The Bearable Lightness Of Being Me

My “Bearable Lightness” is a far cry from Milan Kundera’s “Unbearable Lightness of Being”, free from the deep social philosophies and political clouds of the Czechoslovak Communist period in 1968. Indeed my experience really is about lightness and freedom as opposed to darkness and complexity.

One of the effects of my condition is that I am extremely thin. Extremely with a capital E! I keep waiting for Hollywood to phone asking me to play the lead role in a starved prisoner of war movie. They wouldn't need any special effects, lighting or make up, I would just fit right in! Someone once told me that dystrophy was known as “stickman’s disease”. Well, that's just me, a stickman, on a diet!

This skinny-ness of course comes hand-in-hand with lightweight, something which mostly works in my favour. My slim profile enables me to use a very narrow wheelchair which in turn translates into one which can enter, exit, and navigate confined spaces very easily. My low weight saves me from the dangers posed by pressure sores and extended seating. Every so often this (s)lightness of being leads to some interesting interactions.

Once in a while I come across someone who feels that my skinny condition is somehow self-inflicted, apparently through a bad choice of diet. I, of course, know this to be untrue but when some folk get an idea in their head it is impossible to budge it and they are best left to run their course. When I was admitted to hospital in 1977 for a Harrington Rod spinal fusion operation the senior nursing sister took my light weight is something of a challenge, with a public decree that she would fatten me up during my stay under her care. I have to give her credit for a steadfast determination and bulldog-like unwillingness to give up, but when I did finally check out of hospital nine months later I was exactly the same weight as when I was admitted! I could easily have dismissed her failure on the basis of the awful hospital food which we were subjected to, but my parents had brought me a full supper every night (with pudding!), over and above the lunch and supper that was provided by the hospital, thereby giving her every possible chance of success. In fairness she did concede defeat in a very magnanimous manner, albeit quite baffled as to why all her efforts had been in vain, and with her confidence as a fatter-upper somewhat dented.

My light weight does not bother me in any psychological way and I have never felt the need to be ashamed or hesitant about it. It is the way I am, I've always been, and probably always will be. Not everyone shares this view however, and particularly in the corporate world one is expected to fit into certain predefined criteria. The only time I can recall ever having to be consciously deceptive about my light weight was when I applied for my first job at Old Mutual way back in 1978. They decided that before my job interview I should first be examined by their in-house doctor on the understanding that if he found something disturbing Old Mutual could cancel the interview without obligation to me. These days I am sure there is some law against such activity, but this was 30+ years ago and the times were very different. I had the medical examination and then the time came to weigh me. This presented a challenge to the doctor who was not quite sure how to manage it and ended up leaving me and my father alone in his examination room with a scale. My father weighed himself, then picked me up out of my wheelchair and weighed both of us, not an easy feat as you will discover if you try it yourself. The difference was, naturally, my weight, but when we wrote the figure down on the application form it looked so small that we added 20 kg to the figure! No one questioned it, my interview was successful, I went on to work for the company for the next 10 years, and the rest, as they say, is history.

My wife once confided to me that she always hoped that her husband would carry her over the threshold in the traditionally accepted manner of newlyweds. The choice therefore of me as her life partner made this something of a challenge, but it did present the opportunity for a role reversal. Someone was carried over the threshold, but the carry-er was not me, and the carry-ee was not her!

I have little doubt that my “undernourished” appearance is one of the main contributing factors to my being a target for would be donation givers as has been discussed in previous blog entries. There is nothing quite like the sight of a gaunt disabled person to tug on your purse strings! Whilst the merits or de-merits of this can be discussed in great detail my thoughts on this rather strange aspect of my life are well known. One group of people who never shy away from forthright observation and questioning are children, and the fact that most eight-year-olds have more meat on their bones than I do tends to attract attention from the little devils. Sometime ago I had one youngster ask me quite openly why I was so thin. Quick as a flash a friend replied “because he never ate his vegetables”! There were startled looks all around, and then gales of laughter. It was a moment of brilliance which I am sure paid dividends for many years thereafter every time there may have been some of eating resistance at the dinner table.