Let me take you through some of what I go through many mornings. Upon waking, I realize I am breathing shallowly. My teeth are locked in a grip; shoulders and neck are locked, too. The back of my neck is numb, the muscles extending from shoulder to skull heavy and thick. When I move, pain stabs the back of my head. Barely breathing or breathing as slightly as I can get away with, it’s as if I’m in an altered state. As most of my readers know, I’m a survivor of pyloric stenosis stomach surgery at twenty-six days old. In some ways, I am still that baby, stuck in time.
Here’s a paragraph from Tinnin and Gantt’s book The Instinctual Trauma Response & Dual-Brain Dynamics: “When the person is trapped and all hope for escape is thwarted, . . . the person surrenders to a stupified freeze state, numb and motionless at first. Often a parallel altered state of consciousness develops while the freeze persists. The person’s awareness and perceived location of consciousness may shift to deep in the body or somewhere outside the body. The body may now behave like a mesmerized slave in automatic obedience. The person’s detached perception may temporarily be protected from the pains of the body, but these unverbalized experiences may later become unspeakable body memories” (19). So here it is six decades later and body memories are having their way with me. I wake up in distress, a kind of stupified reality where my body acts as though it has experienced danger. But the frightening events happened sixty years ago!! In a way, a part of me hasn’t yet woken up from the instinctual trauma response (“startle, fight/flight, freeze, altered state of consciousness, automatic obedience (submission) . . . ” [20]).
Again, Tinnin and Gantt: “During the preverbal period, there is no cerebral dominance [usually the left side of the brain over the right] and no verbal coding. Memory of adverse experiences is held in images and sensations without words. When this memory is later triggered, the fear and pain may be experienced as if in the present. Preverbal memories of adverse events or conditions . . . do not find closure. Narrative closure requires verbal narrative. Survival instincts that are activated during infancy can continue as unfinished business throughout life” (21). Until we put the trauma response to rest, until we convince ourselves, through a re-storying of our lives by the dominant verbal side of our brains, that we survived the life-threatening trauma, we live in a kind of fugue state. Not in every moment, just in those moments when body memories are restimulated.
I need a ceremony—something to break the spell and tell my body at a cellular level that the crisis is over. Support is necessary. Witnesses. I can’t heal from the trauma alone. I have come this far, but I see that there are times that my body is still in distress, reliving the past. I have no doubt that I will re-unite the parts of myself. I’m getting closer. And Tinnin and Gantt’s book have showed me the uncharted territory that still needs to be mapped. They’ve also given me confidence that I can heal.
Quite moving. So wrenchingly sad. I hope articles like this help medical professionals and others behave more compassionately to prevent future tragic and unnecessary suffering.
Thankfully, anesthesia for infants undergoing surgery is standard protocol although I’m sure there are still some holdouts. Many adults though who were operated on as infants before 1987-ish are still suffering and may not know why. Depression, drug addiction, alcoholism, out-of-control anger, all sorts of neurotic behavior may be due to early torture but since the experience is pre-verbal, the story cannot be accessed in words. Pictures, somatic sensation, and emotions are key. Thanks for reaching out, Sari.
Dear Wendy…a week ago i was watching a show about the the power of terror and primal fear on the science channel. (It was not repeated …which I find interesting) And in 10 seconds my life, i knew , was going to change. The show said …that it was common practice to NOT use anesthesia on infants who underwent surgery. I was blown away. Wow…that’s gota be it my active mind said to my logical mind. I also had pyloric stenosis and my parents were in the christian science church! So needless to say i had this operation at the very last moment. I have for a long time known that I had PTSD, knew that i had been through an experience where I was near death but I struggled and struggled to know where it came from. Now I am sure. I have had the nightmares of operation lights and surgeons standing over me with the accompanying teeth grinding and terror response along with the neurosis that accompanies these nightmares. I couldn’t believe that people (doctors) would be so ignorant as to think that babies did not feel pain. I started research on the web and found your site. Now at 55 years of age I am confident of where these visions come from. I had for a long time thought that they were from when I had my tonsils taken out…but I knew that that experience really wasn’t that bad and wasn’t it. I have been interested in the psychology of PTSD for years and your site is a great resource for myself and (I’m sure) others who have been through this childhood nightmare. Thanks for having the courage to share your innermost feelings and thanks for the resources on your site and the validation that comes from knowing that I am not imagining these feelings that I too have been unable to verbalize. I’m sure there are many others out there who have had this trauma and haven’t a clue where these feelings are coming from. People need to be informed to this surgical stupidity. It is so hard to believe that I’m sure many who have not undergone this nightmare will choose not to believe. I recently looked up the effects of curare and it is obvious where the feelings of helplessness come from. I really doubt if my own family will believe me. Hang in there. I’m sure i will be reading and writing more later. Thanks.
