It’s Been 11 Years, I’m Still Recovering
Trigger warning — PTSD, surgery, anxiety.
11 years ago I had major spinal surgery to fix my spine that was well on its way to restricting my lungs so much that I wouldn’t be able to live a normal adult life. I was 13 when I was diagnosed with scoliosis. A condition that, for an unknown reason, causes the spine to twist and curve in three dimensions. As many teenagers do, before I found out what was going on inside me I thought I was invincible. I had no idea that my own body was betraying me from the inside, that it was literally losing the ability to hold me up as time went by.
I became a body not a human
At the time, I was living in France and went through a healthcare system that was very much centred on treating the condition in an isolated fashion, as opposed to looking at the patient as a whole being. My illness came to the forefront when I was going through the usual difficult stage of being a teenager, as it does for many scoliosis patients. I tried to make doctors understand that everything was moving too quickly, that I wasn’t keeping up emotionally, but no one listened to me. Eventually, I was sat in a consultation room with my surgery being scheduled right in front of me, whilst I was shouting that I wasn’t ready. The thing is, my body needed to have the surgery, and it needed it urgently. And whilst now I understand that, I still have horrendous flashbacks to that appointment, it was the first time I felt truly out of control of my body. I felt absolutely naked, and that only got worse as the surgery approached.
Before any kind of surgery you have a whole range of tests, the memories I have of the period running up to my operation are all of the time I spent at the hospital or with various doctors, surgeons, consultants, physiotherapists, you name it, it felt like I’d been prodded and poked at by every medical professional under the sun. The pinnacle of this process came on the 18th of April 2008 (I still remember the date, go figure): I went to the hospital as a day patient and had so many tests, I had no chance to process any of it. I was with my mum, following this schedule that was a full A4 page long. It started with x-rays, I thought those would be easy, by then I’d already had dozens of x-rays taken. But this time they bent me as far as I could possibly go to see how flexible my spine was, they just used physical force and put a frame around me so I couldn’t move whilst they took the images, no sedation, nothing. After that, I had a CT scan, blood tests, and then it was time for a bunch of meetings. The first was with the anaesthetist, again, I was being treated in an adult hospital at the ripe old age of 13. The doctor was lovely, but looking back obviously didn’t know how to explain the procedures to a teenager. I honestly had no idea what was going on really, they would as if I had any questions, I would say no. I didn’t want to ask anything because I still didn’t want to go through with it. Then I met with a ward nurse, a kind-looking older lady. She asked to check that I had all my tasks ticked off on my list, she was the last appointment of the day as far as I knew. Turned out we had missed off one appointment, so we went to the neurology unit for that.
I went into a room with my mum and a doctor, he took all sorts of measurements and marked my skin with a black marker pen and then put needles where all the dots were. On my back, on my arms, my legs, my chest, my face, they were everywhere. I think they were linked up to wires, I don’t really remember. I didn’t know what was going on. Then he made my mum hold an electrode on each of my wrists and ankles, one by one, for what felt like an eternity. I don’t think I was crying, I was absolutely terrified. I was scared to move. I was scared to look at what was going on. I was just laying there, with my thumbs and toes intermittently twitching as the electricity shocked my nerves. The doctor kept telling me to relax, that the test wouldn’t work if I was stressed. I was trying so hard, but I didn’t know how to relax. I ended up imagining that I was at the stables, I used to love horse riding, and eventually managed to relax enough for the doctor to get the reading he needed. He took the needles out, and as I left the room I felt like I was going to collapse. In hindsight, I think I was having a panic attack.
The rest of the day was uneventful, I got home, exhausted, and tried to carry on with my new normal until the operation rolled around. I had physio all morning on Tuesdays and Thursdays, I had to have blood taken to be transfused back into me during the surgery once every two weeks. I only ended up doing it twice because I fainted the second time. I’ve been scared of needles and fainting ever since.
A living nightmare
By the time my surgery came around, I was convinced that there was going to be one of two outcomes: either I was going to be paralysed, or I was going to die. The day before, I was being taken to the hospital in the afternoon, so I had my “last meal” with my family. I chose a roast beef dinner, it was a hot day in June, but sometimes you’ve got to do what you’ve got to do. The drive down to the hospital was uneventful, I didn’t feel too nervous, because in my mind’s eye I still had the chance to back out at that point. I could still call it all off and we could start again when I was ready.
