So what has this got to do with weddings I hear you ask?
Well this bit has got nothing at all with weddings, but future blogs will, I promise. This first blog sets the scene for what’s to follow. It is important because I doubt that anybody without a disability can begin to imagine how a person’s life and perception of self is changed by a disability. This has a huge effect on relationships, dating, living together, and as I’m just discovering; planning a wedding. There are obviously a huge range of disabilities, all with their own facets and implications. Everybody copes differently, so all I can do is share my experience.
In May 1999, aged 31, I dived into a swimming pool on a family holiday at a villa near Bergerac, France. I was there with my wife, 6 month old daughter, and 3 other couples. Yes there was water in the pool! Yes I did know it was shallow! Sooo many people do ask. I was quite an experienced swimmer, and was used to diving from racing plinths into shallow water, but showing-off a bit, this time I got to the middle of the pool, chipped my tooth on the bottom, and turned my head suddenly. That was it; instantly paralysed from the neck down. As I floated to the surface, face down, I remember thinking that “if I’m paralysed, then I don’t care if anybody turns me over or not”. Clearly one of my best friends did, otherwise I wouldn’t be writing this.
At the time of my accident I had just been appointed Director on the agency board where I worked. I consider myself very fortunate because, despite a very slow start academically, I had managed to get to University (well Plymouth Polytechnic), and find a job that I loved doing. My first venture into the working world wasn’t quite so enthralling; I was a statistician in the Actuarial department of an insurance company. Yes the Monty Python gag is true, it is more boring than Accountancy. My later career was as a Marketing Consultant, and I worked with fantastic colleagues and clients, on some great brands. Outside of work I was enjoying being a Dad, and loved family life. I even got out occasionally to play tennis for a local team, and socialised. Life was good.
I won’t bore you with the 11 months of rehabilitation at Stoke Mandeville spinal unit. By the time I left, I had regained all the function that I was likely to have to live with for the rest of my life, unless Spinal Research has a breakthrough. My label was c5/6 complete tetraplegic. This means that I can’t feel or move anything below nipple level, I can feel parts of my arm, but not my hands, and I can use my biceps and flex my wrists backwards. As you can imagine, not being able to use your hands is quite limiting. Combined with this I have constant nerve ending pain in my forearms and right shoulder which can be unbearable at times, and uncontrollable spasms. And finally, I am prone to Autonomic Dysreflexia, which means that if anywhere on my body that I can’t feel, is subject to noxious stimuli, my blood pressure goes sky high which can cause a stroke or death within minutes. Oh, and it really hurts in your head until the cause is removed.
So, I had suddenly gone from being a 6’2” tall, standing, walking, fit and able, independent, healthy man, to being somebody who is dependent on care and confined to a wheelchair that I cannot move independently on anything other than flat, smooth surfaces. This obviously has a massive impact on you, and your family.
The way I dealt with it was to tell myself that it’s happened, there’s nothing I can do about it, I just have to find things that I can do, and enjoy. I never want to be a burden to those around me, and always try to do whatever I can to help, but inevitably this is quite limited. I often feel frustrated that I can’t do more, and often have to compromise on what I would otherwise have wanted. Never is this more true than when you have a child (parents in wheelchairs); I would have loved to have been able to teach her how to swim, to play tennis, take her to fantastic places, and just to have snow ball fights.
In the early days I think I was in denial about the severity of my disability; I returned to work on a therapeutic basis, and attempted to play wheelchair tennis. Many people didn’t know how to react or treat me in my new state; often they would ask whoever was with me what I wanted, rather than asking me. This still happens today, and is really annoying. I can still think and speak! A disability awareness course for employees where I worked just made people more wary of what they could or couldn’t say or do. Being low down, and having a soft voice because of reduced lung function, it is also really difficult to make yourself heard. This compounds the problem, because you cannot take control of situations and direct what you want or need, especially in crowded, noisy places.
Being unable to get myself up, wash, go to the toilet, get dressed, get food or drink, get in or out of a car, or push myself around any distance, is incredibly frustrating. Care is a necessity, but having to explain things that you could do so simply yourself pre accident, is a difficult change to accept. In addition, there is always somebody with me, some are more discreet than others, but they are still there. Often carers are foreign and have varying standards of english, this makes things much, much harder, frustrating, and time consuming. Also just having someone in your home is very intrusive and unnatural for everybody.
After 10 years my wife could not cope any more and left me, taking my daughter with her. This was very difficult to accept, and left me wondering what my life would become. Would I be confined to a life of solitude, with a stream of different carers arriving to take care of me, having to explain the same things over and over again? Why would anybody want to be with me now? I am dependent, my body is unattractive because of paralysis, I need care, and things have to be much more planned and less spontaneous than before. I have always loved being with someone, and being paralysed hasn’t changed that. I love to love, and to be loved. I wondered how I would I ever find love again.
Next blog I’ll talk about what rebuilt my confidence, and my life.