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.

Limb and life

It has been over two years since I last added to this narrative. My silence has not been for lack of things to write about, but rather the topic I felt it most necessary to tackle has seemed impossible to share.

Around three years ago, having thoroughly worn out the legs I’d brought from Canada, I started seeing a prosthetist in Australia. My challenge in finding a suitably experienced prosthetist has always been that the rotationplasty procedure (what I chose in the wake of my cancer treatment to give me the foot/knee articulation I have as an adult) is not performed in this country. In fact, they are performed infrequently enough in other parts of the world that the pool of people with rotationplasties in Australia is miniscule. I know of one other. There are probably a handful of people with a little foot (LF) across Australia. The prosthetist I chose to consult with was based at a clinic in Sydney that had a great reputation, and I knew they had fitted one rotationplasty previously.

My interaction with the clinic in Sydney did not go well. A repair to my existing Canadian-built prosthetic damaged its joints, causing hyperextension to LF, which led to swelling. Up to that point, I had never had any problem with LF in the more than 20 years since the initial surgery. And the new prosthetics they built never fit right – the swelling reoccurred. A reoccurred – despite numerous tear downs and rebuilds the prosthesis’ socket was never adequate. The swelling persisted, both in my toes and on the side of my ankle.

The clinic and I ultimately spent a year tinkering and I spent the same time period getting by. When the prosthetist finally said, “I don’t know what else to do”, I went to see a rehab specialist. After some months of waiting for an appointment, the specialist and his team (that consisted of an intern, resident, physiotherapist, prosthetist, and probably others) considered my case and… shrugged their collective shoulders.

That was when I first lost it, saying, “You’ve got to have something more to offer than that!” The specialist sent me for an MRI.

After five months of waiting on an MRI appointment, the scanned showed swelling of Little Foot’s ankle and over the toes (No sh*t… ? Sigh). No obvious structural damage was evident in the images, although apparently the quality of the image was ‘really poor’. It would have been nice to know that at the time – that’s two and a half hours spent in a whirring tube playing Jumble® with the word ‘Siemens’ that I’ll never get back.

I started seeing a different prosthetist last January. I met him climbing, as one might expect. His professional training was trained in Germany, where rotationplasties are at least performed. He had actually seen a couple of examples of the procedure before mine. And. He is extremely committed.

However, the challenge I present to a prosthetist of course has grown. Poor LF has now been swollen for close to three years. Every time the new prosthetist and I try a different socket the fluid shifts. It’s a bit like chasing a moving target where the difference between a bull’s eye and abject failure is millimetres.

I have tried everything I can think of to reduce the swelling – cold therapy, massage, lotions and potions of all sorts, elevation, compression, inversion postures… the cold and compression seem to shift the swelling temporarily, but it quickly returns when I’m wearing my prosthetic. I’m about to embark on a trial of a diuretic, which I will take while attempting to avoid wearing my prosthetic as much as possible. That’s sure to be a treat – I’ll be producing more pee and need to hop to get around. The final alternative, I suppose, will be to not wear my prosthetic at all until the swelling resolves.

Needless to say, I’m worn pretty thin. When I’m at my best I am grateful –  grateful for the medical resources to which I have access, grateful for my understanding of pathophysiology, grateful that I’m still very mobile, grateful that I can still climb with some ability, grateful that I can still get up and do my yoga practice.

But when I’m not at my best my mind drifts to a future that may or may not come to be. A future in which I need to find another job. One in which my financial security is compromised. One where my independence is under threat. One filled with physical regression as opposed to progression. A future where I cannot walk.

So yeah, when I’m not at my best, I worry this part of the journey is only beginning.

Member Benefits

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.

In The Beginning

I started climbing about the middle of 2007. I was working in the interior of British Columbia for a brief stint, and started going to a local climbing gym. I then took a two-day ‘Introduction to Outdoor Climbing’ course in Penticton at the end of that summer. After that I moved to Calgary and started hanging around one of the several local climbing gyms there. Same sort of deal as learning any individual sport as an adult – It could as easily have been tennis or golf lessons.