Thank you so much for commenting! I am VERY glad that you are making connections back to your early surgery and that you found my blog as part of this research. By now, you’ve probably found my buddy’s blog, SIS (Survivors of Infant Surgery) as well, where there is also a wealth of information and resources. I cried when I opened my email and found your comment. Readers rarely comment and one can feel really alone with this material at times. Sounds like we are on the same page about the effects from the pyloric stenosis surgery; in fact, you are the first person to confirm the broxing, or teeth grinding. Other survivors I’ve spoken to have not mentioned this aspect as an expression of their PTSD. Do you remember the name of the show that you watched on the science channel? And about curare, you’ve inspired me to do some internet research on it. I’ve written about it in some previous post, but I’ve wanted to learn more for a while because I think some of the involuntary freezing reactions of my diaphragm may be due to what my body learned from the drug. Thanks for appreciating the work I am doing. And thank you for speaking out about your own precious process of recovery. You’ve made my day!
Hello Wendy and I’m glad that you received my message. I’m even more glad that I made your day. It is rare that Ayone gets to do that for someone now adays. I was also so surprised that there was someone out there that has had this operation under the same conditions that I went through…(although my daughter had it in 1993..I had to about twist her doctors arm to even consider it because he kept telling us that it only happens in “only” 1/4 of females and is mostly in males….well I said maybe shes the 1/4!). And thank god I know that she had anesthesia…I’d be angry as He#% if i had found out she haden’t. I feel that we are kindred spirits because of this. You have verified what I’ve known or felt for some time…and that is …even though sugeons can do some great things…many of them are egotististcal and unfeeling cutters who really don’t understand how people (in this case babys) feel. I went on to read your next article and I can really understand that anger thing that was talked about. But now I feel like for the first time in my life I understand where that anger comes from and I think that I can beat it (I hope!) I think most people may be able to understand and would be angry if they had been strapped on an operating table given curare and had a ventilation tube stuffed down your neck and then had someone (in a strange mask) proceed to cut on you with a scapel and shove their hands into your stomich looking arround for a muscle to cut with bright lights shineing in your shocked eyes all the while with no pain killing anesthetic. Curare requires a ventilation tube because it stops your lungs from working. I was very interested in the curare issue because I wondered if it was in some way a pain killer…it is not! It paralyzes the child so he or she can not move. They did that because little babies tended to squirm arround when they were being cut on for some reason…Imagine that! Humph ..go figure…I wonder why??? The program was called “Primal Fear”…and it was shown on the H2 or History channel 2. Its a channel created by the history channel that is usually more scientific and reality based (but not politicaly motivated or greed based) ..some people can’t handle some of the things shown on it in our denial in anything bad obsessed society….another interesting thing about our species and/or society. I recorded it on 4/26/2013 ..and there was only a 10 second mention that “they used to think that babies couldn’t process pain”…or something close to that effect and I have been in a state of semi shock and euphoria at the same time since it’s broadcast. I just couldn’t believe it! But your story and what I know in my heart and some research have convinced me…that it is very true! They didn’t start using anesthesia on babies until the mid 1980s’ …imagine that! I can barely believe it. I feel like I was in the cival war and had my leg sawed off and that noone really knows about it…or cares. But “we” do..and with knowledge comes power…and I believe that this knowledge has given me the power of understanding of why I am the way that I am. The anxiety , bruxism, headaches, nightmares and feelings of hoplessness are all byproducts of a lack of understanding by our species …that babies do feel pain…and they “will ALWAYS remember that pain”…even though noone else knows that it ever happened to them. And not telling any family member that the child is a tough little son of a B and has been through alot because they were operated on with no anesthesia and very nearly died doesn’t help either. Surgeons and people think and say …”well he or she just had a little operation and “is all right now” …makes people feel that the child doesn’t require any extra