I have been living with my spinal cord injury for exactly 10 years now.
Ten years.
When I actually stop and think about that, it’s hard to believe.
It has been one hell of a ride.
There have been moments I never thought I would get through, moments that tested me in ways I never expected, and moments that changed me forever. There have been highs, lows, setbacks, breakthroughs, laughter, tears, frustration, determination, and plenty of moments where I simply had to take a deep breath and keep going. So this is my story.
My story
Back in 2016 on exactly the 1st February, I suffered a brain and spinal cord injury. But before this, I had a normal stress free life. I attended mainstream school and I had a group of friends that I hung out with every single day. I always used to keep my school life and hospital life separately. So only close friends new how much I went through due to missing so much school because of hospital appointments here and there. It was a lot to deal with at such a young age. When I was born I was diagnosed with coginetal heart disease which meant that I was born without a pulmonary artery and valve. I had open heart surgery at 5 weeks old which was successful.
When I was 7 I was diagnosed with Chiari Malformation type 2. Chiari malformation is a condition where the lower part of the brain (the cerebellum) pushes down into your spinal canal through the large opening at the base of the skull. This pressure can block the normal flow of fluid around the brain and spinal cord.
The main symptoms that I had was a really bad headache and neck ache constantly, sleep apnea and Migraines. In 2010, I had back decompression surgery, this was when the surgeon removed C1 and C2 and replaced them with pins. That went well but I remember feeling so ill. I had this bandage wrapped around my head and my hair was a mess due to the amount of glue that they put in to secure the bandage. But so many friends and family came to visit me on the ward which I was son thankful for.
Unfortunately at the start of year 8 in 2015 I began to walk really unsteadily on my feet to the point where I could hardly walk at all. But my school was brilliant. They saw how much I was struggling just from going to class to class. So they allowed me to have a little room downstairs so that I didn’t have to go back and forward all the time. My best friend would come and spend time with me any chance she could get.
On the 1st February 2016, I had the Frontal Decompression surgery which was one of the worst decisions of my life. 24 hours after the surgery I lost the use of my right side. The doctors thought that I had a stroke maybe so they did a MRI coukkdnt see anything obvious then the next day I just couldn’t swallow. I kept getting a lot of chest infections and secretions wouldn’t stop pooling out of my mouth due to my swallow. I had quite a lot of red alarms where my respiratory drive was just failing. I had coughisist like all the time which then tired me out. It was just a really scary time. I went back down to ICU and that was when they did another MRI. By this time I was practically out of it.
Apparently what happened was, where they created the gap when trying to remove the odontoid bone, the brainstem slipped into the gap that they created which was then adding more and more pressure and swelling on top of the spinal cord. So I couldn’t breathe on my own and I was instubated.
On the 1st April I had a tracheostomy put in which stopped the secretions trickling into my lungs. That worked but it didn’t stop the deterioration. The doctors had 2 choices either send me to hospice care snd let me go die or repeat the surgery and hope that they can get rid of the odontoid bone. They did and I got through but unfortunately by this time, I was paralysed from the shoulders down I Couldn’t move anything but my eyes. It was just horrendous.
I stayed in hospital for 9 months. It wasn’t too bad. The nurses were all so lovely. I made friends and every day we used to watch The Pitch Perfect films back to back. I remember going to Kings Cross Station on Platform 9 and 3 quarters. That was fun. The nurses and everyone on the ward threw me a birthday party in the play room for my 14th and everyone came. It was so nice.
Transferring to the Children’s Trust
In October 2016, I transferred to the Children’s trust which is a rehabilitation centre in Tamworth and it was amazing. Every day I had a packed schedule. There was either physio for an hour and school in the morning. It was just busy busy busy, It was the hardest thing to get used to going from the hospital to the trust. But after about a month I got used to it. I was allowed to decorate my room any way I wanted it with DVDS, books and pictures. It just reminded me of a university room.
I loved the winter there because when it snowed it snowed big time the snow was so deep that when you stepped into in your whole foot would sink. That was how thick it was. I came home Christmas which was lovely. One of the staff at The trust had to come in case of emergency but all in all it was lovely. My best friend visited me on Christmas Eve too, I left The Tryst with just being able to move my left arm and wriggle my fingers. With all the therapy work and all the strength that I put into this made me come out as a stronger person and honestly I am so so proud of myself.for everything I have achieved.
Coming home from rehab
Unfortunately due to the circumstances my friend group didn’t stay friends with me due to how complex I was. I was ventilated 24/7. I lost my voice I couldn’t do anything by myself whatsoever. I mean it did hurt quite a lot but honestly I am so so grateful that my best friend has stayed with me all this time. The first few years were tough. I hardly ever went out because I didn’t want to bump into anyone that I knew before the injury so I just kept my self isolated from the world. I started school and that was really the only time I left the house.
The one thing I hated the most was attention. I hated people treating me differently just because of my injury. I know they mean well but back in the early days I remember that I used to avoid parties and weddings as much as possible and I still do that now. It was just hard. A lot to process but I still manage to complete school and my GCSE qualifications and my Duke of Edingburough bronze award which is amazing.
Starting college
After I finished school, I started college and that’s where my life kind of turned around. Although this college wasn’t the college that I was hoping to go in the future but I gained a lot out of it. It made mevsee and entire different perspective. Suddenly a switch in me just clicked and I became so much more confident in myself. I started to advocate for myself writing emails or complaint emails when I think im not being treated right. I even started to like working out and I even created a Facebook page to update family and friends on my progress. I have just grown so much throughout my college years.
Where I am now
Oh my god where do I even begin. So I can stand on my own now. I can move my whole left arm. I attend Hothfield which is a private neuro physio centre once a week and honestly im just so proud of myself. I can breathe om my own now. I have still got the tracheostomy so I still can’t tap at the moment, ent but that is ok because I have found other ways to communicate with the world.
One thing I have found in healing is live music. I am a huge fan girl. I go ti concerts at least twice a year. I just love the whole vibe and the dancing its just the best. Whenever I go to a concert, it always makes me forget reality a little bit. I went to my first concert in 2023 and its one of the best decisions in my life.
Basically right now my job. is to just live life to its fulles and enjoy every single moment of it because you never know when iy might come to and end.
Lifes too short.
There was a time when I thought my life was over.
A spinal cord injury can change everything in a moment. The things you once took for granted — walking, moving freely, doing everyday tasks without thinking — can suddenly become things you have to relearn or find new ways to do.
When my spinal cord injury happened, I didn’t know what my future was going to look like. I had questions, fears, anger, and uncertainty. I wondered what kind of life I would have now. Would I still be able to do the things I loved? Would people see me differently? Would I ever feel like myself again?
In the beginning, it was easy to focus on everything I had lost.
But slowly, I started to realize something important: my injury changed my life, but it did not take my life away from me.
I am still here.
I am still me.
And I still have a future.
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