Tag Archives: therapy

Scar revision by tattoo

There are times when a picture is worth a thousand words – or more!  And this subject surely asks for pictures even more strongly than my previous post on scar reduction surgery.

In a Comment on this previous post, Wendy stated (in my words) that she would not want any more tampering with her pyloric stenosis scar because of the complex feelings she has had about it all her life.  From my own journey after the same surgery I’m pretty sure I know just what she feels.  I want to explore this after time for more reflection.

And like Wendy I belong to today’s older generation, many of whom regard body art including tattooing in a very different way from much of our younger set.

However, I have been blown away by the creative and effective way in which some people have combined their surgical body scar with art, some to hide their scar and some to embellish it, even with humour, but always with the clear aim of reclaiming their abdomen as their own.  Why should the scar on my abdomen represent for the rest of my years the workplace (and all-too-often a rather unsightly one) of perhaps a long-ago surgeon who had little care for how I their patient would think and feel one day, or of my own body after it has gone somewhat berserk in dealing with the damage from a surgical assault, resulting in a collection of hideous keloid scars, troughs and pits?

For what it’s worth (and we are all so different), I have found that my own very limited efforts to modify my scar would be regarded by many as self-injuring, but they were also my attempt to claim some authority and ownership over what had happened to my body very early and without any of my involvement.  This may seem weird to some, perhaps – but it’s true.

As with scar-revision and reduction or “plastic” surgery, it is not hard to find websites advertising “scar tattoos” or “tattooing over scars”.  Here are five of the best results I found from a limited search; click on the image to enlarge it.

Cobertura cicatriz Elaine - Flickr EspScar w tattoo covering01

Scar w tattoo surround01Soobie - midliner w cherry-tattooScar revision tattoo01

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John’s life-changing infant surgery

As I observed in my previous post, reviewing 2012, one of the heartening things has been the growing number of people connecting with this site to tell their infant surgery and PTSD stories, to network, and some to interact as trusting friends – as those with a shared experience or passion will often do.

This post moved me deeply and conveys the message of this blogsite so well.  I am sure it will bring home to many of our readers that infant surgery was usually and can still be traumatic, both at the time and in its after-effects.  Whilst I am thankful that anesthesia and pain management are now much safer and more advanced, John’s story certainly underlines many things for me.

This week’s post belongs to John, who writes…

Thank you for your blog.

I had infant surgery for a congenital cataract at age 8 months in 1975.  I now know from your blog and from other research that the surgery was conducted without anesthesia.  In the recovery room, my eye was bandaged and my arms were taped to boards so that I could not bend them to tear at the bandages.  I was sent home in this condition and remained bound, I believe without pain medication, for one and a half to two weeks.

I am wearing blue, am about six months old and have not had any surgery.  I appear to be a normal healthy baby who is happy.

I am wearing blue, am about six months old and have not had any surgery. I appear to be a normal healthy baby who is happy.

Here I am wearing white, I am about a year old and have had my first surgery (at about 8 mos.).  You can clearly see how severely I was affected.  I appear to be younger in the second picture than I am in the first.  I am holding my head and my body, in particular my left arm and leg, in a very un-natural way, and I am squinting with my left eye--the eye which was operated upon.  In looking at the picture, I feel like I must still be trying to get away from the pain.

Here I am wearing white, I am about a year old and have had my first surgery (at about 8 mos.). You can clearly see how severely I was affected. I appear to be younger in the second picture than I am in the first. I am holding my head and my body, in particular my left arm and leg, in a very un-natural way, and I am squinting with my left eye–the eye which was operated upon. In looking at the picture, I feel like I must still be trying to get away from the pain.

According to the medical literature, infant cataract surgery remained a “controversial procedure” with no standard technique or outcome (or even measurement of outcome) until the early 80’s.  My surgery was one of thousands performed between about 1960 and about 1980 when a viable procedure was finally developed.  Prior to 1980, all infant cataract surgeries were, to say the least, experimental.

My outcome was poor.  I never gained vision in my left eye and suffered three more surgeries by the age of ten – one, another experiment to remove scar tissue that had grown into the space they had tried to open in the first surgery; the other two for acute angle glaucoma, a very painful and (although not known at the time) common side effect of infant cataract surgery.

As part of the experimental protocol, I was subjected to aggressive vision therapy during my toddlerhood.  This “therapy” (again with no known outcome) consisted of my wearing a contact lens in the blind eye and for several hours a day wearing a patch over my “good” eye.  The patch effectively rendered me blind while I wore it.

