I have a very rare muscle condition, Myotonia Congenita. Of the two recognised variants I have Beckers’s, which brings with it not just an impaired ability for my muscles to relax after contraction but also sudden and unexpected bouts of weakness, especially in my arms and legs. My symptoms are severe, but I do get some relief with using medication. One of the frustrating features of this condition is that the symptoms can vary enormously on a daily basis. Mostly, I seem to experience a level that I can cope with thanks to the medication. Occasionally, I have good days when my energy levels are high, and I feel great. Unfortunately, I also get bad days when the opposite is true.

For most of my life I actually dealt with this condition without any medical intervention. The condition is so rare that most medical people have never encountered it. A person with myotonia has to struggle to move their muscles after they have contracted. It takes a greater than normal effort to do something like getting up out of a chair. The muscles respond by getting larger, muscular hypertrophy, which increases their weight, which makes them harder to move so more effort is required, which makes them larger again. When I was younger, I had an impressive physique, but it was all fake. My muscles were big, but they were also incredibly inefficient and prone to weakness.
Life for me was very much like the fate of Sisyphus in the myth; doomed to pushing a huge boulder up a mountain only to see it roll back to the bottom and having to do it again. Forever. It seemed that if I wanted to have a ‘normal’ life I had to push that rock up that mountain every single day.

As Albert Camus observed, life is inherently absurd.
My tag line is ‘an author and lover of life’. That also might seem to be absurd considering the above, but the last part is actually true. I do love life. I love being alive, even on days like today when that rock feels like it is too heavy and that it is going to roll back and flatten me. I am having a ‘bad MC day’ when all my symptoms appear to be worse than normal and my energy level falls towards the red line. I really do not like these days as they stop me from doing things. Although my disability makes me sedentary by nature, I still try to do things.

Perhaps this situation does render life absurd? To get to a normal level of activity I am going to have to expend a degree of effort that is greater than what a ‘normal’ person would have to. Fortunately, I discovered the meaning of life a few years ago. I do not measure my successes and failures according to some objective measurement. I do not believe that I have been made this way for some ulterior reason. Myotonia congenita results from a mutation at a genetic level when two strands of DNA are spliced together to create a child from two adults. It is not a judgement on either them or me. I was not given a choice to either push the rock up the mountain or do nothing. At the time I made my choice I had never even heard of Sisyphus. I chose to have a life worth living. I was not motivated by an idea of destiny or fate or qualification to a certain type of afterlife or even to be an example to other people. I was quite selfish, it was just for me. I wanted to go places and do things.

For me life does have meaning, but it is not derived from objective sources. I give my life meaning. I decide what is important to me. To read a book or watch a movie or cook a meal or be with friends or enjoy my wife’s beauty, these are all my choices. Some of them require that I push myself a little to be achieved, like going to Paris because I enjoy travelling. None of my choices have condemned me to pushing that boulder up the mountain. On an objective scale my life might seem absurd to an observer. In their opinion I might be putting an awful lot in and not getting very much out. It really is a matter of perspective. Today, I am having a bad MC day, but it won’t last forever. Besides, on a day when I do not feel that I cannot do very much I tend to sit back and reflect. Today, I get to appreciate that despite not feeling great my life is okay and I have what I need to give it meaning, if only to me.