Transitions (change) - Ataxia UK

Transitions (change)

Post Published: July 6, 2021

Beth writes about her attitudes towards others’ perception of disability, and how it affects her life.

It is exceedingly difficult to take on others uncomfortableness with your disability. It takes time to understand ataxia and find a way to keep going. You must not let the thoughts of how others see you, affect you. When you have a disease that is progressive, this means that you constantly must transition from one state to another. Just when I think I have my strategies sorted, I then find I must revaluate things, which I find exhausting. I try and keep myself thinking positively but I tend to let worries build up. It then comes out like a dam bursting and I have the task of rebuilding myself. This is not always unhelpful, as I find I need this breakdown to make big changes and change my thought patterns constructively.

I recently had one of these episodes and thankfully it was with the right person to help me work through what I needed to change. I had been using a crutch to help with my balance, but this was hurting my back and I really did not feel safe when outside my home. I know this is silly but when I walk with the crutch, I must keep going and if someone calls or talks to me, I cannot turn my head and often feel rude. I knew I needed more support, but it took this breakdown to allow my head to move forward. The next day I went to the local mobility center and bought a rotator which is a walking frame on wheels. I called him ‘Reggie’ because I needed him to become part of the family and we all refer to him as ‘Reggie’. I cannot stress enough how liberating this feels, I can now stop and look around when I am walking.  It has really helped to make me feel more confident, although my disability is more visible than when I was using the crutch. Where this has helped me accept my new transition, it has had a more negative affect on others close to me.

I needed to work through this because my instinct was to help and make everything better, but I must accept that this is not within my control. They must work through this situation themselves because you cannot control other people’s perception. You cannot afford to let any negative situations around you affect you. This is not what they want, they love you and mostly they genuinely want to help. I am sure everyone struggling to move forward has experienced that ‘look’ of pity/concern, which you must ignore for you own sanity. This, I think, will never fully go away but what you can control is how you positively react to it.

The lesson I have learnt through this journey is you do need to be slightly selfish and do what’s right for you.

You need to make your life as easy and happy as you can.  People are used to relying on you and now they are finding they cannot. That is their issue to deal with not yours and I need to remember that.

Find success in the small things that make you happy and smile for yourself, not for others!

Beth Winder

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