© 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”