special care or attention…So what they usually get is treated like a whiner if they say they hurt or are scared …I know I did. Feel free to email me if you would like to converse more on this particular subject, I don’t know if everyone wants to read all this but I’ll continue for now. I don’t check my email as much as I should but I will try to respond. I am just so excited to know that there are others out there that understand and have had these same feelings that I have had to live with all these years..I feel like a great weight has been taken off of my shoulders. But at the same time I’m not sure how I’m going to assimilate this new found trauma information long term. But, I am pretty sure this knowledge will be posative. I spent 8 years in college psychology corses trying to understand the reason that I feel like I do and do I ever wish I had this information before that marathon. I was pretty sure that I did not want to be a psychologist because I have so many other interests but I knew I was trying to uncover something but I just didn’t know what! I also hope that I can get to those other interest also now. I had several other traumas in my life but I always suspected that there was something else…and I was always suprised that my psychological training couldn’t get me past those smaller traumas like I thought that I should have been able. Who knows maybe I can get my Masters and help some people who have these kind of repressed memories. I always thought that Freud was fundamentally correct that the first 5 years are the most traumatic and memorable years of a persons life. Although I study Victor Frankel more now…By the way it’s a great read if you know anyone who is having a tough time and wants to read about an amazing man who conquered just about every catastrophe a person could possibly have and still come out a fully functioning human being…It’s called “Mans’ search for meaning” . Have you read it? Freud also believed that that was why it was so hard to unlock some peoples neurosis and phobias because they are learned or caused when our verbal skills are at their weakest so they are eaisily covered up or masked by confusing dreams that are trying their best to cover up or hide the REAL painfull memories. Now that part of Freuds theories have been eclipsed by his more eccentric and dangerous ones…like the whole psychosexual BS and his extensive use of drugs…which the Psychiatrists seem to have taken a particular liking to today. Psychiatrists today dont seem to have the time or want to be bothered with his other work in Hypnosis to uncover these more devastating memories. (editorial) By the way …the program that jarred this memory was called “Primal Fear” and has NOT been rebroadcast….I wonder if it upset some powerful people? But if I see that is to be rebroadcast I will be sure to post it here. If I can shed any light on anything that has to do with repressed memories or transference I have extensive years of studying them that may be helpful to someone trying to work through this ….Thanks again…Dean…or what I’m thinking of changing it too because I feel reborn !…Ian ..whichever you like …
I am SO glad we are in contact! I just re-read your comment. There’s so much to respond to–I’ll pick out a few things. The way you describe our experience–having a tube shoved down our throats, being unable to fight back while a strange masked man cuts our middles open and we are glued to the mat, so-to-speak–WoW! Yes, the anger, the terror. I’ve been thinking on your description for several days. And then your spending 8 years taking psychology courses! I can relate. After I’d worked with a therapist on this operation stuff at age 26, I started taking care of young kids to learn about what their lives, especially their emotional lives, are all about. Also, I took up writing at age 22 because I was so messed up that in order to understand what was going on, I started journaling extensively. Later, during the time I was seeing the therapist who helped me (I’d seen others who hadn’t), I did a lot of art work to deal with my pain and to grow. Writing, artwork, and later somatic body work saved my life, but you can see how many years are spent flailing around trying to survive long enough to figure out what the hell is wrong! (At age 26, I found my way to a therapist’s office, telling her I was afraid to cry because I might die. I showed her my scar and said, I know it sounds nuts but I’m afraid I’ll split my stitches if I do! She was great, telling me to go right ahead and cry because I’m safe now. That started my healing–at 26 years old! I’m still healing.) Perhaps we can start exchanging some emails, for the comments get long, but I sure appreciated your anger about the way we were treated as infants. I’m going to look for that program; thanks for the info. Give me an update about what you are discovering when you get a chance.
