Spondylo Carpal Tarsal Synostosis Syndrome. “Easy for you to say” I can hear my dad interjecting with a wry smile. This was the diagnosis I was eventually given after several years of hospital visits and X-rays from about the age of 5. A unique genetic condition affecting at least 25 people in the world. I guess that’s why I’ve never met anyone else with this particular condition, but feel free to pipe up and say “hey” if you are reading this and happen to be one of the other 24!
The Spondylo part accounts for the scoliosis (a common condition and not so unique) which is the twisting and curvature of the spine. But the Carpal and Tarsal part, meaning wrists and ankles, I’ve never fully understood. And Synostosis is something to do with the fusion of adjacent bones with some sort of bony substance… You can tell I’ve researched this well… But then again, that’s not the point of this post. It’s the psychological effects rather than the physiological that interests me the most.
I feel the most relaxed and at ease around people during the winter months. It’s a much more acceptable time to hide beneath the comforting embrace of a winter coat of scoliosis hiding armour. Summer time doesn’t give me that privilege unfortunately and I feel like there is a big light being shone on me. 2,880 trillion lightbulbs worth of light. Thanks sun! A mere t-shirt is shoddy armour at best and I can expect to spend around 90% of my day being self-conscious about my body. The way I’m walking, the way I’m standing, the way I’m sitting. I feel the most disencumbered when I’m playing music or dancing in a crowd of like minded people. In this day and age of poor body confidence, body shaming and unrealistic advertising campaigns, I know I am not alone.
I’ve spent most of my life trying to hide my scoliosis from the world, pretending it did not exist. Being so determined not to let it stop me doing the things I wanted to do. (A couple of years after I had spinal surgery, and much to the horror of my mother, I rode my bike down a hill towards a huge dirt jump and then took a bite out of my handlebars… So long incisors, you were great!) I can see now that this drive and determination has allowed me to achieve so much, to get out and travel solo around the world and to make a career out of helping people with music. For this, I am truly grateful.
So what inspired me to write this piece? Well allow me to become a massive hippy for just a moment.
One night, I had made a request to my subconscious mind to show me in a dream how I might start to accept my body. That night I dreamt that somebody handed me a T-shirt with the word “Scoliosis” written on the front of it in bold letters. I took this to mean that I should wear it loudly and proudly. To stop hiding and to talk about it.
I guess an important thing I want to raise in this article is about trauma and mental health. Around 1 in 5 people who have undergone spinal fusion surgery develop some level of post-traumatic stress disorder (PTSD).
I am going to try and write this next bit without passing out, crying or being sick.
Spinal fusion is a procedure where bone grafts are used to fuse together the vertebrae in the spine so that it heals to form one long bone. Metal rods and screws are often implanted to assist the healing process… Yep, there are big f****** screws lodged in my spine. I’m gonna go lie down for a minute…
Ok I’m back. Sorry for the expletive. Thinking about this stuff written above makes me feel very peculiar. My body tenses up and I start to feel light headed. A deep seated feeling of despair emanates from my chest and I’m scared of what might happen if I let this despair take over. I become hyper aware of my spine and its lack of flexibility. I convince myself that I can feel the metal rods and screws in my spine and I want to rip out these things that have violated my body. But I can’t do that, for they saved my life. And as my therapist once said, I must learn to make friends with them.
As I alluded to earlier, part of my defence mechanism as a child was to hide it, to pretend it didn’t exist and it served me well. But I believe the subconscious mind knows when one is ready and able to unpack these experiences and emotions and to begin to heal.
I had been volunteering for a couple of weeks at the children’s hospice, playing relaxing music to the children and nurses when I had my first and thankfully only flashback. We were in the sensory room which is a room filled with lots of twinkling lights, bubbles and a waterbed. I set up in the corner as usual and started to play to the small group of children. About halfway through, one of the children started coughing and wheezing and a machine was beeping urgently. The nurses sprung into action, adjusting the child’s breathing apparatus and applying suction. Suddenly, with all the sounds around me, my mind was transported back to a hospital bed in intensive care. I was lying on my back, eyes half closed and struggling to breathe. I could see this tube protruding from my mouth that appeared to be blocked. I watched with dread as what looked like a black ring traveled down the tube and down my throat. Whatever it was then began to hoover out all the mucus trapped in my lungs – which feels just about as pleasant as it sounds! Writing about it makes me feel queasy even now. Whilst this mind trip was going on I was unconsciously playing the Hang as the nurses restored calm and order to the room. Everything was fine.
Afterwards, sitting in the car, I replayed the experience in my head and reassured myself that I am healthy and that I don’t need to feel that fear and dread anymore. Cognitive Behavioural Therapy (CBT) techniques I had learnt from the tinnitus days came in really handy here. Similar incidents have happened at subsequent visits to the hospice but none have triggered any further flashbacks.
I am unsure how to finish this post as there doesn’t seem to be a neat little ending I can write about. I guess this part of my journey is still a work in progress. I would like to say that I have come to love my body and its scars, but that is not true. But I can say that I have found respect for my body. Despite all it has gone through, and the contempt I have often treated it with, it is still here. So fair play to you, body.
Written by Andrew Ford 15/01/2017