We checked in, my mum and I made our way to my room. I don’t remember much of the evening, I just remember laying in my bed, deciding that it was time for me to leave, that it was now or never. I told my mum, “I’m going, we’re going, do you reckon the doors are still open downstairs?” She did her best to calm me down, but I was absolutely beside myself, all I wanted to do was leave and no one would let me. I ended up spending most of the night walking up and down the corridor outside my room, with my mum, enjoying the fact that I could still feel my feet. In hindsight, I wish I’d spent more of that time bending and stretching my back, that’s what I really miss now. It’s the simple things in life. The clearest memory I have of that night was standing at the window at the end of the corridor, looking out, and to this day I swear there was someone in one of the other hospital buildings going through a very similar thing. Looking out of their window, the only way they could get to the outside.
The morning came around, I had to shower with this antiseptic liquid, so I went off to do that. I hadn’t had anything to eat or drink since midnight, I’d slept for about 15 minutes, and I was beside myself with fear. The nurse came in to give me pre-med, and that’s when it finally hit me that I was well and truly trapped. I was begging anyone who would listen to let me leave, telling them I wasn’t ready, I didn’t want to have it done, not that day. I would get these 5-minute bursts of relaxation, I’d try to get comfortable on the bed for a minute and then it would hit me again. When it was time for the porter to come, I didn’t even think about it, but I knew it was my absolute last chance to get out of it. I was hysterically crying the whole way to the operating theatre, the porter was singing ‘Everything’s Gonna Be Alright’ by Bob Marley. Everything was not going to be alright in my mind though. I said goodbye to my mum, and they took me through into the room where they gave me the anaesthetic.
I was shaking, still telling everyone I didn’t want this. Nobody would listen to me. They put a cannula in my right arm, and seconds later a mask over my mouth, I pushed the mask away and turned my head to the other side. And then I woke up.
Recovering, mentally
After the surgery, I went up to intensive care, gave my family a thumbs up. The first thing I did when I woke up was ask whether they’d actually done the procedure, and then I asked what time it was. I don’t know why, it obviously just felt important. Then I moved my toes and could see the sheet moving at my feet, that feeling was hands down the most relieved I have ever felt in my life so far. Then I put my had on my head and felt the massive bump that I later found out was a pressure point because I’d been put on a frame for them to do the operation and had been leaning on my forehead the whole time.
The following weeks were pretty gnarly, I would have good days and bad days. Some days I managed to walk a little bit, other days I would lay in bed crying most of the day, embarrassed that at 14 years old I couldn’t even get myself to the bathroom on my own. Over time it got a bit better, two weeks later I went home. It was hard work from then on in, I was in a lot of pain, I had to learn to live with a new body. I had to learn how to do mundane things like picking things up, putting shoes on, getting dressed on my own. I basically became a toddler again for about four or five months, and I absolutely hated it.
After about three months, the pain started. I was in pretty constant pain for about two years after the operation. Initially, they thought it was an infection. It wasn’t. Then they thought it was muscular. It wasn’t. Then they treated it as neurological pain. Those pills helped a bit, but I felt sick when I was taking them. I was miserable. My life was revolving around my spine, whenever I would see anyone I knew they would ask how my back was. Not how I was, just my back. When I go home this still happens, I’m still the girl who had the back brace and the big operation to my neighbours and family friends. I know I’m so much more than just that though.
The physical pain lessened with time, a lot of physiotherapy, and in all honesty probably just increased pain tolerance. But I have been in therapy on and off pretty much ever since the surgery, to try to get over it. I have been diagnosed with depression, generalised anxiety, PTSD, phobias, you name it. And these are the scars I’m ashamed of. I don’t care about people seeing the scar that runs down my back like a zipper, I don’t care about people noticing that I stand differently, but I feel weak when it comes to admitting how much having the surgery affected me mentally. No one really tells you that this could happen. I was scared of the potential side effects that I was told about, not about this. Not about the fact that I would be left in an emotional state that would make me jump every time I hear a machine that sounds vaguely like a heart monitor. That I would let my vaccinations lapse because I can’t face needles anymore, or that I would have apoplexy every time I need a blood test. So there it is, I had spinal surgery 11 years ago, and my mind is still recovering.