Your Comment is just so heartening, Dean. In fact it is GOLD! Thank you for sharing your discovery of how 1950s-style PS surgery has affected you.
For years, I have felt concerned that nobody was coming forward to report having PTSD symptoms like those with which Wendy has battled. My own surgery has also left me with PTSD symptoms but they were milder and somewhat different from Wendy’s and yours.
The medical literature of the first half of the 20th century has repeatedly told me there was conflict over anesthetizing babies: some surgeons preferred ether general anesthesia, some local, those who advocated the one often give telling reasons why they didn’t like the other, and some surgeon-writers just don’t mention pain control. Without “insider” comments it is hard to get the full picture.
It now seems to me that in those long-ago times there were clear pros and cons for using both forms of pain relief, but that numbers of surgeons just went by the mantra that “babies don’t remember pain”, gave the babies curare – and didn’t talk.
I’d better devote my next post to giving some more detail about this.
You have encouraged Wendy mightily: just read her response (and her email to me)! And I’m excited. You have supplied what seems to me to be a crucial piece of the puzzle that is pre-1990s early surgery.
I do hope that you feel free to tell us some more of your story and/or ongoing discoveries, and that your discovery that your symptoms fit with your having had PS surgery helps you towards greater understanding and peace.
Hi Fred …I wanted to say that I appreciate your post and my next step will be to see if I can find any record of my surgery (if it still exists) and to know for sure if any anesthesia was used. I am only speculating but because of the Christian Science issue that may have appeared on my administration record the Drs. May of erred on the side of caution and said “maybe we shouldn’t use any anesthesia with this one….even though my parents weren’t strict CS …OR…because I was so close to death by the time they did get me to the surgery (from dehydration). It is possible that they did use ether to put me under. But as you are aware …ether was very crude and notoriously unpredictable. But then I’m not sure if my dreams/nightmares would have the surgical bright lights, the long period of people standing over me with surgical masks and the following out of body experience that I am convinced that I had…which is coincidentally also when I usually wake up. This out of body experience was revealed to me several times in several very scary experiences that I had in the early 70s’ …with the aid of a drug that was in great supply back then. Need I say more. I didn’t understand where the out of body sequences came from then …but I may have an answer now. The big difference was that these out of body episodes used to scare the hell out of me but they didn’t seem to bother my friends in the least. Lucky bastards! …just a joke. Now I may know why…mine were accompanied with searing pain and something being shoved down my neck. But I am getting off topic and as you can see I have a lot to yet discover and assimilate with this new information.