At age 26 I ultimately lost my left eye due to the earlier surgical trauma and now wear an ocular prosthesis.  Last year I received a diagnosis of PTSD and have been seeing a very experienced trauma therapist for 20 months.  My prognosis for a full recovery is very good; however, things are fairly hard right now.

My PTSD cost me my job and my marriage.  I am employed again (as a web developer with a flexible schedule) and rebuilding.

I suppose I am writing just as a way to reach out to the nascent community of survivors of this special brand of torture.  I am not certain that many of us have survived into adulthood, or survived the PTSD if we did.  Others may not know the truth of what happened to them.  I think that many things are coming together now to help us all connect: the Internet, changing attitudes that allow old things to come to light, and the tendency of PTSD to manifest very strongly in one’s thirties–the age bracket of those of us in the “last wave” of infant surgery without anesthesia.

It is good to know that I am not alone.  The last six weeks have been especially hard.  Your blog has made it a bit easier.

Peace,

John

Email from Connie

The last few posts here have looked again at what can result from infant surgery in the long-term, this against the effects on me and others I know of the pyloric stenosis we had as a baby .

I received a long email in response to these posts, with the request to publish it here.

Hello, my name is Connie Harrison; I am 63 years old and I had pyloric stenosis surgery when I was 10 weeks old.  This was in 1948, at least that was what my Father told me, and that is all he told me.  I’ve no one to ask now as my Father and Mother are both deceased, as are any others that might have some information.  I can only relate how the surgery may have affected my life up until now.

It is interesting to me that I never thought much about the surgery that left a scar on my abdomen from the bottom of my sternum to the top of my navel.  It was just always there and I guess it really never concerned me.  It was only until a few weeks ago when I woke up one morning with the thought in my head, “I wonder if the surgery I had at 10 weeks has somehow traumatized me?”  

I had been receiving regular acupuncture for digestive problems and the acupuncturist had been needling around my scar.  Two or three times a week she would insert about 20 needles in my abdomen around the scar and I would rest for an hour or more.  So to wake up one morning with that thought in my head right out of the blue: was very thought provoking and I wondered right away, was it the acupuncture that had caused the thought.  Had to be, I’d never ever thought anything close to that, and the scar was on my mind.

I immediately started looking around on the internet and that is when I found your website.  Needless to say, since I was diagnosed last year with PTSD and all the things that go with it (as well as lifelong depression), I was astonished to find so many things in common with what I read on the web site.  I have always, always had the feeling that there was something that happened to me as a child that I could not remember… so I am thinking the early infant surgery may be the answer.  It really remains to be seen as I have had a lot of trauma in my life.  Abandonment by my Mother and Father, my Grandmother, death by suicide (my father), separation from my Mother due to illness when I was 3 years old, and as an adult an abusive 1st marriage, my son’s drug and alcohol problem at a young age, and my daughter’s crippling RA (rheumatoid arthritis).  Yes, many traumas… but still a lingering thought that would not go away, what else, what else?

So I know this is not much but it is definitely something for me to think on. It is unfortunate that I have no records, nor do I know where the surgery was performed.

I do think, however, that the acupuncture woke something up deep in my brain that caused me to wake up thinking about something that had never crossed my mind, nor would have in a million years.  And of course the Holy Spirit had everything to do with it!

Thank you Fred, for your website and blog.  I will be following it in the future,  maybe some other miracle will awaken my long forgotten memories.

God Bless You!

Sincerely, Connie Harrison

Creativity can be healing (3)

My last two posts have visited some of the places on the internet where people share the impact of surgery in story, image, and poetry.

This last of this series will look at two more websites, a little more unusual than the others I have reviewed.

Ted Meyer records people’s scars in their actual form at Scarred for Life.  Like the other creative people in this series, Ted Meyer’s interest in combining medical science, life and art started from serious illness in his own infancy.  His art deals with the emotional impact of pain and healing on everyday people — patients, families, and medical personnel.  He writes: Scars mark a turning point in peoples’ lives; sometimes for good but often otherwise.  Each scar comes with a story.  Why is it there?  Would the person have died without surgery?  How did the “scaring event” affect them emotionally?  Scars can mark entering into or out of a disability.  Going from cancer to health, limited mobility to full movement.  They freeze a moment in time, a car accident or gun shot.

Ted Meyer's portrayal of a subject and his scar from old-style surgery for pyloric stenosis

Again like the three previous artists in this series, Ted Meyer’s focus for this project is the scar, for it is this that brings together life-saving medical knowledge and skills with the subjects’ personal stories and emotions.  He does not use photography or paintings for this project however, but transfers paint from his subject’s scar site directly onto paper, using the rubbing technique, one of humanity’s oldest ways of creating prints of anything from leaves to graves on a cathedral floor.  He enhances these prints with the brush and pencil.

