Sister – Nosheen ’s story
My sister is the youngest out of four siblings – and when she was small, our mother noticed that her motor development was a lot more delayed. She was able to stand up and eventually walk, but started deteriorating from the age of four or five onwards. She had a muscle biopsy that confirmed the condition. It was hard for all of us to take on that this was the condition she had.
Over time, we had to adapt our lifestyle around her. It takes time, for example, to prepare to get her wheelchair in the car and pack everything we need in. We have to make sure everything is arranged and organised, to avoid too much chaos.
We always feel as though we have to be around her, since she has got such a delicate voice. Sometimes, I can’t hear her saying anything, or hear when she is calling out for someone. However, we try not to tell her what to do, and allow her to do things herself.
As a family member I want to make it easier for her, but she has her own way of doing things. It is just going to take longer, so let it be.
And when she does get into a little difficulty, we joke and she says something like “Oh crap, I’m a bit stuck”, then I will help her out.
While I try not to overstep her own boundaries and her own privacy, it has happened by accident. Once, she was on her phone struggling to put something across. I told her what to put down and, when she didn’t do it, I took the phone off her without thinking and did it myself. I was taking away her autonomy, and it was not fair on her.
Avoid holding someone back
Nosheen: I did not want my sister to feel as though because she has this condition, we have to tailor her life to the way we should want her to do it. Asking her what she wants, opens up my mind to a different perspective. She is her own person and I’d like her personality to flourish a lot more, rather than holding her back. It’s helps to discuss openly with them – “what things do you want me to assist you with and what things don’t you want me to assist you with?”