Despite having very little function or sensation, bizarrely I didn’t consider myself disabled; I didn’t feel any different inside. For a few years I resisted getting involved with groups of people with disabilities, I think I had a certain perception of how it would be and how I would be treated. In essence, I was a 30 something man who knew his own mind, but I just needed someone to be my arms, hands and legs to enable me to function. The impression that I had was that people would treat me in the same condescending way that you hear some care workers talking to old people. This would have been more than I could bear.
My parents had been incredibly supportive, and suggested moving to the area to help. In the same way, this seemed like a backward step from being an independent adult. It was great to be home after 11 months in hospital, and my wife took on some of my care so that we could have as natural existence as possible. This must have been hard with a toddler and having gone back to work herself. We did have help during the day to help with my personal care, to get me out to attempt tennis, to do rehab, and to go to work. Care work looking after a very stubborn, fiercely independent, intelligent(ish) young man, cannot be easy. Ideally they need to know what you can and can’t do for yourself; to be there when you need them and not when you don’t; and to be able to anticipate and show initiative with things that obviously need doing, but to not take over decision making from me. Often within minutes a new carer will be putting me to bed, and seeing me naked, so it is a weirdly intimate but professional relationship. On the other hand, when you spend so much time together, I would find it difficult not to treat that person as a friend and include them in conversations where appropriate. That is easier with some than others, I can tell you. I must have been a nightmare to care for at the start, and I probably still am. Ask the boss ….
Apart from the need for assistance with nearly every aspect of day to day living, one of the hardest changes to deal with was the void left in my day. Previously, I had been going to work five days a week, and working very long hours; this had become my life. Suddenly, this didn’t exist, and apart from the length of time that just getting up took, and rehabilitation, there were huge gaps in my days to fill. Also, looking back, I think I felt like a second class citizen because I was no longer contributing to society through work; I felt judged, and that people were looking at me with pity.
I needed to find something new, so I decided to go on a ski trip to Sweden with the Backup Trust. Skiing I hear you ask? How on earth does that work, and how will that fill the gap?
The idea behind Backup, is to show people who have suffered a spinal injury what is still possible. Given my lack of bodily control, and my new aversion to the cold (tetraplegics are poikilothermic, which means that we cannot control our temperature), why on earth would going in a cart down the side of a cold, icy mountain be sensible?
It turned out to be the launch pad to a very different life; a life of acceptance, and an understanding of the world for me. I probably didn’t realise it at the time, but looking back, it definitely changed my outlook and gave me new-found determination and direction.
You will see from the picture that cocooned in blankets, 5 layers of clothing, a hat and a balaclava, goggles, 2 pairs of socks and boots; (somewhere under all that) is actually a person attached to a go kart on skis. Fortunately, there was always an instructor attached to the back to control my speed, and to take over when required. They were experts, and had adaptations to enable most people to take varying levels of control over the karts – totalskidskolan. In the evening we would come back, drink mulled wine, and sit fully clothed in a sauna, peeling off one layer of clothing after another until we eventually defrosted.
What really made the experience was the “apres ski”. I am a very sociable person, and I had become quite self-conscious going out. It’s very hard to enter a crowded place discreetly in a chair. Unless there is a clear wide pathway you have to ask nearly everybody to get up, pull their chairs in, and move out of your way. And then you get lots of those pitying looks. Also, if I’m sharing a table for a meal I take up a lot of space; I need my food cutting up, and picking up a glass can be a precarious event; which usually attracts lots of spectators. This makes the exercise even more uncomfortable as I become the entertainment for the evening. Being out with a group of equally inept tetraplegics, volunteers who understand, and a fair few apres ski shots of innocuous Sweedish booze; suddenly all inhibitions and self-consciousness had gone. I think it was on my first Backup trip that I found myself being lifted, in my chair, onto a small round table above a crowd of people at a rock/metal concert! Things had definitely changed!
It was fantastic to be around people who just “got it”, and to realise that many things were still possible; you just need the right people around you and the right attitude.
Another great thing about the trip was meeting two budding GB Wheelchair Rugby stars; this was before they both made it big and represented GB at several Paralympics: Ross Morrison and Justin Frishberg, I thank you. It was these guys who inspired me to get involved with Wheelchair Rugby. I knew that functionally I would be too limited to be able achieve much in the sport, but I wanted to get fitter and stronger, and to be involved in the same kind of social life I had experienced in Sweden. Within a few weeks of being home I joined the Cardiff Pirates (now the Ospreys), which despite being an hour and a half away was my nearest team.
Mentally I had shifted from feeling self-conscious and inept; to feeling more confident, valuable, and less an object of pity. This was really the start of my new life as a disabled person.
Next blog will look at the other events that have built my confidence, all the way back to dealing with divorce, dating again, and most recently proposing.