It’s not easy to live with, but I remember no different. Nearly everything I do is effort and time consuming.
When I began to struggle with my walking, about age 10, I figured that walking was that difficult for everyone and that I needed to concentrate more to be able to do it like others. Then I remember questioning my ability to be “normal”. I couldn’t grasp the fact that everybody else could make it look so effortless, while I found it so draining and tedious. I have memories of watching people walk and feeling baffled.
However, I had the best childhood, for the most part. My nan lived in a large bungalow with nearly 5 acres of land. In the garden there was a huge vegetable patch, with every veg you could think of. Round the corner from that would be trees and bushes with fruit and berries on. There was also two long green houses full of tomato and cucumber plants. Along with two garages, one smaller and the other big. A caravan, a wendy house and two polytunnel greenhouses. The front sections of the garden were where my nan had all her beautiful flowers, pond, waterfall, bridge and garden ornaments. Towards the back of the garden were eight stables, four fields and a sand school. I also had a little portion of the garden to myself, where my step-granddad built me a little play house with a garden, fence and everything! My mum and I lived there for a few years, on and off. When we didn’t live there, we were still always round. Mostly, I was with the horses or playing by myself in my play house. I would play in the hay/straw barn or run up and down the manure heap, hygiene isn’t top of a kids agenda. My walking was ever so slightly affected, my balance was off, but apart from that, I was a typical tom boy. I believe that being so outdoorsy kept my symptoms at bay, we will never know, but I think it is true.
I don’t remember what it feels like to walk normally anymore. I was active, loved being outside and always playing. I had a good life without Ataxia. My life is good now too, just in a very different way. I crave independence, maybe because I know that I can’t have it. I crave spontaneity, maybe because I know I have to plan. I crave having a career, maybe because I know I can’t do the things I want to. I have no similarities with that little girl I once was. My love of horses will never change. But the rest of those things are just a distant memory now. I am blessed in so many other ways, just not in my physical abilities.