Eight years ago I was diagnosed with Torticollis (or wry neck), three months later my son, Jay, was born. Whilst I am nowhere near disabled, it does effect my life and consequently how I can interact with Jay. And that’s what I wanted to talk about today.
First, for those who aren’t familiar with torticollis, a little info on the condition. There are 2 ways it can develop. The first is through an injury or other physical trauma, which can normally be rectified by fixing the underlying cause. I know of one person who had it from bad posture sitting at his desk, and all he had to do was rest for a few days and correct his posture when sitting. The other cause is genetic and is passed down through the family. This can not be fixed and will be a continuing condition for the rest of your life. This is what causes my condition and every 3 or 4 months for the past 8 years I have had around 20 injections into the muscles on my neck and shoulders to reduce the tension and relax the muscles there.
Torticollis causes the muscles in the neck and shoulders to contract constantly, and in my case my head is tilted to the left. On good days it isn’t that noticeable and I can move my head up and down and rotate it relatively normal. On most days though the muscles are stiffer and I have trouble moving my head, and tend to turn my whole body when I want to look from side to side. As you can imagine there is also a fair amount of pain and discomfort from the muscles constantly working. I do have pain killers and muscle relaxants that I take, but I try not to take them to often as I don’t want excessive mediation to effect me in other ways.
So how does this effect my relationship with my son? Basically it’s a limiting factor, not so much in what I can do, but how much I can do. So far we haven’t come across any activity that I flat out cannot do, but there have been times when I couldn’t do it at that time. For example, we go swimming, bike riding, bowling, play soccer and so on. But there have been days when I couldn’t bowl with him because of the stiffness and pain. I did go with him to support and encourage him, but I just couldn”t bowl alongside him.
In most cases though I can do the activity with him, but afterwards I’m stiff and sore, which limits how much we can do on any one day. Weekdays are usually the worst, since by the time I come home I’m already tired, more tired than I used to be from a days activities prior to the condition. But even then I’m able to spend time with my son around the house, playing games, watching TV and helping him with his homework. I just can’t be as active as I’d like.
And how does Jay react? He’s normally very understanding and will ask about Daddy’s sore neck. On days when I’m exhausted and just want to lie down, he’ll look after me and offer to get me drinks or things, and make sure I’m comfortable. Fortunately I’m not that bad very often, and most days I can do things with him in the afternoon. And weekends we try to do all the things that most families will do.
Overall I think I have a good relationship with Jay and we’re as close as any father and son, but there are times when I wish I could be more normal and do more to make him happy.
