The beginning of everything

Well, blog, I’ve been neglecting you.

Calling this post ‘What A Difference A Leg Makes’ would be faster, but it would spoil the suspense. Oops…

It has taken time to find energy to write about a process I have found so taxing. It has been three years of doubt and pain. And since getting back from Calgary I’ve been keen to get back to the more enticing parts of life and take a break from the anxiety caused by uncertainty regarding my mobility. Although the stress was most acute in the six months leading up to my departure, it had probably been creeping up on me for years. So now I feel weary and uninterested when it comes to thinking about the mechanical aspects of bipedal life. And a bit tired about writing about it, too. There have been cliffs to climb. Waves to catch. Celebrations to attend. And, no surprise, a great deal of work to catch up on.

My last post takes us up to mid-September, when I travelled to Calgary as planned, hoping to fall back on the builder of the last legs that worked for me. Jon’s timeline was remarkably optimistic – he was thinking to send me home in two weeks. I, on the other hand, was gunning for any period of less than four weeks. The process ended up taking 18 business days. And yes, now I have a leg that fits better than anything I have had in over three years.

I landed in Calgary on a Sunday morning. Jon took a cast of LF that afternoon. Poor LF, after 15 plus hours of flying she had earned the designation LEF, little elephant foot. I was on a trial leg in three days, the first of four versions we went through. When I left for Australia again, I took home the fourth trial leg to surf on and a final ‘finished’ version for everything else. I will longer-term test this one to ensure all the kinks are worked out. Then Jon can build a final surfing version. Importantly, he worked out a way to essentially replicate the final version of my socket from a cast of LF, as well as the upper section of the leg, which is always the first bit to wear out. Genius. Pure genius.

It was a long 18 days – I think for Jon more than me, perhaps. There were numerous long days into evenings in the shop. Many cases of two steps forward and one step back. But we got there.

I would like to say that it’s all rainbows and butterflies in the world of LF. My joint has definitely improved and I’m more comfortable in the socket than I have been in a long time… Yet there are still uncomfortable areas of pressure. The swelling has improved but persists, which comes as no surprise given it’s been present for over two years now. Because the swelling changes throughout the day, so does the fit of my leg, which means getting it to fit just right is like chasing a moving target. I’m in the process of making some adjustments, but I am wary of making any dramatic changes because what I have is by far the most functional prosthetic I have had in years. I don’t want to make the swelling worse or make a change that can’t be reversed.

Being at a distance from Jon is a challenge, but technology makes more possible than I imagined. We recently spent a couple of hours on Skype working through some of the nitty gritty details, including modifying the fit of the socket. I would send photos, he would annotate them and send them back. He was able to look at my alignment and describe for me any adjustments to make. So, I’m confident we can make most things work with me being in Australia and he in Canada, requiring only the occasional trip to Calgary for a new cast.

I am weary of the process, but I am simultaneously awash with gratitude for Jon and his efforts, as well as the time his wife and children sacrificed so that he could get me sorted. He is everything one could ask for in a clinician – highly skilled, diligent, thoughtful, humble, attentive, and reassuring. His attention to detail and cautious approach were critical to the success of my visit. He leaves me feeling heard – even with my sample size of one we share a dialogue as opposed to a dictation. He has given me back my mobility, for which I am profoundly grateful and indebted.

 © Joanne Liu Images

Surf Salvation

I practice yoga. I balance on my left leg every day. This training involves trying to stand with both hands on my hips while straightening my right knee, pointing my toes and lifting my leg up off of the ground. Seven years ago I couldn’t really balance on my left leg at all. Now, on a good day, I can keep both hands on my hips, but it has taken a long time and almost daily practice to manage even this feat.

I’ve tried all sorts of tricks and toys to work on it. Wobble boards, wobble cushions, and Boscu balls fall out of my closet. Or else trip me up as they lie around the house, more effective in neglect than they ever were fresh from their packaging. At the gym, I make sure there are exercises like lunges that challenge my left side. And I’m still attempting to walk a slack line, though I haven’t had much opportunity for dedicated effort of late (Takes a month long road trip and a campsite full of willing spotters, most of whom are auditioning for a place in your tent). Good balance is critical to things like climbing and surfing, and yet it is something I’ve always struggled with.

A little while ago I had one of those light bulb moments that gave me a better understanding of why I struggle, I mean, apart from my lack of a knee and appropriately placed ankle for proprioceptive adjustments and feedback. Other people I’ve talked to who have lost* parts of limbs over their lifetime have a sense of self where the missing limb was, or is supposed to be. They say they can still “feel” where their missing limb is in space, even though it’s been replaced by a polymer version. For me, any strong sense of self ends at the toes of my “little foot”. I’ve visually taught my brain some awareness of where my prosthetic is, but it seems rudimentary in comparison.

This absence of this sense gets tricky when it comes to things like learning to surf. I have worked out a two-step method of standing up that requires – among other things – that I put my left foot along the midline of the board. The easiest way to get my foot in the right place is to look down, but I’ve found that looking down while on a moving surfboard… lowers the probability of successfully standing up. So I’m trying to train the motor pattern in such a way that I don’t need to look. Which of course means I miss. A lot. And therefore drink a lot of salt water.

It IS coming though – standing up on the surfboard. Slow but incremental progress. I try to remind myself of this improvement when I’m struggling onto the beach with a belly full of seawater. One day, like Annette, I’ll be ready to pitch orange juice and put my remaining foot in my mouth on television, just you wait.


