This post was written while I am enjoying and working in Tasmania, which hangs under the Australian mainland as its smallest State and like a heart-shaped earring.
My connection with Tasmania is slender in terms of time: I have lived here for only 5 years, the shortest chapter of my life, and yet these five years were the most formative of my life. I have posted about this elsewhere, but for here and now, just one small sample. Forgive my reminiscing in this post.
One evening this week I attended a function for the local Dutch community. At this function I met up with an older man who lived across the road from us when I lived in Tassie. This reconnection brought back a flood of memories: he was a successful and generous businessman who gave my brother and me our first job as teenagers. He also asked a couple of our family’s youngsters to mind his younger family whenever he and his wife had an evening engagement.
It was during one of the first of these evenings that I discovered a small red Pan paperback on this family’s bookshelf. It was written by a pediatric surgeon and devoted a chapter to each of a goodly list of the conditions of infancy that could be remedied by surgery.
One of the chapters was of immediate and compelling interest to me: it dealt with pyloric stenosis (“PS”), the reason for more early infant surgery than anything else (other than circumcision which of course is purely elective and unnecessary).
In my first 16 years I had been ravenous for a chapter like this. My parents had made it abundantly clear that they thought it best to tell me almost nothing about the weird scar pattern that was so “front and centre” on me. Mum and Dad had one book on child health which had one meagre sentence about pyloric stenosis. On starting high school I discovered “the library”, and several times a year after learning about the cataloguing system I would scan the shelves for any book that would help me to understand anything about PS or scars or surgery or abdominal anatomy and complaints. There were some more passing comments in the encyclopedias, but I learnt nothing really new.
My “little red book” became required reading every time I babysat. I found a copy of this book in one of the city bookstores but foolishly decided it wasn’t worth a good part of my very small savings – after all, I could reread the chapter of interest so close to home and any time I was in the city! Sadly now, I have never been able to find another copy…
This one chapter told me so much more than I had ever known: the symptoms of PS, the condition’s obvious effects on the baby and the parents, the diagnosis and the surgical procedure, and what could be expected during the recovery period. I read and reread that chapter countless times: this became a ritual, but more than that, it engraved the basic information about PS indelibly into my memory.
During my first five decades I learnt little more of any significance about PS. It was when I gained access to the internet in the later 1990s that my knowledge really took off. The last 15 years have also made me aware of what my “little red book” never told me – or I suspect could tell me. The problems that have dogged me because of my PS history would not be managed by growing my knowledge of the condition and its treatment. There was another dimension.
In the 1960s, the medical world knew little or nothing about the somatic (body’s) memory of pain and deprivation in early infancy, or about the long-term effects of this, including the possibility of post-traumatic stress. Medical-land was unable or unwilling to consider (let alone discuss with the patients of pediatric patients) even the possibility of babies being affected by surgery without anesthesia, and by being quarantined from their mothers to fight infection. Besides this, in most Western countries many surgeons were becoming increasingly addicted to the wonders and kudos of surgery as effectively the only treatment for infant PS, and again, would never discuss treatment options with parents.
The internet has allowed blogsites like this and web-based discussion forums to share information about experiences, management options, hazards, and the possible outcomes and long-term effects of PS and its treatment.
For me the value of this was kicked off long ago, when my “little red book” was able to tell me what my parents and my paediatrician uncle never would.