This year, the 12th of October marked the six year anniversary of having my leg amputated. Thinking back now, it’s kind of weird that I never used to be able to detach a body part, but after 18 operations over the course of 14 years, a few million hospital visits, thousands upon thousands of x-rays and terminator jokes, the thought of finally being able to walk on my own two feet sold it for me straight out. It’s kind of weird to celebrate an anniversary in which part of me literally died… I’m not kidding the remains of my leg are cremated in a box, on my mothers bookshelf… Hey some mothers display their kids trophies, mine displays part of my literal corpse.
Rubie after her amputation.
I was born with Neurofibromatosis type 1; it’s a genetic disorder affecting 1 in 3000 people. People with NF type 1 have no or very few medical problems; only about 4 in 10 people with NF1 will have medical problems related to the disorder. In my case the NF1 mostly affected the tibia bone in my right leg, the bone was significantly weaker and shorter than my left. Over the course of 14 years I underwent a series of surgeries to try and correct the length, none of which worked for very long. The very first one being at age 2 when I had a rod put through my tibia to correct the bowing. This rod stayed in for 14 years until I had my leg amputated. The last surgery before my amputation was in 2009 when I had an external fixator put on to gain length in the bone, the pins where drilled into each side of the bone and turned four times a day every day for around three months. Doing this allowed new bone to grow inbetween. Unfortunately after gaining 13 centimeters, I fell over, breaking my femur resulting the fixator being extended up to my thigh. After this, the bone collapsed and we lost all the length. After a very long and serious talk with my doctors I was given two options, they could piece the bone back together and pin it, I would go through another round of surgeries with no actual guarantee that it would work, resulting in spending large amounts of time in a wheelchair, or I could have the lower half of my calf amputated and be walking within a few months. My decision was easily made within the week.
I’ve never viewed myself as someone who has a disability, I know technically that is what I have but the way I see it, my life hasn’t been that different, I can do pretty much everything someone with two legs can do. I learnt to surf as soon as I got my prosthetic leg and now it’s one of my favorite hobbies.
Rubie catching waves on her surfboard.
I am currently learning to skate, which is a little harder but I’m expecting to pick it up in no time. So far the only thing I’ve found more difficult to do is cross my legs (weird huh?) after the amputation I was always the first to make jokes about it, one of my favorite things to do is tell new people a completely ridiculous story about why I have a prosthetic leg and see how long it takes for them to call bullshit. Special apologies to all the innocent old ladies I told gruesome horror stories to that were definitely not true, everyone else who believed me… you kind of deserved it.
Rubie’s new leg!
People often think people with disabilities are limited… That couldn’t be further from the truth. I learnt this first hand after attending my first “AMP CAMP” in 2014. AMP CAMP is an annual three-day camp held at Teen Ranch in Cobbitty, for children over the ages of 12 who have an amputation or a limb difference. It’s run by The Amputee Association of Sydney, we spend three days rock climbing, canoeing, horse riding, and so many other different activities. We learn new ways to do things, we catch up with old friends and make new ones every year. The atmosphere is so astounding; everyone joins in and has a good time. It’s about all being together and sharing our experiences, I couldn’t have asked for a better welcoming into the amputee community.
All in all the last six years of my life have been the hardest, scariest days of my life. But I wouldn’t change it for anything, I’ve learnt so much about myself and met so many incredible people with stories like mine, everyone has always been so supportive in the decisions I make I couldn’t have asked for a better life!