My Spinal Cord Injury 'Story'

This month marks six years since I had my spinal cord injury, so I thought I'd share my story. I apologise if this isn't all clear or makes little sense in parts, it's difficult to open up about it, talking about what I've been through is always incredibly hard and certain parts are a blur.

In 2011, I was paralysed. The pressure and severity of my kyphosis crushed my spinal cord. It was a slow process, I began to lose the feeling in my legs, I would fall and my legs would give way. We saw many doctors around my local area, they hadn't a clue. There was one doctor who accused me of faking what was happening to me.

It was a scary time for my family and I, we didn't know what was happening. I had a lot of falls, as I stated above but one fall did the most damage. I remember clearly, I just got home from school and got out the taxi and my legs completely gave way beneath me. After that everything deteriorated quickly. I couldn't walk hardly at all by this point. Not long after that I was admitted to our local hospital.

The hospital kept in contact with London over a few days. MRIs were taken and I had numerous tests done. All the information collected and scans were sent directly to my scoliosis surgeon, Mr Nordeen. Within less than a few hours of him receiving them I was rushed up to London at 2am.

I don't remember much of the journey to the hospital, I was on some strong pain killers so I slept the majority of the way. One thing I remember clearly was not being allowed to move, I was in something like a cacoon that wrapped around me. At that time I didn't know how bad things actually were or what was coming my way.

When I got to London, I was taken straight to the intensive care unit and within less than a few days (it may have been a day or two after arriving), I was operated on. I knew before the surgery I was in for a major operation but that was about all I knew at that point. Things around this time are a huge blur, it was a lot for someone of twelve to really understand and take in.

I have slight memory from the anathestic room before my surgery. I had been given a medication to help me relax beforehand, I've never been good when it comes to being put to sleep, and I seem to always come out with things I shouldn't when I've had it. My surgeon was telling me and my family what was happening and according to my parents I said to my surgeon 'you know, you have a really big nose?' repeatedly, which is probably not the best thing to tell someone who's about to perform major surgery on you. He just laughed, held my hand and said 'Okay Katie.' and he explained to me I wasn't going to walk again and if there was the possibility it was less than 2%.

I was fitted with an NG tube before I woke up from the surgery, I was extremely underweight and malnourished and weighed less than four stone, which was extremely dangerous in my circumstances. When I first woke I was in the High Dependcy Unit, where after a short period of time I took a turn for the worst. I was quickly rushed into the Intensive Care Unit where my chances of surviving were low and my parents were told to ring my family back home to come and say their goodbyes to me.

After a three week stay in the Intensie Care Unit, I was finally well enough to go back to the children's ward. I was a very long way from being considered well. I was still very closely monitored, I wasn't allowed to move, sit up or get out of bed. I had numerous pieces of equipment to help my lungs and relied on tube feeds and lots of medication.

During my stay in intensive care, a doctor noticed something with my breathing, sleep etc and decided to do some tests to see if there was something underlying that could cause some issues I was having - the amount of migraines I had, how I breathed asleep, my oxygen levels etc. It turned out he was right, I suffer from Night Time Respire Failure, meaning when I'm asleep my body poisons itself with carbon dioxide. Since then I've had to sleep with a machine to make sure I'm breathing 'correctly.'

Ten weeks in total I spent laid flat in bed, until finally I was allowed to slowly sit for the first time, the process for doing so had to be done at a slow pace, I first started out on a tilt table that was slowly risen into a more sitting angle. It was a pretty strange feeling to be sat for the first time, everything was spinning, I felt horribly sick, dizzy but it also felt pretty great. I was one step closer on my road to recovery, and one step closer to being home.

Before I was sitting up, I was fitted with another back brace, which had to be worn for the whole day - only allowing it off for showers. Much like the one before, it went up around my neck and covered my whole upper body so my movement was completely limited which at times became pretty frustrating.

Once I was out of bed I was put into intense physiotherapy. I had to learn how to do everything, to transfer from my bed to a wheelchair, wheelchair to bed and later on I learnt transfers from my wheelchair to car - which for me was one of the most difficult transfers. After less than a few weeks, I 'stood' up for the first time. It was painful, that's something for sure but was an achievement, another step forward in my recovery and another step closer to going home.

I spent almost five months in hospital, only seeing my dad and sister at the weekend which was something that I found hard. On a Sunday when they left many tears were shed. I hated being away from my family, we've always been close and being apart for so long wasn't easy on any of us.

Before I went home officially, I was allowed weekend leave - I was transported to and from home via an ambulance where I was laid down. It felt great to be home for the weekend but was also slightly terrifying, I was use to the comfort of the hospital and adapting to home again was hard.

We had to move house after my spinal cord injury, ours just wasn't built for someone in a wheelchair. On the weekend I was home, my parents had sold some of our furniture and it was collected. I remember crying when seeing it leave the house and blaming myself, I didn't want to leave the house I had spent my childhood and created so many memories.

Once I was home after spending all that time in hospital so far way from home, it felt great but it was also terrifying. I wasn't considered healthy at all, I had a long way to go until I would be and even during a number of years since the spinal injury, my life was still in question. I spent a lot of time in and out of hospital with infections, bugs, dehydration but I loved being home, I was so happy to be home with my family again.

One of my biggest steps was going back to school for the first time, I was terrified after being away for so long. Everything had changed and all my friends moved on, it was hard to mix back into friendships and school in general. I didn't really have many friends, school was a lonely place for me. I never went back into school full-time either which made things much more difficult.

In late 2012, early 2013 I had a mental breakdown. From what the doctors had said everything I'd been through since I was young, had finally became too much and I crashed. At the time I was at my worst, I was already in hospital with an infection and that's when the doctors, nurses and my parents noticed something was going on. I wouldn't eat, drink or sleep at all and I wouldn't talk to anybody either. I spent hours of everyday reading, or doing a word searches.

I was soon diagnosed with PTSD and anxiety. I wrote a list of what made me feel anxious and it was over four pages long. I spent a few weeks in hospital as I was terrified to leave and then once I was home, I was terrified to sleep in my room so I had to move into our spare room for a short time. I hardly left the house for a number of weeks, mostly only leaving for sessions with CAMHS. We had a team come to the house to try and help with my anxiety of it and make me feel more at ease, in which after months seeing a therapist, I slowly got my anxiety under somewhat better control.

I was NG fed for about four and a half years, gaining weight was a difficult task. I never seemed to manage to keep the weight on, loosing it quicker than I gained - something that didn't help was how often I was physically sick. I could never seem to keep much food/feed down, what didn't help the situation is I never felt hungry. After the NG was removed, I had to drink complans and fortisips for two years to keep my weight up and ensure I was getting enough netruiton. The doctors after investigating further believes my eating habits have been formed through a lack of control, unintentionally I began to eat less and less, next to nothing at all which ended up making me malnourished.

Six years later, I'm still here. I've gotten through what was meant to kill me, to paralyse me. I'm not considered healthy, I'm still monitored closely by doctors but I'm thankful I'm still alive and doing things nobody ever thought I would. Although my future is incredibly uncertain, I could wake up tomorrow and be completely paralysed again.

I often have thoughts where I question what my life would be like if none of this had ever happened, if I had never of had NF or scoliosis in the first place but as cliché as all of this has shaped me into who I am. I have done some amazing things and I have met some wonderful people, especially in the years since my injury and I wouldn't change anything.