As I am slowly reaching out and reconnecting with my former patients and old friends I am needing to explain repeatedly how I am, how I got here, what's happening now and where is this all going? All very reasonable but the retelling is painful in itself and as pain is the central theme of my journey I wish to lessen it by recording here the essential questions so that we can skip most of "that" and talk about things less painful and more joyful.
Pain.
Pain is a brain event. We know what "turns it on" in most cases, but we do not understand how it turns off. We do know some people are born without the neurons that transmit pain messages to the brain, and they never experience pain. We also know in some people pain (particularly back pain) gets turned on by a physical event, and that the pain never turns off for a prolonged period.
My Pain Journey.
I was born with a cleft lip and palate. I was the third son to my parents with a cleft palate, so they knew the drill pretty well by then. At that time the plastic surgeons were delaying the first repair until the baby was 6-9 months old so that the baby's mouth was bigger and a bit easier for the surgeon to work in. The plastic surgical unit also had a policy that the parents were to be separated from their child until 1-2 days past the surgery so that they were not upset at how their child looked.
Mum knew what was going to happen. She knew that I would know she wasn't there and that I would cry - risking tearing apart the sutures that had been carefully placed to achieve a good cosmetic and functional child's mouth. She had nursed two children through this procedure previously, she wasn't going to be upset by my appearance. However Ward Sisters rules were not to be over-ridden no matter what.
So it happened. I cried. I cried in pain and my mother was not there to console me. I tore my sutures. I was then taken back to theatre where the frustrated surgeon did a rush job resulting in a poor cosmetic outcome. Thus I had two further trips to theatre whilst I was still a toddler in an attempt to achieve a better cosmetic outcome.
The period of ages 2-3 years is a critical period in which the child forms the idea that they are a separate being to the world around them, and that there are other beings who may come and go. They learn that they can influence the behaviour of others around them. Unfortunately during this period I suffered painful surgeries, and learnt to use my brain to suppress the pain messages so that I could get on with my life.
One of my earliest memories was of a nurse threatening to smack me if I did not stop crying. So the message was clear - don't verbalise your pain or you will be punished. There were many other such messages. When it came time to have the sutures removed (a painful process) I was told to be still and stop wriggling as that was only making things worse - the message being if you are good and still this will hurt less.
I learnt my lessons well. By the time I was 14 I endured a 75 minute procedure under local anaesthetic in which the surgeon removed a tooth, cut a trench hole into my palate to locate the adult tooth that was in the wrong place then try to put it in the place now vacated by the removed baby tooth. Hmmm, hole too small. Chisel bone out. Place tooth and suture everything up. At the end of this procedure the doctor and nurse both complimented me on how well I had handled what they had done to me.
Yes, be good and deny the fear and the pain and people will be happy and say positive things to me. Unfortunately they lied. The better you are at denying the fear and pain the more terrible (painful) things they do to you!
So I have for a very long time been using my brain to suppress pain. It is still doing it today. It has never received the message that things have healed and that the pain has stopped. For as far back as I can remember if I cut myself whilst preparing food I only notice when there are smears and spots of blood - here, there and everywhere. Sometimes there has been so much blood I have had to wash my hands in running water in order to find where the cut is. There was no immediate pain signal, or rather there was but my brain is already suppressing pain signals so one small slice is nothing compared to the rest of the pain it is working on.
Post Traumatic Stress Disorder.
I have taken this definition of PTSD from the American National Institute of Health:
PTSD is a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.
It is natural to feel afraid during and after a traumatic event. Fear triggers many split second changes in the body to help defend against danger or avoid it. This "fight or flight" response is a typical reaction meant to protect a person from harm. Nearly everyone will experience a range of reactions after trauma, yet most people recover from initial symptoms naturally. Those who continue to experience problems may be diagnosed with PTSD. People who have PTSD may feel stressed or frightened even when they are not in danger.
My PTSD Journey.
I'm sure many of you can already see where I am going. I talked above about fear. I have early memories of listening to the footsteps of the nurse coming down the corridor. "Are they coming for me, what painful things are about to happen?" I learned to suppress my "fight or flight" response that the definition above talks about.
There is also one very unfortunate event. I was eleven and we were at Middlemore Hospital seeing the orthodontist who was beginning planning for the braces he would fit to my teeth. A mould was going to be made so that he could continue to study it in his planning, and also provide a marker from start to finish. The nurse mixed the mould material with too much water, so that when she placed the mould tray into my mouth it began oozing down my throat and choking me.
I tried to get her attention and was rewarded with a stern "Be quiet! Lie still!" Finally, as my airway was about to be overwhelmed by the oozing mould mixture and I would die of asphyxiation, I forcefully vomited it out. Where upon I was told off for making a mess! I protested. The orthodontist intervened and shooed the nurse away. He helped clean me up and explained the error that had occurred. He reassured me that he would do it right and asked me to lie back in the chair whilst he did a new mould mixture. Fight or flight? I had no choice, I could do neither.
So slowly over the last several years as my brain has finally reached saturation point I have been having moments of meltdown - total fear of what painful thing is going to happen. There isn't any actual painful thing about to happen. My brain is using triggers it learnt during my childhood and applying them to events that are totally disconnected. There is no threat of danger but my brain has lost track of present day reality and is applying past learned experiences.
Fortunately I had the good experience of meeting an amazing man who has been a cardiologist, a GP and now a psychotherapist. We have been working together and it has been because of his help that I have held it all together and put on a brave face and carried on working for as long as I did. And now, given where I am in my life, I am looking forward to gathering up some energy to confront some of my demons and vanquish them rather than letting them rule my life. This will take some time, but I do now have the time to address them.
Where Am I Now?
I am currently taking 17 pills a day. Most of those are aimed at trying to calm the pain nerves down, and they are definitely helping. My psychiatrist has treated people like me, traumatised from multiple surgeries at a young age. He has gently guided me to discover for myself what is important and what is needed. He has agreed with my decision to consider myself retired. Whilst he expects improvement he agrees that this will take years.
So I am back to being a patient again. I am fortunate that I have income protection insurance so that money is not a worry for me. I am also blessed in having a loving and supportive partner in Andrew.
We are planning to get married this year on the 25th anniversary of our first date. This will be a very small event with less than ten people invited as I simply could not cope with more. Not even family members of Andrews and my family have been invited. My apologies to them and you. Perhaps we may find a way to have a few small gatherings in the months following our wedding so that some of you can celebrate this milestone with us.
The Future.
The future is unknown. I am taking my time to slowly heal and perhaps one day become a more useful and functioning member of society. I have overcome an awful lot to have achieved what I have already done and am relaxed in knowing that I can continue my journey, take the time to heal, and then discover what comes next.