Recently I watched the 100th program of the popular TV series, Who do you think you are?
Appropriately, it was a review of some of the most notable of the 100 stories to date. Two utterly poignant segments joined “survivors” ardent about unearthing the fate of their ancestors and family members. An Anglo-African woman hoped to find some mention of her ancestors who had laboured as African slaves in Antigua. Another woman’s relatives were among the Jews trapped in Belorussia during the Holocaust: it was known that 2 girls in her family had been killed horrifically, literally by the hands of German soldiers.
I recalled the absolute apprehension and determination of the children of adoptive parents wanting to find their birth parents.
Some of the Who do you think you are? programs I have found to be rather “ho-hum” – interesting but somewhat lacking in power and passion. But not so the heart-rending search for what exactly had happened in utter blackness long ago and faraway in Antigua and Belorussia. Sometimes despite deep sadness or horror we just need to discover what we can find out. We feel a deeply personal and profound bond with imprecise stories about our kith and kin, with the general facts about certain people in other times and places.
My own search has certainly been nothing as emotional as that of the two women with links to Antigua and Belorussia, but it’s been passionate just the same.
But it has also reminded me that my early PS, surgery, hospitalization and parenting have affected me more than many other infant PS survivors. Most seem never to even think about their PS episode, some can’t identify or even care or want to know about “that scar”. And others recoil at the mention of what their first weeks were like for them and their parents – like the Facebooker who asked me to delete a photo depicting the starvation that some babies suffer before they are properly diagnosed and treated. We each manage our life stories in our own way.
My parents were people of bygone times who kept from me the details of the infant surgery I had when just 10 days old. Before I was 6 years old, I became desperate to know what had created what I later learnt was a surgical scar, running down the middle of my young body, and how I should answer the inevitable questions of the curious.
During my growing years I picked up enough from conversations and books to understand the essence and effects of surgical work, and what pyloric stenosis was. It didn’t take that long to learn how to avoid the inquisitive queries: I avoided most by covering up and lied away the rest. Meanwhile I learnt what I could do to remove what I believed was a length of white string caught under my skin… the answer was of course: nothing. Sure signs of inadequate parenting, an insecure child, an introspective nature, and (I discovered later) signs of PTSD and OCD.
A busy working and family life, plus the now understandable reticence of the then available information sources meant that between the ages of 20 and 60 I learnt little more. But “the need to know” was kept alive by my continuing episodes of feeling embarrassed, obsessed, and self-harming because of my scar and story.
The advent of the internet with its free, rich and growing flow of information and its potential for community-building was a major breakthrough and gift for me. It gave me many details which I had never heard or fully understood, and which I quickly recognized as some of the missing pieces of my puzzle.
Amongst much else I learnt –
- most of what I now know about infant PS – and that there is an adult form of this condition;
- how infant surgery was usually done before 1987 (and still is in the case of many circumcisions);
- that the danger of infection before the 1960s had a major impact on hospital protocols and procedures – with great effects on all concerned;
- that trauma (another “hush-hush” subject at the time) affected many of the babies and adults of those times;
- that PS and its surgical repair leave many with life-long problems, for some minor but for others very disruptive;
- that many medical workers were and remain ill-equipped to understand and fully help those who seek their assistance;
- that healing occurs in many ways and that we each seek or find our individual path; and
- that many of my approximate contemporaries who have had early surgery and are willing to network report psychological and related difficulties very similar to mine.
- that although my parents both died in the early 1990s without ever engaging with me about what were some obvious “issues”, I have discovered that the very little they did tell me and the main import of what I have learnt since are a perfect match!
- that I am part of a large number of infant surgery survivors who share my passion to connect our past and present: I receive a steady stream or comments from readers who value my sharing, explaining and honesty about what I have learnt.
I have enjoyed years of interaction with countless others who had older-times infant surgery and were able and willing to share their stories. This blog has triggered many of these passing contacts – and a few deep and revealing friendships. Forum and social networking sites such as Facebook, Experience Project, MedHelp, Patient, and Topix have been valuable also. Facebook alone has more than a dozen PS Support Groups (although only a few see significant traffic) with over 700 members!
Something deeply personal which I still don’t quite understand but sense I should is a powerful motivator. Whilst appreciating and respecting those whose problems are much larger than mine, I too remain both passionate and thankful about what I have learnt about “my story” which my parents kept from me.
I am now much better to join the dots between my past and present!