Plan C

C is for Cookie. And catastrophic failure. And Calgary.

Following on from the drama in my last post I feel somewhat obliged to keep the blogosphere in the loop. I started thinking of this next piece right after hitting ‘post’ on “Limb and Life”. Its title was going to be something like ‘What a Difference a Leg Makes’. I do not yet have the material for said piece.

So. Picking up where we left off: My current prosthetist cobbled a temporary leg together, to get me through while we built and tested the next big thing. This short term leg causes less swelling than any other prosthetic has in the last three years, though I wouldn’t call that a sought-after award. But it is enough to get me by, for a while.

After a long wait, the final solution leg I tried two Fridays previous was the culmination of two previous appointments: a casting, followed by a check socket and a second casting. This prosthetic was built with input from a prosthetist in the USA (I had reached out) who has quite a number of LF-toting clients. This prosthetic was to have been ‘The One’. It was not. Not even close – I took it off five hours after leaving the clinic, knowing full well it didn’t fit. Poor LF had ballooned even in those five hours. I had a look, took a deep breath, and went to bed.

After a fitful sleep I got up early in the morning and had a ‘spiritual awakening’. Which reads far better than ‘had a breakdown’. I called a long-time friend in BC and awakened in his general direction. Another friend was due to pick me up to go climbing. He stopped by and we agreed to meet at the crag. I didn’t say anything about my mood and was tasked with grabbing lunch while he made a quick stop for bolt glue. On my way I called him from the car and asked to meet him at the hardware store. I arrived just in time for another ‘awakening’ and told him I wouldn’t be able to join him that day.

I sat in the car. Since my last post I’ve started to actually talk to friends about my struggle with getting a leg that fits. But I didn’t want a friend. I didn’t want empathy. I was interested in someone who might actually be able to help in a meaningful way. So I called up Jon, my last prosthetist in Canada.

Here’s the thing about my prosthetists. There have only been a few of them, but I have spent days with all of them. And days and days and days with the most recent three – Jon, and then with the two in Australia. They become friends, and the good ones become incredibly invested.

So I call Jon, and he picks up after the third ring. He’s read my blog post and hears the strain in my voice immediately. He tells me to come to Calgary and he’ll have a go. He tells me to not worry, we’ll get it sorted.

A few hours later, I call my current prosthetist to let him know my plan. It’s not an easy conversation. I explain that it is not about him, that I have to go to someone who’s been able to make it all work before. I explain that if Jon fails, then I’ll know that it’s me and nothing a prosthetist can fix by tinkering with the fit. I explain that if Jon can’t make things work then I’m on to the next phase – a serious life reorganisation that will require a long period of time without the need to wear a prosthetic, necessarily combined with a different source of income. I try not to think about what that might look like. Another opportunity for awakening.

I drove home and spent the evening scheming, plotting, articulating, and attempting to keep my anxiety at bay. The current iteration of the plan sees me heading to Calgary in mid-September, with the hope of writing ‘What a Difference a Leg Makes’ in a month’s time. Cross your fingers for me.

Guys And Dolls

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’ll Be One In A Million If You Will Too

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’.