To be a kid with spinal cord injury

Posted by Sacha Brech, June 23 2016

She was injured in a car accident at the age of five – today she is 19 and a promising handball player, living her life to the fullest. But it wasn’t always easy to be a child with a spinal cord injury.

This is Julia Johansson’s inspiring story.

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When we meet her she’s doing some serious wheelchair racing in a skate park in the middle of Oslo. Turns and jumps so intense that her wheelchair loses a wheel. Not a big problem though. She goes back to Camp Spinal, where she is a coach, balancing on two wheels, so used to her chair that it feels like an extension of her own body.

  • It’s the best thing with the spinal cord injury, actually. The wheelchair hinders me sometimes of course, but most of the time I have so much fun with it!

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Adventurous child

Julia is an intriguing combination of a little bit shy and quiet, and limitless in terms of speed and adventure. She has made her mother’s heart flutter more than once, being a kid in a wheelchair wanting to do what everyone else did. Julia went in the slide at the playground  in the wheelchair – and went downhill on two wheels. She actually broke her leg once; her leg got stuck when she was going into a swimming pool.

  • But that was okay – I couldn’t feel it anyway, she says with a smirk.

Her active life and athletic ability have saved her many times, both physically and mentally. But a couple of years ago her history started to catch up with her. All the uncomfortable thoughts and feelings began to surface and she started to reflect for the first time.  

  • It just came, for no obvious reason, and I just let it be like that for a while. I let myself feel these feelings, and also got a little help to cope with everything.

The accident

Julia doesn’t remember anything from the accident or the following months. She has been told that she was travelling in the car with her mother and her mother’s two friends, on their way home after Christmas shopping in town. An oncoming car changed lanes and there was a frontal collision.

The two friends died immediately, and Julia and her mother were badly injured in their abdomen, losing a lot of blood. 

The accident was followed by a long period of hospitals and rehabilitation, but the next autumn she began pre-school and things started to get back to normal.

The other kids fought over trying Julia’s wheelchair and she made a schedule for everyone while she moved around with help of her arms. She developed into a very independent young girl, who didn’t want anyone to help her.

  • I really wanted to do everything myself. I was so eager to be independent that I actually wore myself out sometimes.

Julia grew up in a small town in Sweden, in a close knit community. The downside was that the town didn’t offer many activities for a kid with a spinal cord injury. But the upside was that everyone knew her and respected her.

  • I did most things that other kids did. I hung around with friends and slept over at their houses and all that. Thankfully I was surrounded by good people who treated me just as anyone else.

Bladder and bowel

But the hardest part with the spinal cord injury was the bladder and bowel problems.

  • I have always had very high integrity and I didn’t want anyone else to help me wee with the urinary catheter. I think I was seven years old when I started to self-catheterize and that gave me my personal space and freedom back.

She didn’t tell the friends and teachers in school about her bladder and bowel problems, since she had an assistant who could take care of her when accidents happened. Together they managed to avoid embarrassing moments and she didn’t tell anyone until she was 13 years old.

  • I will never get rid of the bladder and bowel problems completely but it is as good as it can get right now. There are good and bad days. If I think about what I eat and take care of my stomach it works fine, but sometimes I just need to enjoy life a little bit, even if I risk a bad day, bowel wise.

Julia always needs to plan ahead when she is about to go somewhere.  And sometimes she even needs to skip fun things.

  • I like music but I really need to check everything before I go to a concert or a music festival. Are there toilets for disabled? Can I get around? And camping is not my thing…

And now...

Today Julia is in high school, specializing in handball, and she lives in a flat together with her cousin. As well as playing for the national team in handball, she will take on her life’s biggest sports challenge; Toughest race, an obstacle course similar to Ninja Warriors. She is sponsored to participate as the first person in a wheelchair (picture from last year's race).

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  • It suits me fine – I will need strength training and find out how I can get over the obstacles in my own way. It will be a nice challenge!

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Topics: Lifestyle, Recovery, Children, Spinal Cord Injury, ISC, Self-catheterisation