This evening Helen and I visited some old friends and colleagues who are going through a hard time. We have spent time with them every week while we have been away from home – catching up on 45 years of water that’s flowed, and to support them in dealing with some pretty scary medical conditions.
Bill (not his real name) has had a radical prostatectomy, but the cancer that had caused this apparently metastasized to his bowels and then his liver. He has told us several times that he now has surgical scars covering his whole abdomen and shaped like an anchor: this clearly impresses him (and us) – but it doesn’t seem to trouble him greatly. His current battle is with 8 two-weekly cycles of chemotherapy (not his first) which has ulcerated his mouth and clearly lowered his resistance. The radio therapy to his lower abdomen has weakened his muscles and the pain from a groin hernia (inoperable for now) can’t always be controlled even by strong painkillers.
But Bill still walks up to two hours each day, loves talking and has not lost any of his droll sense of humour.
Mary (Bill’s wife) is younger than me but had a stroke last year. This was diagnosed as being caused by genetic thrombophilia, her blood’s tendency to clot, and this is now controlled by monitoring her diet and activity, testing her blood regularly, and taking warfarin to keep her blood at the right thickness. Long distance travel by road and air are virtually out, as our blood thickens during inactivity. This condition was inherited from both her parents and she has passed it on to her children. Mary and her family also have presented with a number of related gastro-intestinal conditions like colitis.
Both Bill and Mary are clearly living under some very dark clouds. Their Christian faith is real and evident but doesn’t change their medical outlook. When we asked Mary how she felt about her and Bill’s carrying a number of possibly fatal conditions, she shrugged her shoulders: “Both of us descended from parents who came from very tight communities, one Jewish and the other rural. Our specialists think there was inbreeding which affected us – although each of us has a very high IQ. But intermarriage concentrated our genes codes – so what can you do? You just accept it and do the best you can to live with it.”
Listening to Bill and Mary struck me very powerfully. Traumatic circumstances don’t always lead to trauma or post-traumatic stress disorder (“PTSD”).
…a type of damage to the psyche that occurs as a result of a severely distressing event. When that trauma leads to post-traumatic stress disorder, damage may involve physical changes inside the brain and to brain chemistry, which changes the person’s response to future stress.
A traumatic event involves a single experience, or an enduring or repeating event or events, that completely overwhelms the individual’s ability to cope or integrate the ideas and emotions involved with that experience. The sense of being overwhelmed can be delayed by weeks, years or even decades, as the person struggles to cope with the immediate circumstances. Psychological trauma can lead to serious long-term negative consequences that are often overlooked even by mental health professionals…
Trauma can be caused by a wide variety of events, but there are a few common aspects. There is frequently a violation of the person’s familiar ideas about the world and of their human rights, putting the person in a state of extreme confusion and insecurity. This is also seen when people or institutions, depended on for survival, violate or betray or disillusion the person in some unforeseen way.
This blogsite is devoted to exploring and sharing information about the problems that can arise from infant surgery, including PTSD (whether caused directly or indirectly), and how those affected can avoid or recover from these problems.
Bill and Mary’s stories made it very clear to me that we humans can endure tremendously scary, troubling, and painful medical conditions – but remain almost or totally free of trauma.
Writing these blogs and networking with countless survivors have assured me that PTSD can be caused by long-past events that many would think cannot be remembered or were of minor significance. The above reference makes it very clear why this is so.
- Babies who had surgery without anesthesia (for ease and safety reasons) while being tied down and paralysed to control them were not so much left with a bad memory as being totally and extremely violated in a way that was imprinted on what we now recognise as their “somatic memory” or body’s memory.
- Babies who were isolated from their nursing mothers for one or two weeks very early in their lives (for the sake of infection control) were deprived not just of a “human right” but of what was innately necessary for their emotional growth and wellbeing.
- Children who grew up scarred by early surgery were also violated in a trauma-inducing way when their parents could or would not tell them the stories behind their scars, answer their questions, and help them to come to terms with and build understanding and pride at being a survivor. Not to mention the damage done by parents who allowed their damaged child to become the butt of jokes, scary or far-fetched stories, or guilt-inducing details of the circumstances around their surgery.
Some of the causes of possible damage from infant surgery thankfully belong to history now. Pediatric anesthesia and post-surgical care have advanced far in almost all hospitals. Child psychology is much better understood than when I grew up and it has alerted at least the better informed parents and counsellors among us.
But the damage that has been done (and ignorance about it and denial of it) are still with us. There is much still to be done to spread and deepen the awareness of what good parenting and doctoring involve.