On YouTube Ted Meyer speaks about his art, selections of which he has exhibited in several U S cities as well as in Istanbul and Osaka.

Clarity Haynes’ scar art is intentionally and resoundingly feminist in a way that not all women will find comfortable or necessary; I also believe that many men will value her project with great respect and admiration – both in a non-blokey way (as we say that in Australia).

Clarity Haynes began the Radical Acceptance: Breast Portrait Project in 1998 with her own nude self-portrait.  In her mid-20s she decided on making a portrait of her torso because she was feeling uncomfortable with her own body.  She found the experience transformative: it made her feel much more comfortable and accepting of herself, and she decided to offer this opportunity to other women.  Her website tells us:  Since then she has sought out and found enthusiastic participants at women’s festivals, fairs and similar events.  Each sitter enters Haynes’ booth to pose, record her thoughts in a book (often handwritten there and then), and consent to having a photograph taken of her nude torso alongside the finished portrait.

Haynes has completed over 500 breast portraits, and has exhibited her work at several locations throughout the USA, as well as on the web.

Like Clarity and other people I know, I have found sketching and photography a helpful and healing way of objectifying my self-image: by seeing myself as others see me I have come to terms with the fact that I am both OK and imperfect; I am much more than my scarred abdomen and my lanky, aging body; I now feel this as well as know it.

Let me quote Clarity again: My work includes portraits of those born with male bodies who have transitioned, as well as those living in female bodies whose identities do not match those dictated by society… This project is about finding dignity and beauty in the physical characteristics of the body that our popular culture often ridicules and heaps with shame, and in the process allowing the models who participate to feel pride in their particular selves – and by extension, the viewers of the work as well, regardless of their gender.

One of the triptyches included in the Breast Portrait Project was especially powerful to me, in part because the model was portrayed at three stages of her life.  In the first painting we see this woman as she might have appeared in her dreams: a pristine woman without a trace of life’s ravages, and the second portrays the effects of age on our bodies – just as our minds and souls mature.

In the final portrait of the three, Clarity Haynes’ subject has allowed us to share with her something of her deep and private pain.  Clarity’s subject does not have the ideal body of her dreams, and she has had to cope not only with age and a mastectomy but also with a large old-style scar, very similar to mine from pyloric stenosis surgery; it marks her as having been restored to life at a very early age but like me it left her to grow up feeling very damaged and alone.  Clarity Haynes added the revealing comment that this woman asked me to ignore the scar on her belly, which was the result of a surgery she had received as an infant that saved her life.  I asked her for permission to include the scar, because in fact it was difficult to ignore.  She agreed.

Isn’t it revealing and powerful that a mature-age woman can be quite willing to share her aging and mastectomied torso, but not the scar she has lived with from early infancy?  And what does it tell us the visitor that she decided to allow the scar from her infancy to be included?  No wonder this triptych harmonised so exquisitely with me.

Past Pylorix Pages – Pyloric Stenosis treatment in the 1940s (1)

In this fourth post in this series, we look at the decade in which I was born and started my story with the infant form of pyloric stenosis (PS).  Each decade during the 20th century saw more professional medical interest in and discussion of this condition, more medical journal reports and studies were published, and the survival rate of PS babies rose further.

It is not surprising that the differences about treatment that we noted in the previous blog continued and even intensified during the 1940s.

  • Should medical treatment always be considered, or should PS now be regarded as the scalpel’s territory?
  • What are the advantages and disadvantages of local and general anesthesia?
  • Which incision should be used to access the overgrown pylorus?
  • How can the deathrate be lowered further?

I writing this overview I have been able to read dozens of medical journal articles, and they give a picture that I find tremendously interesting.  They show the medical community was quite divided on the above and some other related questions – sometimes sharply and deeply so.  These accounts have also given me the key to knowing and understanding much more about my own PS surgery than my parents would ever tell me (or knew), even though it’s now 66 years after the event!  The web is wonderful.

The article I found the most valuable by far was included in the July 1947 issue of the Archives of Disease in Childhood.  It reviewed the carefully kept records of 112 PS cases treated in a large regional English hospital from 1938 to 1945, seeking especially to discover why there could be such a wide variety of results of both medical and surgical treatment of PS, as well as assessing its own practice.