During these beginning phases, I was cramming my walking foot (the plastic one) into a climbing shoe. I know now that a foot designed for climbing is a different thing than a foot designed for walking, but at the time it was the available option. I’d never met anyone without a leg who climbed – I hadn’t met that many climbers, even and I simply assumed I was one of very few… (we prostheletizers can do the ‘assumption thing’ as easily as anyone).

I spent about a year and a half thrashing away, not being able to do much with my leg foot apart from employing it as counter balance and taking small steps onto bookshelf-sized holds. After one particularly frustrating day, I came home and Googled ‘prosthetic climbing foot’, or something similar. One of the top hits I received was a link to a thing called The Eldorado Z-Axis Climbing Foot. Its description mentioned Malcolm Daly and Paradox Sports. I decided to drop Malcolm an enquiring email and his response was to invite me to Ouray, Colorado to go ice climbing. In six weeks. So much for calculated career planning.

Meeting up with the Paradox crew in Ouray in the spring of 2009 was one of those eye-opening encounters. I think one of the consequences of limb loss due to cancer is that you end up in the ‘cancer crowd’, as opposed to the trauma-leading-to-missing-body-parts-or-loss-of-function crowd. They’re really quite different scenes. The majority of childhood cancer survivors reach the other side with limbs intact, and once you’re over the chemotherapy, I think there’s a tendency to move away from the community, as part of your own recovery process. As a result, I knew very few children without limbs during my cancer treatment days, and none afterwards. I attended one Champs seminar (think weekend health retreat only replace the meditation sessions with artificial limb show and tell), but I think I was too young and wrapped up in the whole treatment process to keep up the connections. By 2009, I was feeling pretty alone with my whole one-legged process.

When I went to Ouray I was all of a sudden immersed in this community of people who climbed, skied, cycled, ice climbed, snow boarded, paddled… They were getting out there. And while some ‘normals’ were invited along for the ride, most Paradoxians were missing something, whether it was a limb, a few fingers, or use of part of their body. Together we climbed frozen waterfalls. We ate. We drank beer out of somebody’s leg. All the usual climbing trip shenanigans.

They’re an inspiring crew. If you ever have the opportunity to go to one of their events I would suggest jumping on it – You’re likely missing more than they are.

The Cat Killer

Years with a prosthetic leg have provided me with some interesting encounters with curiosity.

During the end of high school I was a lifeguard and instructor at the local swimming pool. The first day of class was always an experience. From that vantage point, curiosity seemed to win out over the indoctrinated social politeness until about the age of 5 or 6. Frequently, the first class with five-year-olds would involve a brief circle of question and answer that went something like this:

Kid: “What happened to your leg?”

Me: “I was very sick when I was a little girl and the doctors had to take it off. They gave me a robot leg instead.”

Kid: “Oh, okay.”

And that was it. No further explanation required, and afterward the kids never seemed to take much notice. Sometimes there would be no words, and then one or two kids would slide across the circle to touch it, looking to me for permission that I always gave. I vividly remember this one class when the kids sat down in a circle and the little boy to my left slid right up next to me so that his right leg was touching my left leg, looked me in the eyes, and rested his hand on my leg without saying a word. He stayed there until I got the class into the pool.

I wrote about the curiosity of children in the post ‘One Leg, Two Eyes’, and how the response of others can shape that curiosity. One of the consequences of having a visible history of trauma is you see, on a social level, what we do to shape, and restrict, curiosity.

Curiosity has a cultural element. In places I’ve worked in Southeast Asia, including Sri Lanka, India, and Indonesia, curiosity seems to be something that is embraced, or at least not discouraged. I go for massages from local women because it gives me an opportunity to talk to them, and put money back into the local economy in exchange for a service (as opposed to stuff, see the post First World Problems). Without exception, all of these women have asked me what happened to my leg. The last time I was in Indonesia the masseuse put her hands on my leg while saying, “I’m sorry, I’m sorry, I’m sorry.” She ran her hands the length of my leg, and it was clear she had never seen anything like it before. Her curiosity was palpable, and I sensed there were many questions she wanted to ask. It seemed that only her English held her back.

