'At 16 years old - They Want To Amputate'

Hi, I'm John and this is my life story.

I enjoyed sport and was in both the school football and cricket team. One day I had the most excruciating pain in my right groin area at eleven years of age whilst playing football.

The pain periodically returned and after several visits to our local doctor, I was referred to an Orthopaedic Consultant who said it was psychological and I was trying to get off school. Eventually I had a biopsy when I was fifteen which showed nothing untoward. I knew deep down something was not right because it had been four years of an occasional shooting pain in my groin getting progressively worse.

As a young lad of sixteen I had a hemipelvectomy following five years of progressive pain, resulting in a cancer diagnosis. This meant to get rid of all the cancer, my whole right leg and part of my pelvis needed to be removed. It was physically devastating, but life is sweet when compared to the alternative of death. I have called it the Ying and Yang in my life, and I am grateful to have experienced life fully abled doing the things young boys do as they grow into adolescence before my amputation. On the Yang side, there are many positives I can recall, not just the empathy and understanding I have for my fellow human beings but the people I have met along life’s journey to enrich me.
 

Life changed overnight for me both good and bad. Good that I was still alive but bad because I now had to readjust from being an able bodied, carefree teenager to a disabled person. Life’s journey suddenly deviated to accommodate the new me, with my inherent physical limitations and pain management issues.

Three months later I had my first fitting for an artificial leg. A ‘bucket’ socket to sit in with two belts around my waist and a strap over each shoulder. In addition to this I was given two walking sticks and this image is far removed from any other teenager enjoying and experiencing life. Despite this my first feelings were one of elation because I would no longer need a wheelchair or crutches to move around.

Every step was painful as it is to this day, but your pain threshold rises to meet the needs of independent mobility. Eventually after a difficult eight months I managed to get rid of both shoulder straps and walking sticks. I bought my first car at seventeen and had a measure of freedom, but like most teenagers I wanted the fun and excitement I had missed out on.

I needed regular maintenance about every two or three months and most visits would take about four hours. This is a frustrating process or trial and error to get some semblance of alignment and comfort. After fifty six years of doing this my message to any new amputee would be not to compromise on this because of time limitations. Keep going and going and form a working bond with your Prosthetist to get the very best you can. In this way the sum of the two parts is greater than the whole.

I met Ann after a few girlfriends. A beautiful eighteen-year-old who just embraced my disability without a second thought. We fell in love, got engaged three months later and married a year after that. I was married at twenty and had my own house and a huge mortgage, but love conquers all.

We started a family six years later, moved to a new house and had a girl followed by two boys. A wonderful time of both our lives. To the children their Dad has always had just one leg so there was full acceptance. To me though, there were times when I wished I could chase them around the garden, play football with them or walk carrying them in my arms. Physically it was harrowing at times but to my disability I was emotionally strong. As devastating as it was physically there are numerous positives too. I am a better person for this experience, I have more empathy and appreciate such simple things in life, like the birds and colours in a garden or in the sky.

I had four or five jobs until I found one which I enjoyed in the Oil and Gas Industry, starting as a Planning Engineer. It was an exciting job with some travel home and abroad. My career was moving forward.

I had always enjoyed swimming and remember the first time I dived in the pool after my amputation. It felt brilliant, moving without pain but as I came back up to the surface and started to swim I ‘corkscrewed’ in the water, rolling around until I learnt very quickly how to compensate for only having one leg. When I had children, I also took them swimming with me and remember putting two on my back and swimming along with the children squealing in delight. Precious memories.

When Ann was thirty-six, we had the devastating news of her breast cancer, and a mastectomy was necessary. What followed was eight years of progressive operations, chemotherapy and deterioration culminating in her untimely death at forty-four. We were married twelve days short of our silver anniversary. It shattered me and somehow, I had to be Mum and Dad to our three children and hold down a full-time job. It was hard and painful for the whole family, remaining raw for some to this day.

Over the years my artificial leg was constantly needing repairs, and during this time I met many amputees who had their story to tell, some funny, some sad and others quite outrageous. I had learnt over time to manage my disability in limiting where possible my walking, using the shortest routes, and finding pain relief options which worked most of the time but not always. Nerve pain is unbearable and if you cannot manage it with medication, it is very debilitating and drags you down to a dreadful place.

Fifteen months after losing Ann I met Brenda. I never thought I could, but I fell madly in love again.
We married six years later and have just celebrated twenty years of marriage. I have been truly blessed with her.
 

I remember on our honeymoon in Tobago and booking a cruise to Nylon Lagoon in a glass bottomed boat. I mentioned my leg and said I needed to be able to step onto the boat from a jetty. ‘No problem, man’ was the response! When we arrived to board the boat the next day there was no jetty. The guy came and I explained about my leg, and I could not walk in the sea water. ‘No problem, man’ was the response, again! Five minutes later this giant of a man, wearing just shorts, about two metres square asked if I was the one wanting to get on the boat, moored some 50 meters away. I said ’Yes’, and in one swift movement he grabbed hold of my waist and threw me over his shoulders and started walking toward the boat. My wife was in hysterics at my predicament and she could see that my view over his shoulders was just looking down his shorts. Not a pretty sight! As I approached the boat the fifteen occupants all cheered but I must admit all I could focus on with dread was the return journey!

It has now been well over half a century of being disabled yet still I have hang-ups. I dislike seeing myself walk for instance. There are amputees who just fully embrace their disability, whilst others like me still grapple a little. I have looked inwards at why this is and faced what I do to disguise or cover my ongoing inner struggles, which have been somewhat cathartic.
 

My advice to a sixteen-year-old faced with amputation from the same terrible disease would be simple.

Say goodbye to your old life. Your new life starts now, you cannot go back. Embrace your disability and push yourself onwards to a full and rewarding life.

Spending many hours in waiting rooms for my artificial leg repairs enabled me to meet some fascinating and interesting amputees, from Paralympians to reformed drug addicts, who all had tales to tell. This human interaction on many levels has been captured to explore how different we all are when using our coping mechanism against adversity.

Time, they say waits for no man, but I embrace the experiences I have had because all of those would never have happened if the right decision had not been made when told, ‘They Want To Amputate’.

I know the ravages of time on my body will limit my walking in the future, but I am pushing myself forever onward to enjoy life with Brenda who encourages me and gives me such a special love in which we share and have fun every single day. What a wonderful life it has been, and I count myself lucky to this day.

This book, through personal insight, will answer some rarely discussed short term and long-term issues for those disabled through amputation affecting their circle of family and friends or those working with people after such trauma. I wish you all well on your own unique journey in life.


The book I have written, 'They Want To Amputate', is now published and available in all major bookstores and on Amazon.
 

If you have any questions, feel free to leave a message via chat!  John Paffett Movao Profil