Category Archives: History

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

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’.

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.

Our Cancer Lexicon

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I believe that the language we use to describe the human experience shapes our perceptions of that experience as much as we shape the language itself. One of the areas in which I find the use of language quite disturbing is when we talk about cancer.

As an example, Jack Layton’s death from cancer was much talked about in Canadian media. The CBC ran an obituary entitled ‘Jack Layton’s legacy as a fighter’.

When he announced his diagnosis to the media Jack Layton himself said ‘I’m going to fight this cancer now so I can be back to fight for families when Parliament resumes.’

Now granted, my first-person experience with cancer was a long time ago. I had a total of 10 months of aggressive chemotherapy with surgery falling somewhere in the middle. Despite the passage time, one thing I am certain of is that the experience never felt like a battle, a fight, a war, a slugfest…. You get the idea. What I do remember is that when you get a diagnosis of cancer you are immediately swept into this torrent of events over which you have no sense of control, particularly as a child. In my case, the pathologists needed to argue over what type of bone cancer I had which meant there was a brief interlude between diagnosis and onset of treatment. During this time I can remember thinking about how my hair would fall out: one of the ironies of having cancer as a child is that you have no frame of reference for how bad the treatment is really going to be.

I do not remember anyone asking me if I wanted to pursue treatment. As a child, it was not my decision to make. Perhaps my parents were asked but it is one of those decisions around which you have little choice if you hope for your child to survive the illness.

In the case of a battle or fight or war at least one player has a choice about whether or not to pursue conflict. In the case of cancer, it is not like the cancer is making some sort of decision. And as the person it affects you are at the mercy of the disease in terms of the choices you have available.

Also, in the case of conflict I imagine there is an adrenaline rush, the sense that you are taking up some significant challenge or meeting a foe head on. I can tell you, I never felt like that. There was no rush. There was a sense of powerlessness. There were the tears on the days that I had to go to the hospital to be injected up with chemotherapeutics. I remember the nurses coming into my room in full isolation garb with the next bag of chemotherapy to be hooked up to the IV pump. Does that sound like a battle, or a fight, or a war, to anyone?

 © Cathie Coward

I think one of the major repercussions of the way we talk about cancer being a fight is that it implies that there are winners and losers. It suggests that on some level, if you die from cancer somehow the cancer has ‘won’ and you have ‘lost’ the battle. It ignores the fact that when you die the cancer also dies. It also implies that those who die of cancer do not fight as hard or as bravely or as fearlessly as those who survive.

If the experience of having cancer is to be viewed as a battle then the person with it is merely the landscape – that’s the best analogy that I have been able to come up with. On one side you’ve got the doctors, and their arsenal of drugs and treatments and symptom relievers and other modalities, while on the other side is the cancer. And the person with the disease is the landscape on which the battle goes down. The best you can hope for is that the landscape comes out the other side reasonably unscathed. And that after time to heal and rest it starts to look like what it used to. Regardless, the remnants of the battle remain and in many instances the repercussions of the fight that was waged become part of the landscape. And then there are the unfortunate instances where the landscape never recovers. But really the landscape has very little to say in the outcome and can only hope to see the other side of the fight.

The “D” Word

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At the age of eleven I was diagnosed with bone cancer. Treatment required a surgeon cut off part of my left leg. I’ve grown up wearing prosthetics, and today, at 31, they’ve become part of my normal. Yet in spite of this lengthy period of adjustment, I still choke on the word ‘disability’.

I avoid uttering the phrase ‘I am disabled’. I do not like attaching the “D” Word to myself. If necessary, I try to be careful to say that ‘I have a disability’. I’m prepared to to acknowledge that I have a disability, but I am very resistant to the idea that it is central to my person.

The Oxford English Dictionary defines the prefix ‘dis-‘ as ‘denoting reversal or absence of an action or state’. It defines ability as ‘possession of the means or skill to do something’. The World Health Organization’s definition almost makes me gag: ‘Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.’ I’m left with this sense of being discredited and dehumanized as a result of a physical trait that I cannot change.

My problem with the “D” word is the emphasis – it creates identity through that which is not. This conflicts directly with the way I approach living. I look around and see endless possibilities.

Yes, many things require persistence and a bit of brainstorming, but usually I feel more limited by perceptions of my prosthetic, and my fear that it will be perceived as a weakness or a fault, than by the prosthetic itself.

None of the accepted synonyms are any better. My good friend Malcolm Daly likes the word ‘gimp’. In fact, he often refers to ‘gimps’ and ‘normals’. I must admit, I was initially uncomfortable with the idea of being a ‘gimp’ but I have come to prefer the word to ‘disabled’. However, I think it is unlikely that ‘gimp’ will enter into common usage in the English language.

Let’s face it, saying ‘there is a physical part of me that deviates from what society defines narrowly as normal’ is a bit of a mouthful, and I have not been able to come up with a decent alternative to the word ‘disability’.

The “D” word, and to whom it applies, needs to be reconsidered. Let’s start that process now.