Living with limb differences – a journey from childhood to adulthood

limbs4life 33My name is Gary and I am a person who started life with limb differences. I’m pleased to share my story as I hope it can highlight that ‘being different’ doesn’t stop you from achieving all your goals in life. I also wanted to speak to you about the important role that Limbs 4 Life has played in my life and how excited I am that the Limbs 4 Kids program is going to support all Australian children with limb differences and their families.

I was born in 1962 with a congenital condition called ectrodactyly which resulted in both hand and foot limb deficiencies.  In simple terms it means I was born missing the three middle fingers of my left hand as well as fused bones and missing toes on my left foot.  I had a Syme amputation when I was five at the Royal Children’s Hospital in Melbourne and I also had further revision foot surgeries during my teenage years and as an adult.  I now consider myself to be both a person with a limb difference and an amputee.

Looking back, the Syme amputation that I had as a child changed my whole life.  Prior to the surgery my foot was rotated 75 degrees, had only 3 toes, had fused bones and a malformed calcaneal (heel) bone; making it impossible to walk properly, let alone run. The amputation enabled me to fully participate in the community, in sport and in employment. I wear my prosthesis every day, from the moment I get out of bed until I retire in the evening – I find it very comfortable and very much an extension of “me”. Over the years I have developed a sense of where my foot is in space, almost like a sense of touch. For instance I can tell without looking where my foot is placed on the car accelerator or on the pedal of my bike.  My hand is as it was the day I was born and I can do anything that anyone else can do despite the fact I am missing fingers!

When I was growing up there wasn’t any community support available to amputees.  The only times I ever saw amputees was when I went to the Limb Centre and I never saw or met anyone my age there.  It wasn’t until I was in my early 40s before I actually met and chatted with another amputee. I’m so glad that now all children with limb differences have a chance to meet someone like themself when they are young and, as happened to me, don’t have to wait decades for that to happen.

Growing up as a young amputee, my family didn’t treat me any differently to my other siblings.  My parents allowed me to try new things and were always there to help me along the way.  On the whole, my school friends were fine about my leg and hand – they just treated me like any other kid.  I do remember that there were a couple of kids at school who could be a little nasty at times which did hurt, but I learned how to deal with it.  Joking sometimes helped and when I was young (and even today) I told many jokes or stories to explain my “missing leg”.  “A shark took my foot”, “it was eaten by ants” and “I stepped in a hole and my foot never came out” were probably amongst the most popular stories I shared with peers, adults and strangers.

I’m a sports fanatic and I found that playing sport meant I could compete against my peers and achieve success.  I loved to win, but for me winning wasn’t always about beating the opposition it was about me performing to the best of my ability.  Football was my passion (still is!) and it gave me the opportunity to compete physically.  Football allowed me to gain respect and challenge any negative comments made about my disability. Just because I was “that kid with the wooden leg” didn’t mean that I ever expected any favours. I wanted, and needed, to work for it. The more respect I earned the better I felt about myself and the less different I felt.  They say sport is the great leveller and in my case it couldn’t have been more true. It was only when I got older that I found out a lot of my school and sports friends used me as an inspiration for some of the things they have achieved in life.  I didn’t know that back then and, while I feel proud about the effect I had on them, it does make me feel a little embarrassed saying it publicly!

Being an amputee hasn’t held me back in life at all. I’ve played many sports, been married to my wonderful wife Ruth for decades, have two amazing sons, pursued a variety of careers and I’ve travelled extensively.

As a kid sport was my recreation, my hobby, my social life and my passion. I did cross country running and I played football, hockey and cricket. Later on I discovered a love of squash and played three times a week. I also found that ice skating was great fun and could be found at the South Oakleigh rink most Friday nights through my teenage years. During the summer I spent hours each day on my bike and I also managed to make some money delivering the Sun Newspaper by bike six times a week.

I didn’t really think a lot about relationships until I met Ruth and fell head over heels in love with the most amazing person I have ever met. I was always so busy doing my own thing that I never really had much time to think about relationships and how they might work. The only time I ever felt uneasy about girls was when I was about 15. I went to an all-boys school and attended a social dance with the local all-girls school. It was during a dance that a girl reached out to hold my hand and screamed! It did make me feel uneasy at the time and I’m sure it was difficult for her also as my hand difference was a complete surprise to her. But like all things I got over it and I learned not to hide my limb differences.

Meeting my wife Ruth was the best thing that has ever happened to me. She was never fussed about my leg or hand and was able to see the person inside and taught me to do the same.

I never had to explain my limb differences to my sons.  My kids have grown up with it and to them it’s completely normal. I never had to sit them down and say “ok guys this is what happened”, instead their understanding just evolved over time. My two boys are amazing people.  The only time I have ever had to speak seriously about it with them was in recent years when research revealed that my condition can be passed down. When I told my oldest son that there was a chance his kids could have a limb difference like mine all he said was, “Dad you have done just fine and I’m sure that if my kids had the condition they would do just as well”.

I’ve had a number of different jobs over the course of my life.  My first job was as a metal fabricator producing security door frames.  After that job I worked in retail, with over 17 years of that managing night fill crews in a supermarket.  I always found my employers to be understanding of any needs I might have, but apart from having to take time off now and then to go to medical appointments I never really needed support in the workplace.  If I found difficulty in a task I always tried to find a way around it. At the age of 38 I returned to studies and completed a Diploma in Remedial Massage.  Initially I worked in a busy local clinic but in 2004 I branched out and started my own massage business.  Overall, you could say that a significant amount of my working life has been spent “on my feet” and doing physically demanding tasks!

I’m lucky to have done a fair bit of travelling with my wife and children.  Security gates at airports can be tricky as I set off alarms whenever I go through them, so I always wear shorts that show off my prosthetic leg so that security staff know what is going to happen in advance.

I have two tips when it comes to travelling.  Tip one – always arrive early and wear shorts if you are a leg amputee.  Tip two – on long haul flights DO NOT take the leg off completely unless you have to. One time I travelled to Los Angeles and after having taken my leg off during the flight meant I arrived with a swollen leg and was not able to get my prosthesis back on properly – this resulted in one leg being about 25 centimetres longer than the other so I think I should have been awarded ‘Best Silly Walk of 2003’ for that.  I haven’t had any problems with access to showers when travelling as I’m pretty good at adapting to the different facilities.  But it’s great that more and more hotels are offering rooms with accessible showers.

Limbs 4 Life’s importance differs from person to person; for some it will be support, for others it will be information, and for others it will be social. Or it could be a combination of all of these.  Having had no contact with other amputees growing up I never saw myself as an amputee, I was just “that guy with the artificial leg”. However, since connecting with Limbs 4 Life ten years ago I have become, in my own mind, part of a community.  I am very proud to be able to volunteer my time to support others “like me”. I think having one loud voice from an organisation, rather than many quiet voices, will allow us to create change that will benefit the next generation.  Limbs 4 Life and the new Limbs 4 Kids program has an enormous capacity to do that.

My life motto is that “Life is a series of hurdles. Some you can get over easily, but others might be much harder. When there is no way to go over a hurdle, then you must find a way to go around them. There is always a way”.  If I can offer any advice to children and young people with limb differences I would say don’t try to be what you think the world wants you to be. Instead, be yourself and the world will come to you.

Living with limb differences – a journey from childhood to adulthood by Gary Johnston