A Question i was asked Yesterday

Yesterday a student asked me a question, he asked me: Dose having FA make it sociably difficult? 

 

It bugged me, and all last night it kept going around in my head over and over again. Now the question did not bug me, it was a very good question. What bugged me was my response; I gave the old cliché number.

I replied with: yes it makes it very difficult, especially now with being a wheelchair user because people just see the chair and not me.

I wasn’t lying there with my reply, that dose happen. 

I’d to go in depth with it more, or at least try. 

Here goes

I have never been what you would call a social butterfly; I’ve always been a bit of a loner and kept myself to myself. Then I was diagnosed with Friedreich's Ataxia at 15, and this really should have been the time when was out chasing girls, and getting ready to go to parties and meet new people and try new things, do all the things a so called Normal teenager would do. (I guess you could say, that I missed out on some important parts of growing up)

Let’s face it I was far from Normal, and being diagnosed with Friedreich's had sucked out, whatever little self confidence I had. 

I use to really hate going outside because of the way I walked, and all I would get is people staring at me. I didn’t like it, that’s how I feeling love with the mohawk and piercings because I was like if all people are going to do is stare, then I’ll give them something to stare at. 

(I wish I had some footage of my walking, so I could share it to show you. I think I may have some on an old tape somewhere, I may have to dig it out)

I always knew my walking was bad by the amount of staring and funny looks I use to get when I was out, one day when I was in Sainsbury’s supermarket looking at the magazines, and the store security guard came over to me and asked me if was drunk. I said no I have this illness and walked off, I was out shopping with my mum at the time and I told her and she wanted to knock the security guards head off, my mum was really mad and upset that he would ask such a thing.

And now

On this journey and having time, lots of time to become comfortable and to deal with the terms and condition of having FA.  I went into a wheelchair full time at 19, and still then I was not comfortable with going out much. It wasn’t till about 21/22 till I start going on nights out with friends.

And this is how it all changed for me. One day out of the blue I picked up a copy of Ataxia UK magazine which my mum has been subscribing to since we found out I had FA. And before this day I had never read it I’ve flicked through old mags and had my mum and Nan show me things, but this was the first time I sat down probably and read it for myself.  And it had this guys story in it, I forget his name but I remember reading his story and it just spoke volumes to me, I was like this is how I want to live my life. I wish I could remember his name and meet him as I would shake his hand and thank him for changing my life. I remember it ending with so you have FA but there is life after finding out you have FA. So after that it was big wake up call for me (I guess you could say I’m making up for lost time)

I don’t really get a whole lot of stares anymore, people just see me as a regular disabled guy in a chair i guess, but when I’m out on a night out I turn into a freaking Rock star, usually because I am the only wheelchair guy in there.  And then everybody wants to talk to the wheelchair guy, and of course the 3 most replies I receive are:

1.       Why you in a wheelchair?

2.       You’re such an inspiration

3.       You have a beautiful smile 

Number 1 is always the open line by them, and next comes 2 after I have finished explaining and we’ve had a little chat, and then 3 comes mainly from the ladies, which I like but I have even had some men tell me that, and no they wasn’t all gay. 

People are still going to stare and just see the chair and not me, but that’s out of my control I can’t change that, it’s just the way some people are.

Then only thing that winds me up to the high heavens with being a wheelchair user is, and fellow FA’ers and wheelchair user will understand. 

And that’s how much planning, goes into doing anything.

I am a wheelchair guy, and I am a master planner. 

For example 

Say a friend of mine rings me up on a Thursday and says, dude a bunch of us are going to a gig tomorrow do you want to come? And I have to say no, because a day notice is to short, I at least need a week to do all the planning. (By the way, I’m not making this up I’ve had to turn down many occasions)

So yeah you need time to research the place/venue you’re going to, to see whether or not they have disabled access and facilities. And then there’s how you’re going to get there and back, I even have some friends who drive and then it’s whether or not my wheelchair with fit in their car. In the past I have even turned down going round to friend’s houses, because I’ve been like well am I going to be able to fit through the front door? (Like I’m some kind of the incredible blob)

I hate feeling like the disabled pain in the arse, so yeah sometimes it's just easier to turn something down.

 

Along the way on my journey, I fell in love with Rock N Roll and Metal music, probably because of how I was feeling at the time, but to me it felt like home.  I found a place where I belong, the music really helped me out as I didn’t speak to people about how I was feeling, so if I was feeling angry I would  put on some Slipknot or something heavy and it would just help. Now I do as many gigs and festivals as I can. (And man, have they been a learning curve. Check some of my other posts for the crazy stories)

To wrap things up no it isn’t easy but then no one ever said it was going to.  It takes countless hours of planning to do things when you’re a wheelchair user, but I think it makes it all that more worthwhile because we have gone that little extra mile. 

And as you know I am a firm believer in: When There Is A Will, There Is A Way. 

You just got to find that Will.