  • In the light of what I wrote about the 1930s, it is interesting that only 8 of the cases were decided on the basis of x-rays; in the other 104 cases a palpable tumour was taken as confirmation.
  • Nursing mothers were admitted along with their baby, and separate “pyloric stenosis cubicles” were provided for each infant, both to minimise cross-infection.
  • Normally, glucose and salts were given alternately into each armpit and groin until the baby was rehydrated.  So that’s why I have those hidden mystery dimples…
  • Then medical treatment with eumydrin was usually tried, and the stomach was washed out twice daily, with enemas being given if needed – all to rid the little body of gastric residue.
  • It is noted that several studies had found that older babies responded better to medical treatment than the younger ones.  Babies went to surgery when it became clear they were not responding to eumydrin after a few days.
  • 12 of the 112 PS patients died: all had been admitted with “gross” or “serious” dehydration, and it was believed that these could have been saved after rehydration and prompt surgery; low birth weight was another mortality factor, and one baby died of bronchopneumonia that developed less than 12 hours after the careless use of ether (which was often very chilled).

The article reports that a search of medical literature shows that between 1910 and 1944 there was an average of 11.8% mortality from a large number of PS cases, and that these deaths were very evenly divided among the 4,162 treated medically and the 3,508 surgical cases.  It comments that many of the reports giving poor or excellent results for either treatment are not based on comparable techniques and conditions.

The recommendations are not surprising:

1                    Use separate cubicles;

2                    Breast-feeding greatly reduces gastroenteritis infections;

3                    Set clear criteria for the choice of treatment based on (1) the hospital’s and doctor’s experience with the treatment method, (2) the availability of treatment, and (3) the special considerations regarding each patient, including the age of PS onset, the baby’s weight, the duration of vomiting, the degree of dehydration, and the presence of infection.

New dads learning to feed their baby in the 1940s

This hospital also conducted follow-up research which found that the babies’ physical and mental development was unaffected by their illness but that some had continuing gastric problems, including delay in stomach emptying which was most common among those babies who had been in the hospital the longest.

In my next post I will pass on some more of this wealth of material that is so telling about the treatment of PS during the 1940s.

Self-harming: a pain-filled subject

This is post is one not everyone will want to read.  I need to write about the self-harming that all too often is part of the post-traumatic stress that can result from surgery in early infancy.

Why do I feel the need to open up the subject of self-harming?

Because it is so often part of trauma, so common and yet so rarely mentioned.

What do I expect to gain from writing about my self-harming?

For those who self-harm or have done so, I hope they will realise they are not as alone as they may feel.

For those who are close to a self-harmer (whether they realise it or not) I trust that reading my story will make them more aware of what usually causes self-harming and how they could become part of the self-harmer’s healing.

I deeply appreciate those who have expressed their respect, admiration or appreciation of my honesty and openness on this blogsite.  I clearly do feel very deeply and passionately about my subject in all its forms and complexity.  At my age I am thankfully well beyond my blogs affecting my nearest and dearest, myself and my work.

What is self-harming or self-injuring?

It is defined as the intentional, direct injuring of body tissue, usually without suicidal intentions.  It may involve piercing, cutting, burning, banging or hitting body parts, and even poisoning.  I am grateful that I self-harmed in only a very mild way, although I managed to do all four of the kinds of self-harming mentioned, and over a considerable time.

It should be noted that those affected by PTSD can also harm themselves in non-physical ways, showing their pain by unusual behaviour in many forms.

Why did I self-harm?

I was very rational about it.  At the time I was very obsessed (and in a very private way) about the 10 x 3 cm scar on the middle of my body left by surgery for pyloric stenosis only a couple of weeks after my birth.

I wanted to experiment what would have caused this scar, what the cutting and stitching must have felt like, how the wounds healed, and what kind of tissue this kind of scar consisted of on and below the surface.  Like most self-harmers I did all this without anybody knowing or even noticing, in high secrecy.  Unlike many self-harmers I did not slash my arms, legs, or torso: I just worked on my scars.  This meant I kept my scarred belly out of sight for more years than it would otherwise have taken me to come to terms with having a very obvious surgical scar.

Only well after reaching adulthood did I ever talk about my self-harming, and then only with my wife; she had some reasonable difficulty understanding me about this, although she has always made it clear that she loves and accepts me regardless of some inscrutabilities!

It is only in recent years that I have come to understand my self-harming more fully.  My experimenting and attempts at re-experiencing were in fact only the tip of a kind of  iceberg.  I have learnt that self-harming in its various forms is a common sign of several conditions, including (in my case) trauma that has not been treated appropriately.  My self-harming expressed my loneliness and alienation, frustration and even anger and hatred, and indeed self-punishment.  It was also a coping mechanism to relieve my emotional pain.  I now recognise all these feelings in this part of my life story.

