or sloping ground. There are people I have known for years who don’t know about my leg, and in some instances they have found out only because I’ve told them.

We all do it: We form associations with the people that we know according to particular characteristics. These characteristics can be physical or associated with personality. We describe people to others according to these characteristics. And I suspect most of us have had the thought ‘I don’t want to be known as the [blank] girl.’

I am comfortable with my artificial leg, but I am uncomfortable with the idea of being described according to it. I’m happy to be ‘the tall girl’, or ‘the blue-eyed girl’. Just not ‘the-one legged girl’. And I’ll take pretty much anything over ‘the disabled girl’.

I listened recently to a podcast about an actress who manages this sleight of hand better than I. I’ve included a link to it here.

One Leg, Two Eyes

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There are a variety of reactions I get to my prosthetic when it’s out in plain sight. There is this reaction that happens with parents and children that I struggle with, and it happens with enough frequency that it is worth comment.

On one recent occasion I walked into a fruit shop on a Sunday afternoon – post climbing, clad it shorts, hiking boots, a T-shirt, and more than a bit of dirt. The place was busy, as expected, and there was a mother, and her child of about four years of age just down the aisle from me when I walked through the door. The child looked at my leg, gave her mom’s skirt a tug, and pointed. The mother pushed the child’s hand away and then used her other hand to turn the child’s head away from my direction. The child kept craning her head to look back, while the mother’s hand continued to oppose the turning of the child’s head. These types of interactions happen fairly regularly. There is one time I remember quite distinctly when the parent loudly ‘shhhhuusshed’ the child while standing no farther than five metres from me.

Over time I have come to try to connect with the children involved in these interactions. I see the parents, who I believe are suspended in fear and embarrassment, as being beyond my reach. On this occasion I made eye contact with the child and smiled, in hopes of acknowledging her curiosity and letting her know that I am a person much like her, just a little less symmetrical.

When I’m feeling less tolerant I am tempted to walk up to the parent and say something to the effect of ‘I may have one leg but I also have two eyes, and they work just fine. And just so we are clear, I see you.’

There exists no social script for such scenarios. I walk away from these encounters feeling disheartened. I’m not sure what the ‘right’ reaction is to a child’s curiosity about a physical characteristic that deviates from normal, and I doubt there is a ‘right’ reaction, but I believe that this kind of encounter sheds light on the pervasiveness of stigma in our society, and the ways in which it is fostered in children. I often wonder if there is any further discussion when these families go home.

My hope is that this blog helps to counter some of the stigma that has become so common in polite society. After 20 years with a prosthetic leg I have come to believe that by failing to talk about it openly and that by concealing it in public, I help maintain that stigma. I do not want that to be my contribution.

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.

Seminal Moments

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We all have them – those points in our lives that we consider in hindsight and go ‘wow, my life would have been completely different had I not…’

One from my recent past that comes to mind is the day I walked into my first Ashtanga Yoga Mysore class taught by Jeff and Harmony Lichty.

Hindsight, as they say, is 20/20. To be clear, I had no idea what I was getting into.

What led me to yoga was years of hip pain. Years of experience clouding, constant, hip pain. I had tried everything – chiropractic, massage therapy, active release, acupuncture. All modalities alleviated my discomfort to some degree but the relief was always transient. There had been times when I was having something done to my hips two or three days a week just to keep the discomfort manageable.

When I moved to Calgary in 2007 I had limited health insurance through the university and therefore I knew that any treatment I pursued was going to be paid for mostly out of pocket.  And I was tired of spending my time going back and forth to appointments. I had begun to think about what was going to happen to my hips as I got older and figured it was time to try something else.

At the time I had barely dabbled in any kind of yoga. I had followed a couple of DVDs, been to maybe a couple of led classes, but that had been it. I did what everyone does in this day and age when I moved to Calgary – I consulted the Internet and found Yoga Shala Calgary. I read a little bit about Mysore style yoga, looked at the schedule and thought ‘Oh, that will work. Classes are in the morning so I can go to the gym and study in the afternoon.’

