I read an article recently about how to behave around a wheelchair user and it did get me thinking about what the outdoors experience is like for someone in a wheelchair. Someone like me. I haven't always been in a wheelchair and I get a lot of people saying things like "since when did you need a wheelchair?" or "I didn't know you were that bad..." and sometimes I just feel so angry because it wasn't my choice to end up this way. I don't feel sorry for myself by any means, but sometimes people can say things that are actually really offensive without realising.
I didn't wake up one morning and think to myself "You know what, I feel like being confined to a wheelchair most of the day and stuck on oxygen."
I didn't want this.
I don't actually enjoy it.
It is just as it is. My wheelchair is my independence. Without it, I am not able to do things and yes that does kind of annoy me because I never used to need one, but it turns out, it was probably already pre-determined somewhere along the lines. I have always had trouble walking and can't run at all, never have been able to due to a mild case of Hereditary Spastic Paraplegia (or HPS) which I inherited from my father's side of the family (along with my "Squint" (that weird eye thing), stomach problems and a few other things). Basically this means my legs don't work as they should and as a result, my back (not helped by a curve or a serious injury during childhood, the joys of being the younger sister of 2 older brothers who loved wrestling, well we all watched it but they loved to do the moves on me as I was a lot smaller than them and easier to chuck about) I have problems walking, standing or even sitting unsupported. When I have bad days, my legs shake so much that I have to use a grab rail to transfer to the shower. Its not fun and there were frustrating times too. The problem with school is that unless you're sporty, you aren't really respected, so get someone like me in to the mix, it wasn't a whole barrel of laughs.
I remember the teachers telling my mum that I was just trying to get out of PE and running and my mum turning around and saying "No, its not that she doesn't want to. She can't. She never could." My mum stuck up for me a lot because she knew what I was dealing with and she did do her best to make sure that I at least stayed out of a chair in my childhood, even when after my back injury (which happened when I was 10) she was told that we would only know the true after effect of it as I got older and whether my dad's decision to withhold medical help at the time (not to mention moving me, which you NEVER do with someone who has hurt their back, EVER.) would have drastic consequences for me. When my mum told me about how for 6 months she effectively had to watch me learn to "walk" again and how I always limped afterwards, I felt for her because that must have really been hard for her to see and how powerless she was against my dad.
I just accept it because that's what I have to do. If it means that I am able to keep on living for as long as I can then I will carry on doing what I have to. It's not been easy and in some ways it felt like another blow and loss to my independence to have to use a scooter, then a wheelchair but at the same time it reminded me that going out and living and enjoying life didn't need to be painful or exhausting. In some ways its like I have been allowed to live my own life once again and for that I am thankful. Its hard to be stuck indoors with an illness and not be able to get anywhere or do anything. It made me miserable because I felt trapped in a kind of prison, I wanted to do things. But I couldn't. I wanted to be free but I was in a body that was slowly unable to keep up and I think it took me a long time to adapt to things. There are days when I do struggle with the implications of being in a chair, but I have people on my side to offer help, support and love. I think that is how I managed to get through the adjustment of moving from my flat to a bungalow (which turns out was the best thing ever for me).
I had to learn that people are always going to have negative comments towards you. I will never forget the time I got on a bus on my old scooter and this woman shoved past me saying "I'm 84 and I don't need one of those." Or when Becky took on a kid who was gawping at me (much to the support of everyone else in the shop at the time, including said kid's own mother). Or even the hassle it takes for me to even get on a bus if the driver is too lazy to put the ramp down, this happens pretty much every time I try and go out which is partly why I don't go out much. I do try and have a sense of humour about things, even if they bother me. For instance, when I was at an appointment, a small child blurted out "Mummy, whats that on that lady's face?" and I smiled and joked that it stopped my bogeys from falling out. Children aren't intentionally malicious, they just don't always understand.
I always say to people, look at me. Don't judge me for what I can't do but for the person I am.
2 years ago