The trauma of my surgery and all that went with it had been experienced by my body even though my mind was incapable of recording and recalling it.  I believe my self-harming was part of my instinctive self-healing, as I re-imagined, re-experienced and explored what happened to my self so that I could integrate and calibrate my body’s memories and my powerful emotions.  Dr Louis Tinnin has written very simply and accurately about recognising and treating trauma stress, and I have created a link (see BlogRoll at right) to the Freedom’s Calling videos at the Women of Grace website which has valuable video material on the same subject.

What might have helped me to avoid or reduce my self-harming?

Could I instead have worked through the trauma caused by my having had infant surgery?  Today we have a much greater understanding of this whole subject, and this knowledge is shared by far greater part of the population in developed countries like mine.  My counsel on how we can reduce the long-term effect of trauma on children must therefore not be seen as a criticism of my parents or medical lifesavers.

Pediatric doctors need to work towards healing the mind and soul as well as the presenting physical condition.  In my work I have seen far too many doctors speak mere facts and deliberately leave the patient’s total needs for others to deal with.  The parents of a very sick baby need much more than successful surgery, and so does the baby!

Parents must document and communicate their infant’s survival story.  My parents not only refused to talk about my surgery; they made no photos, kept no diary, and destroyed the only bit of my survival story I have ever known existed: my weight chart.  Sadly, mine is not only a wartime austerity story: on the web many survivors tell us their parents told them nothing, not even what caused their scar.  Other parents resort to joking that would paralyse most children from ever raising the subject again.

Therapists and counsellors can teach us all so much about trauma: causes, recognition and healing.  I plead with them to make their knowledge and skills more widely accessible.  During my life’s work I have helped many people as a pastor and chaplain at very little or no cost to them.  As a result I am like most people (even in prosperous Australia) in not being able to afford the high cost of a trauma therapist.  It simply was never on my horizon!  How I would have loved to hear and read what I now learn via the internet.

Which brings me back to why I’m here blogging!

Taming the elephant

At just 10 days old I spent a few weeks in hospital recovering from an operation to remedy a pyloric stenosis (blocked stomach).  My parents would never talk with me about the details of what actually happened and how it might have affected them and me, but all my life I have struggled with some of the typical symptoms of trauma.  In earlier blogs I have written about how some of these symptoms of my pre-conscious trauma have affected me.

I am frustrated by how complex and subterranean these symptoms have been, but have learnt that the effects of stress are like that, whether its origin has been remembered, supressed, or recorded in our wordless memory.  Consider this:

  • my memory of life events before age 4 or 5 years is blank,
  • I feel thankful for my life,
  • I was raised in a happy and stable home,
  • I have not suffered any other trauma,
  • I believe I have benefitted greatly from being a life-long Christ-follower, and
  • I’ve had a happy, interesting and productive life in many ways.

And yet the relatively minor surgery I had so young has been the elephant in the room through all of my life.  Nobody can see this beast but it’s almost always there: as large as life, potentially overpowering, painfully embarrassing at times, so often affecting my mind and sometimes what I do.

I’d love to be able to “put it (this elephant) behind me” and to “move on” as those closest to me might urge me.  I wish it would be less influential, or even better, to move out.  I’d like to be able to forget about it, or not to have it affect my life any more.  Why can’t I control it?

I have no answers (and there probably are none) to this question and to others which I and my nearest and dearest have asked.  What was it about the illness, the surgery, the hospital stay, my personality and choices, and my parents, that created this elephant?  Could its settling into my “room” have been avoided at any point or in some way?

By nature I am introspective and sensitive.  I recognise that this may well not help me, but don’t extroverts and driven people have resident elephants too?

Friends of mine have had counselling and other forms of therapy: a good counsellor can teach us ways of managing our elephants, and they can walk beside us as we make progress putting our life of obsessions behind us.  Like me, people have read, written, talked and networked about their pain and their “elephant”.  And as I wrote last week, the passing years often bring greater confidence and peace, and may even enable us to embrace our demon as a life-enhancing friend or a sacrament.

But those of us who share an infant surgery story like mine and have found themselves living with trauma find that whilst all of the available resources are helpful, comforting, clarifying, and in various ways healing, their elephant never quite moves out altogether.

Traumas including our obsessions are like the negative genetic traits we’re born with and the scars we gather up: they are indelible and they can dominate our life.  But they will fade, especially if we learn and work to gain control over them.