*I always have a little chuckle at “lost” in this context. One says, “I lost my leg” just as someone else might say, “I lost my wallet”. Yet the processes underlying the two events can be quite dissimilar. Okay, I suppose a shark could bite off your wallet.

When In Rome

I started thinking about learning to surf while I lived on Vancouver Island. However, the need to finish a thesis and my lack of natural insulation held me back at the time. When I arrived, bound thesis in hand, in Oz, with its warm waters, it seemed like time to give it a go.

When starting on any new activity these days, I think about maximizing my current set-up. As a less-experienced monopod I would try to make whatever I was using at the time work for whatever – biking, riding horses, climbing – but I’ve since learned that it’s far easier to think about the mechanics of application early on. I gleaned enough from watching people surf to realize that a foot fixed at 90 degrees was likely to get in the way when stepping through, and that balance was going to be critical. My solution was to take a shower foot (looks like a flat-bottomed plunger), get Evolv to put sticky rubber on its bottom, and voila, a beta-edition surf foot. Worth trying. And hey, it turns out that a foot without toes is better suited to walking in sand, too – an unanticipated bonus.

Of course, it is rare that a well-conceived plan unfolds smoothly. The sticky rubber surf foot worked great when I was on a foam board learning, but as soon as I stepped onto a wet, waxed, fiberglass board it would slip off like the board was, well, made of glass. However, after a couple of goes I was able to solve this little hiccup by putting a neoprene sock over the plunger foot.

There remains the ongoing challenge exposing an object held together by various bits of metal and adhesive to salt water. The adhesive is okay so far, but corrosion of the joints is an ongoing concern. Although they’re made of stainless steel, they seemingly hate the salt. As a stopgap, a few squirts of canned waterproofing protectant-type stuff helps a treat, as does an immediate post-surfing bath and regular cleaning and lubricating. I have hopes of seeing the release version of a dedicated ocean dweller in the not-too-distant future.

It’s easy to get discouraged by the potential for failure, and the fear that the mechanics just won’t work, a similar experience for mono- and bi-pods all over the bell curve, I suspect. As someone without much athletic… aptitude – it takes me quite a while to learn something new. I’ve decided to focus on learning to do things that I find innately compelling. The power of the ocean is palpable, and being immersed in it is totally consuming. The other side of the coin for me has always been the activity of running. I don’t run. I wouldn’t say that I’m unable to run, but I didn’t run after my surgery and when it came time that I was strong enough to do it again I needed to totally relearn the motor pattern. I’ve often thought it would be a good thing to do, but let’s face it; something being a “good thing” is never sufficiently motivating. I think I’ll stick to surfing, and hopefully stick to my surfboard too, for the next while.



Above are photos from a recent outing down the south cost. Please note that they do not portray with any accuracy the standing up success-to-failure ratio, and that the final photo below illustrates the stance most commonly assumed.



One Foot Two Foot Red Foot Blue Foot

Some people are preoccupied with having shoes for every outfit. For myself, I have dedicated a fair amount of thought to the question “have I got a foot (or leg) for that?”

I long for a day when I have a leg for just about every function: every-day blundering, yoga, a few for climbing, sticky-waterproof for surfing, cleated for cycling, and maybe a Johnny-5 type leg for more formal occasions. However, these days I make do with two – an every-day leg and a sports leg. The latter I end up wearing most of the times, and as a result it really takes a licking.

My choice of leg is usually dictated by function. The lower half of my every-day leg is covered in high-density foam, which means it’ll pass as normal in a pair of pants. But the deal with Plain Jane Leg is like the deal with your iPhone – you can’t get it wet, and its foot component can’t be changed out regularly. So, for surfing, I’m on to Sporty Leg.

“So why not just always…?” Because. I tend to break the toes off of the foot shell on Ol’ Sport when practicing yoga. Yoga has to happen on Jane.

There are times I opt for No Leg. I’m fortunate in that I can tolerate a prosthetic for long periods, and therefore rarely “have” to take it off.  There are times, though, when I can’t be bothered to put it on, and here I’m fortunate once again – 20 years as a monopod has given me great balance on my right leg. I can hop, and I do hop pretty much daily. Like when I have to get up in the middle of the night. (…except when camping because it’s hard not to pee on oneself squatting on two feet, let alone one.) And in the shower, because ‘little foot’ needs a proper bath and a wet leg is uncomfortable. And when sleeping, because it’s uncomfortable to lie in, little foot’s skin needs a break, and bedmates don’t like getting wacked with the hardware in the middle of the night.

The rest of the time, I’m pretty much a leg-on kinda girl. It’s not the same for everyone, though. Take climbing – I always went leg-on because it seemed most logical and was logistically straightforward. Plus, I wanted to build strength and improve balance on my left side. But check out Urko Carmona. His amputation is very high and as a result I’m pretty sure he can’t wear a leg. His brilliant solution is three points of contact. Watching him climb I wonder if he could crack walnuts with his trunk muscles. Arm amputees will often rock climb without a prosthetic, I assume this is because it’s all fun and games until you pull down on your arm and it comes off, at which point you’re stuck on some rock face without an arm you’re used to climbing with and a belayer who’s just taken a hunk of plastic and metal to the head*. With- or without-prosthetic, it all requires a bit of creativity, and an expanded idea of what is possible.

*Never seen it happen. But I have seen an ice-climbing foot come off and go flying into a canyon. Think ice-climbing crampon without boot, hurtling groundward at Mach speed. Not cool.

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.

Function / Form

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”