I just wanted to add that I also suffer from upper GI problems and almost constant acid reflux. I assume that is because my upper pyloric S doesn’t work right …because it never did. I can not eat onions, many spices and many many other things especially at night because they just proceed to flood back up into my esophagus…which is one of my most annoying symptoms…. and almost constant. I can not Belch! Which is a common symptom that people have without the operation have but mine is extreme. My sister used to make fun of me because she was so proud of the fact that she could sing and belch at the same time…quite a talent wouldn’t you say? I wanted to punch her in the nose! Which is another reason we have to find out it anesthesia was used or not so that siblings can at least have a little compassion for the operated on..ha! It is to the point where only alka seltzer will help and I am constantly eating calcium carbonate (tums) or trying Benadryl for relief. Interestingly i have read that there is a flood of histamine when you have an operation without anesthesia. (Hence the Benadril) ..something i intend to learn more about and post somewhere. I sleep no more than 5 to 6 hours a night (without medication) and am very often awoken by these or similar nightmares and or conditions. I will read your web blog today and tomorrow and post something else somewhere but from the small amount of reading I’ve done so far a similarity we share is that my daughter (who had this operation) is experiencing digestive problems now at 20 years old which is now becoming more of an issue for her and I need to learn more about it. It looks like your page has some information that may be very useful to me for her….but before I go on too long I just wanted to add some of that information and I appreciate any info you can add to this mysterious chapter in our lives. Bye for now …Dean
One other topic about this psycholohical pain is a strange way of getting back at parents for long forgoten trauma which I read about in a book while studing for my finals in abnormal psychology many years ago. There was a book that sounded interesting for my topic…a book like Freds lost book Which I have never been able to find again. I wish that I had stolen it from the library. But I couldnt imagine such an interesting book being taken out of circulation. I think the book was titled “Self and other defeat” and the author i think was a doctor named Marshall…If anyone knows of it I can be reached at DRHaught@hotmail.com…the general premise is that we can be so hurt by all of our parents and siblings so much that we actually refuse to accomplish anything, finish anything we start or just in general fail at just about everything…ON PURPOSE…to get back at signifigant others as if to say…”see..where all the dogmatic and bad advice that you have given me over the years has led me to be a constant failier” or ” see you neglected me so much that i dont know how to do anything successfully”..,and the one I am hearing now “see you left me alone with those butchers while they cut on me without any anesthisia…so why should I be there for you in your time of need …or be the responsibe kid that you want me to be..etc etc “. On one of Freds articles i think it was a New York times article where the Dr who eventually discovered and exposed that these infants were not getting any anestisia…the doctors were also not telling the parents that this was happening. I would bet that my parents might have been mortified and I would have gotten an appology from them like “there was nothing that we could have done”…But instead my parents received decades of my mistrust of there judgement abilities which also led to many many arguments like “why should I trust authority? Etc etc” the hospitals that did not inform the parents that their children were going to be operated on without anesthesia were as dysfunctional as they made our household and probably a good reason our medical system is still so dysfunctional to this day. It would of saved me a great deal of pain if i would have received at least a little warmth and understanding of the trauma that i had to endure…but it never did come …and my parents are dead and my brothers and sisters dont care because apparently my parents didnt care. It is feasable that these feelings of self and other defeat are linked to the PTSD or are the cause of much PTSD like symptoms because the trauma was never addressed or acnowledged. Please if anyone has access to this interesting book…it was a key pivot point in my life to know that i may be undermineing my own success to get back a one of my parents or brothers. And i would sure love to read it again….thanks ,..Dean
Dean, Wow! Thank you! I really can relate to the self-defeating idea that you are discussing. Absolutely. I had that attitude quite a bit now that I think about it. The incredible rage one feels without even knowing it. Parents leaving their children with “butchers.” Powerful! I got very little sympathy from my brother; in fact, he was very angry about my condition because my parents ignored him a great deal while I was sick and while I was in recovery. They shipped him off to my aunt and uncle’s house because he needed more attention than my parents could give, but I’m sure he felt rejected, confused, and deeply angry. My mother had sympathy for me, for she acknowledged my suffering as I recovered and before surgery but about the surgery itself, she said: “You didn’t remember a thing.” She always talked about how much she and my dad were upset and in pain. She talked about the huge disruption in their lives that my illness and surgery caused. I do think that PTSD and feelings of defeat are absolutely linked. Yes, one can use the anger over having been helpless and unsuccessful at escaping danger to try to get back at parents by being mired in self-defeat (I’ll show you!) and one can simply believe that one is unable to affect change since early on, one was so entirely defeated, allowing oneself to be tortured. A baby, and later a child, isn’t going to rationalize, oh well, they had to operate and save me. I mean, even if anesthetic were used, we were still subdued, our agency compromised. The intubation alone must have been horrendous. Please let me know if you ever locate that book. Amazing. You’ve given me a lot to think about. Thank you, Dean.
Dean,
I am so very sorry that you have had to live through such a cruel torture and its after effects in your life. I hear all of your pain, misery, and anger, and I share it.
