I have been wanting ti share my story online for a while now but I get super embarrassed when people read or watch my work but recently I thought fuck it and I just decided to go for it and so I created this blog where I share my life as a wheelchair user and my journey towards accessibility and independence.
My Story
When I was 13 years old my world changed drastically. You see I had an amazing childhood. I went to mainstream school, I had so many friends, I was out a lot to either shopping or swimming. I loved swimming. I loved dancing too. I used to go to a dance club festival in primary school every year. It was so much fun. As well as school, I did spend a lot of time in hospital. Specifically Great Ormand Street Hospital ever since I was a baby. I was born with a Cogenital heart disease which was where I was born without a Pulmonary artery and valve. So every now and then, I had to have check ups to see if everything was still working properly.
When I was 8 I was diagnosed with Arnold chair malformation. tThis was when everything started to go down hill. In 2010 I had surgery called Back decompression surgery. This surgery replaced C1 and C2 vertebrae with Pins. This was very successful buy afterwards I was so so ill. It was horrendous, I had a few friends come to visit me once I felt well enough and honestly I am so so thankful for that. It made me so happy. I was in hospital for about a month but so many people came to visit my friends my family everyone.
But unfortunately I started becoming unwell back in 2015. I wasn’t walking really unsteadily on my feet to the point that I couldn’t anymore. My school was amazing though. They supported me a lot like they allowed me to have a little.roomm downstairz where I didn’t need to keep going to different class rooms all the time. that was a massive help. In 2016 I had frontal decompression surgery. This was when things went catastrophically wrong.
24 hours after ny surgery I lost the use of my right arm. The doctors thought that I had a stroke or something but then a couple of days later I just couldn’t swallow. My respiratory drive went and I just couldn’t breathe by myself. I S’tarted to get alarm bells all the time when eventually I was put in ICU. Everythingng was just failing. I had a tracheostomy inserted om the 1st April 2016. But unfortunately the surgeons had to option. either let me go. Die or repent the surgery again to try and get rid of more odontoid bone. So they did the surgery and I pulled through. But I was left paralysed from the shoulders down. I couldn’t talk anymore or breathe, I was trapped in my own body. I stayed at Great Ormand Street for 9 months and I had the best nurses they were so fun. I even made a friend there and we would watch all the Pitch Perfect films back to back.
The Children’s trust
on October, I transferred to a rehabilitation centre called the children’s trust. The place was incredible. You had physio everyday OT, School. all in one building `It was proper intense schedule. I left there with being able to move my arm and gradually overtimevnmy movement has just improved more and more.
Coming home after being away for a year
Coming home was really hard. I hardly ever wanted to go out. I was so embarrassed to go out in my wheelchair as I siding want to bump into somebody I knew before my injury. I hated going to weddings and family events as I knew I would be getting all the attention and be treated like a baby. I Don’t know I just felt strange. I lost all my friends all my confidence. Only two of my best friends stayed by my side throughout everything. It was very hard to accept what happened.
Where I am now
I have come a long long way since 2016. I finished school and college. Ive completed all of my GCSES and A levels. As well as my education I am doing exceptionally well with my physio. I can stand on my own now. I am even doing exercises on the vibration plate. I am doing those things that my doctors thought I would be doing again impossible. I am even saving up my money to go to Disneyland Florida for 2 weeks. Since I have finished college now I am at home a lot but I try to be as independent as possible. I arranged for my own carers for 3 days a week so that I can go out and about without my parents. See more independence which I love. Now ive started this blog!
My mission is not just sharing my journey towards independence, but its also raising awareness for spinal cord injury but also to give others as much information as possiblle for the disabled community. so that you can live life to the absolute fullest.
