The Mystery of the Missing Muscle
I am a 67 year old man with Poland Syndrome – though up until a few years ago I had no idea that is what it is called. It was only after hearing the Sussex cricketer Lewis Hatchett speak about the condition on Test Match Special that I became aware of the term and was able to research it. From listening to Lewis – and from that subsequent reading – I now realise that I have the mildest form of Poland’s possible; I am missing the pectoralis major muscle on my right side and so far as I am aware, suffer none of the other associated impairments (missing ribs, undersized hand/fingers, etc.)
Photo credit: Lewis Hatchett
Lewis Hatchett’s story was a revelation in more ways than one. He seems to have been blessed with not only an admirably positive attitude in his approach to dealing with the condition but also had teachers and sports coaches able to help him overcome the obstacles he encountered. I was – perhaps – not so lucky. Like many boys I wished to excel in sport generally but as the years progressed I found the inherent weakness in my right side a problem; I could not manage relatively basic gymnastic skills such as handstands or handsprings, nor could I throw (or bowl) a ball with any force or accuracy. At my grammar school we played rugby and for a while I thought that might offer some hope of success; however, the regime of weight training we were required to undertake if we wanted to perform at “team” level began to take its toll. I was one of the tallest boys yet also one of the “skinniest” and, it soon became obvious, one of the weakest when it came to bench presses, pull ups, etc. My coaches began to despair, as did I; eventually I “dropped out”, abandoned all ambition to be a sportsman and instead developed my interests in literature and the arts.
Lewis’ account also touched on the psychological difficulties of living with a physical impairment, something that I have always struggled with and which, on reflection, I now know I could also have handled better. Despite my parents’ desire to downplay the disabling aspects of Poland’s – they always insisted it was a “minor” muscle I was missing, a stance perhaps suggested by the paediatric consultant at the time of my birth – I was always painfully aware of my lopsided anatomy and imagined that so was everyone else. I was shy of displaying my bare torso – I still am – and whenever I did, during hot summers at the beach, I became over-sensitive and interpreted chance looks and remarks from total strangers as being directed at me in hurtful ways. This was the age of body-building ads by the likes of Charles Atlas and I was clearly destined to be the “skinny weakling” who would always have sand kicked in his face!
Adolescence also brought additional problems of self-confidence around girls because I didn’t feel I could compete with more “normally” shaped boys. I finally convinced my parents to consult our GP about the possibility of cosmetic surgery but we were told – erroneously, I now believe – that this was not an option.
I don’t wish to overstate the extent to which Poland’s has affected me over the years. I am fortunate in having a good brain and a talent for visual art, one which has helped me earn a reasonable living. In fact, it was this career which led to me another – memorable – encounter with medicine and Poland’s. In my early thirties and recently married, my job took me to Germany where I was involved in building/painting a film set. There I came down with a mystery fever – eventually reckoned to be mumps – and had to be flown back home. I ended up in an isolation ward and was one day visited by a registrar who was fascinated by my asymmetrical chest. He asked me if the condition was congenital – being so out of it I struggled with the word for a moment – and told me it was something he had never seen, only read about. I don’t recall if he ever gave it a name but he did ask permission to show me off to some of his students, who duly trooped in a little later. As I say, I wasn’t really too aware at the time but I do remember thinking what a bizarre development this was!
Given how rare this condition is I must of course count myself fortunate in having had such a mild version. I’m all too conscious that other sufferers have had a far worse experience than mine and that many of them – Lewis Hatchett in particular – have overcome obstacles far greater than those that I have recounted here. My main purpose in writing this has been to highlight how a little more understanding – and information – might have helped me to be more positive over the years, instead of letting the condition rule my perception of myself. I don’t often mention Poland’s to others yet when I have, both friends and (recent) family have assured me that they had never really noticed anything untoward about my shape. This may be due to my success in disguising my lopsidedness by avoiding tight clothes – or maybe it’s down to a lack of observational acuity – or perhaps they are simply being kind and decent people.
I commend the work that PIP-UK – and others – are doing to spread awareness of Poland’s and to support all who are touched by the condition. Please feel free to respond if my story has helped in any way.