Compare this to a recent encounter I had with a woman from work, here in Australia. We’ve known each other for months, and I’ve been to her house a number of times. She came to drop something off at my house, and I answered the door in shorts and a T-shirt. We had a conversation standing on the front porch, while she clearly made an effort not to even glance at my prosthetic leg. There’s no way she didn’t notice. She drove away without saying a word, and we’ve never discussed it since.

Humans are naturally curious beasts. Friendship and intimacy develop from mutual exploration into the human experience of others. I believe some of our ability to connect with one another has been lost in Western culture, and that this is, in part, because of the way in which curiosity gets smothered in favour of politeness, or social correctness, or our fear of asking too much.

A Primer On Prosthetics

A long-time friend who has been following this blog asked me: ‘Do you have the same walking prosthetic that you did back in Guelph? Or did you upgrade?’

His question made me think that perhaps I should write something about the nuts and bolts, if you will, of wearing a prosthetic.

I started patronizing Alberta Artificial Limb when I moved to Calgary in 2007. The process whereby I chose a supplier consisted of poking around on the Internet and making a few phone calls. When I spoke to Jon on the phone, he told me his company had a number of young people as clients, as well as a few people who were really active. Importantly, they had fitted a couple of rotationplasties. (It’s not unheard of to talk to a prosthetist that has never heard of a rotationplasty.)

I have no handy analogy to describe the process of changing prosthetists. Imagine that every shoe in the world, including yours, had to be custom made. Then imagine that there are maybe five dudes in every city of a million who can make them or repair them. That’s right – they can take as long as they want and they can charge what they want for their time and materials, and if it’s not working right…

No, wait. Think of it this way – imagine that you had to have your car measured and custom fitted by some local guy. The price is about the same. But then you find that the steering wheel always pulls you toward the gutter. And your passengers tell you that the seats are too stiff. Or, maybe it’s like getting married (I wouldn’t know, and no, please don’t email about that).

Anyway, it’s impossible to know until someone makes you a limb if it’s going to work out. You can talk to the prosthetist’ other clients (after you’ve practiced pronouncing it first) and look at some other limbs they’ve built, but each client is unique and I am very VERY hard on my prosthetics.

If I’m really honest with myself, this need to dedicate time and money to getting my prosthetics ‘right’ is what I find most difficult about having an artificial leg. The process of having new prosthetics built and current ones repaired is hugely time consuming. I keep two legs going at one time (you know what I mean) to ensure they’ll each last as long as possible. Which comes to around three years. The last time I had a new set built I was spending much of my time in Victoria, BC. I was still Jon’s client. I was making trips back and forth between Victoria and Calgary at my own expense. Each trip lasted at least a week, and we always ran out of time. It took a year to get our last set right. Jon had to do at least three teardowns and rebuilds.

Then there’s the expense. Bills for those last two came to somewhere in the neighborhood of $30,000. Prosthetics are an ongoing expense for me, and prosthetics coverage strongly influences where a starving post-doc is willing to live and work. Right now, though I’m currently in Australia, I’m still a Canadian resident and taxpayer and therefore most of my costs are still covered by Canadian assistance. However, these services and benefits must be delivered in Canada, which means I’ve become better at doing my own repairs and Jon has gotten real good at checking my alignment over Skype.

As in most war zones and locales suffering from civil unrest, prosthetic devices are not considered medically necessary in Canada. Which means that coverage is incomplete and not inclusive and varies by province. I’m fortunate to have ongoing help from CHAMPS, because otherwise I could be on the hook for thousands of dollars, or forced to accept prosthetics that won’t allow me to function to full capability.

Look at it this way – if I’m going to be your veterinarian, and an international animal health researcher to boot – give me a leg up – or I’ll let the old lady up your street poison your dog, and McDs feed your kids’ tainted McNuggets.