So one morning in September 2007 I walked into Yoga Shala Calgary and met Jeff and Harmony. At that point they were teaching in Calgary having returned from another stint in India and both had been authorized by Shri K Pattabhi Jois.

My earliest impression of them was that they did not see my prosthetic as something to overcome, they just saw what was possible. That first day they asked for a show and tell and were enthusiastic and excited about the fact that I had come in. I did not get a whiff of uncertainty or hesitation from either of them, and that is an approach to teaching and learning that I think many would say they try to adopt but few really achieve. And so I started going.

It took some time, as I think it probably does for most, to incorporate my yoga practice into my routine but after a few months I was pretty regular. And I can remember when the hip pain really started to change. Toward the end of 2008 I spent a month in Goa practicing with Jeff and Harmony. Before travelling to Goa I had been in Sri Lanka for two months conducting research as part of my PhD. Prior to that time, a three-month stretch with no treatment on my hips would have left me in agony. But for the first time in years I wasn’t. I practiced close-to-daily on my own in Sri Lanka and then six days a week in Goa and I was hip-pain free.

I still have flair ups from time to time, but they are very seldom and nothing like they used to be. And while the lack of hip pain has been life changing and truly a blessing, yoga has also brought many wonderful experiences and connections to my life.

Function / Form

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Kate changes dressing_1 © Cathie Coward

As you can see in the picture above, I do not have what you might call a ‘normal’ amputation.

I was diagnosed with Ewing’s sarcoma at the age of 11, when a tumour was found at the end of my left femur – the long bone of my thigh – in the growth plate closest to my knee. Soon after diagnosis I started chemotherapy, and was given the ‘choice’ between a joint replacement and an amputation. Specifically, a rotationplasty.

A rotationplasty is a salvage procedure that is done to save two joints, and leave the patient with a functional knee. Essentially, two incisions are made, in my case one high on the thigh and one just below the knee. The middle bit gets discarded, and the calf and ankle are rotated 180 degrees and reattached so that the ankle becomes a functioning knee.

Even now, I look at this picture and go ‘Man, that does look weird’. And it does – it still looks weird even to me, and I’ve had 20 years to adjust.

But, I’ll tell you what: It is functional. Because the foot is a naturally weight-bearing part of the body, I can wear my leg for 20 hours without issue. I’ve hiked up mountains. I’ve biked up mountains. I can stand for as long as I need to. I can surf and climb and practice yoga. And work as I need to.

When I had to make the choice between knee replacement and rotationplasty – at the ripe, old age of 11 years* – it was surprisingly easy. Shortly after I was diagnosed, I happened to share a hospital room with a girl who’d had a bone tumour in her knee. Following joint replacement, she was back in for yet another surgery. When you undergo this kind of intervention at a young age, by necessity they remove the growth plates around your knee. As a result, the affected limb grows much more slowly. This young woman was back in hospital to have her long leg shortened and her short leg lengthened… again. I could see she had difficulty walking, and that her shoes had to be markedly different heights to accommodate her leg length difference.  Around the same time, I met a young man with a rotationplasty whose family my mom had contacted through a local charitable organization. He had needed no additional surgeries, and was cycling and playing baseball regularly. Though I was only a couple of months into chemotherapy I’d had my fill of hospitals. The choice seemed obvious – I wanted function over form.

But, it’s not that simple for everyone. I recently met a mother whose daughter has a congenital condition that might best be treated with a rotationplasty. Her alternative is to leave the limb as it is. When I met this mother – I did not meet the daughter who was not yet three – I was quick to tell her how able I was, how functional I was, how happy I was with the outcome, and how I wouldn’t change a thing. Her questions focused around skirts and boys.

 
*The G. Gordon Liddy offering of “I’ll break your legs or steal your girlfriend – your choice, Mister”