Living with spinal cord injury
A spinal cord injury can affect your life in so many ways. Activities and routines that used to be straightforward can suddenly seem insurmountable. But we believe with the right knowledge and support, people with a spinal cord injury can still live life to the full.
Here you can read the stories of other people who are living with spinal cord injury talking about their experiences and how they adapted to their new situation.
Jackie had a spinal stroke in 2012. As she had an incomplete injury and was still able to walk, she was discharged from her local hospital and never had the opportunity to go to a spinal centre. The lack of specialist rehabilitation left Jackie without the knowledge, skills and confidence to live independently. Jackie said, ‘I’m one of those people who slipped through the net.’ She wanted to return to work but had to take a leave of absence because she lacked the knowledge to use a wheelchair and walking caused her extreme pain and fatigue. This left her stuck at home and feeling isolated.
Jackie eventually discovered Back Up and since attending our City Skills course, her life has transformed. She can now get out and about in her wheelchair, and she soon hopes to go back to work part time. She has even challenged herself by going to public places like shopping centres that she wouldn’t have contemplated visiting in her wheelchair before.
“The doctors were amazed by the difference in me. The course basically gave me my life back. I was so much more confident in myself afterwards.’’
Having a Personal Assistant (PA)
Beth was just about to sit her A levels when she broke her neck in a car accident and had to readjust to life as a wheelchair user. After completing her rehabilitation and returning home, one of the things she struggled with was the fact that she had to have a Personal Assistant (PA) with her for the majority of the time. She had a team of 4 PAs, working in 24 hour rotations. Beth found this tricky as she was limited to certain changeover times.
‘‘I would sometimes limit what I did to only spending time with friends as I didn’t need a PA with me. I also struggled to find much in common with a couple of my PAs as they were 20 years older than me which made me feel self-consciousness around them.”
Beth went on a Back Up Ski Karting course and soon after became a volunteer. This gave her the chance to meet other people with a spinal cord injury and discuss her situation. She realised that she could change her care team to suit her needs and what she wanted to do. The decision made a huge difference to Beth’s quality of life.
‘‘This change has enhanced my independence as I have more flexibility in my life and I am happier and more comfortable with the people who work with me.’’
Life with an incomplete injury
”It was the end of 2006 and I was living an active life as a snowboard instructor in Switzerland. I went off a jump, something I did all the time, it wasn’t anything out of the ordinary. But something went wrong. I twisted in the air and hyperextended my neck, resulting in C3/C4 spinal cord injury. I spent a week in a hospital in Switzerland and was air lifted to Sheffield spinal injury unit, where I spent 5 months undergoing rehabilitation.
I walked out of hospital. Now, even though I’m up and walking I still face challenges. I am numb, so I can easily damage my body without realising, like cutting my feet. During my time at Sheffield and during the InterSpinal Unit Games, I found out about Back Up. But to me Back Up was all about learning wheelchair skills so I was unsure where I fitted in. It’s great to hear that Back Up do a course specifically for people who can walk to some degree (Next Steps) and they are looking at walking skills alongside their wheelchair skills.
In 2014 I contacted Back Up to see how I could get involved with supporting others. I initially spoke to Justin in the mentoring team about becoming a mentor. It was really useful to chat to Justin. I hadn’t spoken to anyone about the experience of having a spinal cord injury. I have lovely people in my life but they simply do not have the lived experience. To be able to relate and empathise was hugely important. I wanted to replicate that and give back to others.
The biggest challenge of living with spinal cord injury for me is psychological. At 23 I was a snowboard instructor and sports graduate. Sport was my identify. It was how people knew me. Then in an instant my identity changed. Speaking to Justin helped by realising that other people go through similar things. Its therapeutic being a mentor, it is an opportunity for ongoing reflection and connection with other people.
My communication skills have had to develop and adapt. I now work with young people, helping them to progress into education. I didn’t want to play sport for a long time because I didn’t want to be seen as inadequate. Then I played at 5 aside football match with my work colleagues and it was brilliant. People were so supportive. I realised why should I restrict what I do because of my perception of what people may think. I run half marathons and requalified as a snowboard instructor – things that I thought were over for me. There is still loads more to achieve and do!”
You can also visit our blog to read about a wider range of experiences from other people with a spinal cord injury.