I too have survived infant surgery without anesthesia. You can read my story on Fred’s blog here:
http://survivinginfantsurgery.wordpress.com/2013/01/10/johns-infant-surgery/
What is very important for you (and anyone else who has suffered this brand of torture) to understand is that this trauma has caused you to have a physical brain injury very similar to that caused by a stroke. The injury is what causes the PTSD. It is very crucial that you find a therapist who can help you to recover from this physical injury. The very good news is that just like a stroke victim, you can heal and rewire your brain to function around the injury. I have been seeing a highly skilled trauma therapist for the past two years and am close to a full recovery.
My therapist is located in Virginia. Her name is Kerry Leavitt and her number is 434-296-9740 x137. If she is far from where you live, she may be able to reccomend someone in your area.
You have my prayers. If you wish to correspond directly Wendy or Fred will be able to give you my address.
Peace,
John
What amazing generosity, John. Thank you for reaching out to Dean and me and to the community of people seeking answers to a question bubbling under the surface of many people’s consciousnesses: What happened to me? I didn’t know that the trauma literally causes a “physical brain injury.” This information puts a different spin on it. So is PTSD a result of a “physical brain injury” caused by infant surgery without anesthesia? Why does one have to rewire around the injury? Why can’t one rewire the injured part? And when you say the word “injury,” what exactly do you mean? I hope you see these questions as inquiry and not challenge, for indeed, that’s what they are. In any case, I am thrilled that you are “close to a full recovery.” Beautiful! Congrats! You are a role model for me! Care to do a guest post on my blog sometime? I would love that! Perhaps you could talk about an aspect of recovery. Or how your life went from down to up. In any case, much luck and many thanks. Hope to hear from you in reply to the questions asked above.
Wendy,
Thank you for your questions. Yes, PTSD is, in its physical aspects, the result of a physical brain injury caused by the cocktail of chemicals that the body releases when in an extreme fight/flight/freeze response–the same response you see in a mouse when a cat catches it. These are the same chemicals that are released at the moment of a person’s death and the mixture is unique to each person. The chemicals in effect cause a chemical stroke. This damages certain neural pathways in the brain and traps toxins in the somatic nervous system. In addition, the traumatic memories are encoded in a different area of the brain than normal memory and (I think) encoded via a different chemical process.
Since the chemicals that cause the injury are unique to each person, the injury cannot be treated with drugs. The most effective treatments involve taking the brain and body through the traumatic experience in ways that allow the mind and body to re-encode the memories in a non-trauma oriented way. Your term “re-storying” is very apt as re-narrating the experience(s) and reforming the narrative is a key aspect of treatment.
My therapy has focused on moving the traumatic memories from the right brain to the left brain via EMDR and on doing “parts work” under the Internal Family Systems model.
http://en.wikipedia.org/wiki/EMDR
http://en.wikipedia.org/wiki/Internal_Family_Systems_Model
“Wire around” may not have been the best choice of words. I think that you can rewire the injured part to some degree, but, like in stroke recovery, the re-wiring seems (to me) to have an adaptive component that will always be present in some way; i.e. it takes practice and concentration to use the new/repaired neural pathways–this has gotten easier for me with time.
I do believe that PTSD also has a strong spiritual and emotional component to its wounding; however, it is very important to treat the physical aspect of the wound so that one can be strong enough to do the spiritual and emotional work.
Peace,
John
Incredible information. It’s so great to not only hear of your success but to experience the clarity and confidence of your understanding. It’s also heartening to hear that the word “ReStorying” fits, to your mind, given what you know so deeply about the process of healing from early trauma. I’m continually working on myself and finding relief and freedom, but I’d like to do some more concentrated work on relieving myself from the symptoms of PTSD and your work is inspiring. Thank you for the clarifications and for the confirmation that freedom after trauma is possible. And thank you again for sharing your story on Fred’s blog.
Great info. Lucky me I discovered your blog by chance (stumbleupon).
I’ve book marked it for later!
I’m glad you found ReStory! Looking forward to hearing from you and connecting once you get a chance to read some more.