Katie’s story: Life as a young person with spinal cord injury

Katie’s story: Life as a young person with spinal cord injury

Research found that adults with spinal cord injury who were injured in childhood are less likely to live independently. However, with the right support, young people can live happy and fulfilling lives. Here, Katie, one of Back Up’s youth advisors, answers to a few questions about challenges she faces and how Back Up has helped her to adapt to life with spinal cord injury. 


As a young person living with spinal cord injury, can you explain what independence means to you? 

It means doing things on my own like anyone else my age would do and showing that I’m not incapable because I’m in a wheelchair.

What is the biggest challenge you face in order to be fully independent?

I experience a lot of pain and fatigue. I struggle sometimes to get around on my own and I need someone to push my wheelchair, carry my things or drive me places. I also experience anxiety – a lot of the time I’m too anxious to do something without someone there or doing it for me.

Do you think your friends (without spinal cord injury) are more independent compared to you?

Yes, I think they are. They tend to travel further afield and do more things than I do. When planning to go away, they seem to be okay to travel alone, whereas for me it takes a lot of planning and help from parents to ensure everything is there.

How has Back Up helped you to rebuild your independence?

Back Up has really helped me to regain independence. On my first Back Up course, I relied on my parents for everything. I didn’t do anything on my own. Within the week, I learned to do more by myself. When I came home my parents were amazed at the change in me. Since then, I have gone on weekend with Back Up, volunteered and stayed in places on my own. Without Back Up, I wouldn’t have done any of that.

What are your plans for the future?

I’m not really sure what my plans are. But I want to work with children or in a setting where I can help other people, as well as continuing to volunteer.


Back Up is the only charity with dedicated services for children and young people with spinal cord injury. You can find out more about our work here

How London to Paris ride helped Siby to rebuild independence

How London to Paris ride helped Siby to rebuild independence

It was 1994 when a motorcycle accident changed Siby’s life overnight. She was young, confident and busy. But the accident left her broken.

Siby was at Stanmore spinal cord injury centre for three months. She said: “My mum spent a lot of time with me, both in hospital and afterwards. She had just retired.”

Just before Christmas, Siby moved back home. But life wasn’t the same. Nine months after the injury, Siby heard about Back Up and decided to go on a water ski course at Heron Lake.

“Apart from having a great time, I realised there was life, fun and adrenaline to be had even as a wheelchair user.”

After the water skiing, Siby went on a Back Up skiing course to Colorado, where she fell in love with the sport. “Skiing definitely boosted my confidence,” she said. “I had to get myself together quickly for my kids and Back Up did me the world of good.”

Recently, Siby decided to give back to Back Up by taking on a London to Paris cycle ride challenge. “The London to Paris came at a great time,” she said. “I needed something new to do and it gave me the kick in the bum to exercise.”

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She said the best moment of London to Paris cycle challenge was experiencing the beautiful countryside, and realising she had completed it when arriving at the Eiffel Tower.

For Siby, the London to Paris cycle challenge was more than just a fun event. It also helped her to improve her independence by meeting new people and doing something outside her comfort zone.

“It’s a total confidence booster and shows there is life after spinal cord injury and being in a wheelchair is not the end.”

Siby would encourage other people like her to take on the challenge for Back Up, saying that the staff and people taking part are “fabulous”.

If you want to take on a challenge like Siby then why not join our Parallel London team this year?

Will Clark: Being independent with high level injury

Will Clark: Being independent with high level injury

This month of our 30th anniversary year, we are talking about independence and what it means for people with spinal cord injury. Here, Will Clark, who has been living with spinal cord injury since 2012, writes about the impact of the accident on his independence. 


 

Four years ago, I was left permanently paralysed during a charity cycle ride. I was 27. I grew up in the Lake District and loved being active. I was driven and incredibly competitive. I enjoyed university in Sheffield and had lived in the Alps, travelled Asia, worked in New Zealand and sold ski holidays in London.

It was a great week leading up to my accident: a strong finish in a race and promotion to Hotel Manager where I was working. It was also the first year anniversary with my girlfriend, I had two days in Edinburgh booked and had future plans.

The swim went well but during the cycle it was noticeable there was a lot of debris on the road. I jumped the first stick and landed on the second. Before I knew it, I was in mid air looking at the concrete thinking, that looks hard. My helmet took much of the impact. My local GP, who was supporting the event was there within minutes. He had over 30 years experience but was white as a sheet. I knew it was serious. Welcome to the world of spinal injury…

I was airlifted to Newcastle then transferred to Middlesbrough for almost 6 months of rehabilitation. Adjusting to life at home was tough and an anti-climax. 

In the early days following my accident, support from my family made a massive difference. I wanted to know what was still possible. Spinal cord injury was unknown for my family and the nurses just told me that things would be different. Around this time, my mum found information regarding Back Up and its mentoring service.

My mum asked for someone who would have a positive impact on my life – they put me in touch with Andy. He was honest and got me thinking about doing things differently.

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Will Clark in Paris

While I was in high dependency and still ventilated, Andy was leading a course in Cumbria. He rang me from the top of Latrigg. It was great to hear that he was on top of one the fells I used to run up. I was up there before the year end.

I was fortunate to move into a newly built adapted flat. Friends and the local community helped me to raise money for equipment that would have been otherwise unaffordable.

The team around me are all local and live out. I call them my team rather than carers, as they are all a similar age with similar interests to me.They do what needs doing and then I can get on with my day.

I would rather not have to rely on them but they make things possible.

I massively miss my old life but in this new life, I have raised £12,500 for the Air Ambulance charity and completed the Great North Run. I talked in schools about spinal cord injury and have mentored someone in a similar situation. I met some friends through Back Up, I helped in my local primary school and I’ve also started looking at local accessibility with the National Trust.

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Will Clark sailing

 

As a regular Calvert Trust volunteer, I met Prince Charles. I also featured in national press playing Fifa on the PS3 with my chin and shoulders. I am working on accessible Lakes map. I have also recited poetry on the One Show.

People keep telling me that I’m inspirational and I just ask them: “What would you do in my position?” It hasn’t been easy and there are challenges on a daily basis. The key to everything is to keep busy and keep pushing myself forward. 

People say it’s still early days for me but I wouldn’t be human if I didn’t want everything now. So what next? A tandem paraglide and Back Up’s Belfast City Skills course.

In the future, I would love to lead a Back Up course and become a power wheelchair trainer. Things are gaining momentum. So watch this space!

Inspired by Will’s story? Do you want to rebuild your confidence and independence? Join us on a Back Up course