I developed a blocked stomach or pyloric stenosis soon after my birth. My parents always postponed telling me about the scar on my belly, but I did realise quite early that I was “a survivor”. My scar was “from being made better when I was a little bit sick”. Talk of an understatement! Only much later did it become clear how powerfully the whole episode had affected my parents and me.
It’s intriguing to me that most pyloric stenosis survivors are not greatly interested in telling or discussing their story, let alone exploring it. I am in a minority. Several middle agers have written to me that they never knew or cared about what caused their stomach scar. Another minority enjoy a bit of exhibitionism, and have worked out a horror story to “explain” their scar: they were stabbed in a fight or attacked by a shark. Others again are able to forget their scar until asked about it at a medical check-up. “If only!” I can feel so envious.
I’m shy, introspective, and curious. When I first became seriously aware of being a little “different” (around the age of 5), I desperately needed to feel my family accepted me whilst I became increasingly anxious about my scarred belly being seen by anybody else.
As soon as I was old enough to find my way in the school library, I took my first steps to become a modest medical researcher. If my parents wouldn’t talk, perhaps the library would. But in the 1950s school library books had only the most elementary information about infant surgery, let alone pyloric stenosis. Even university and public libraries could do little to satisfy my curiosity. It became clear to me that detailed medical information was closeted in the specialist libraries of medical schools.
The Web has increasingly given the world access to the massive growth of knowledge and skills and it signed me up some 15 years ago. It has generously satisfied my need to know and understand. It’s also allowed countless millions to hang up their shingle or network across the earth on common interests. All this moved me to bring together and focus some of what I wish I had known and realised when I was growing up.
So the Web has broken down my isolation and loneliness. My need to know is unusual but far from freakish. The same is true of the problems my parents and I have each had because of infant surgery. The long-practised secrecy of the medical profession was comfortable and convenient, but knowledge is power, and supports total healing when a physical “fix” is not enough.