FA and the constant of change

In my last talk I done, I got asked 2 questions 1. How does having FA change your daily routine and how do you do things different to normal people and 2. How has it affected your social life?

I’ll get to question 2 later, let me just say I gave the short version answers because I was I had a time I had to stick too, but this my blog so I can go into it with more detail. 

Since 15 when I was diagnosed with FA (Friedreich's Ataxia) the hardest thing to come to terms with is the constant of change, I mean I remember a time where I walked to the toilet like a normal person pulled my pants down done my business and walked away. Yeah okay it was a long time ago and yeah I miss those days but only because it was easier and a lot quicker. 

I am 27 now and a lot has changed most of all is time; everything just takes a lot longer now a days.

Here are some examples of change I gave them

When I wake up I have to use a transfer bored to help me get out of bed.

A few years back my transfers were redeemed as the evel knievel of transfers by OT I use to just jump and hope for the best, most times it work but 9 out 10 I’d miss my target.

More change but that one is more change to benefit me, and now I’ve had my feet done I have more control over my transfers. 

Shower chairs, pee bottles, losing the ability to walk, my speech getting worse.

Right time to share a story

We are in the year 2015 you would like most places would have disabled toilets you would think so but a lot them don’t so I invested in a pee bottle (and because I can no longer pull up my own trousers when I am in m wheelchair more change) I only use it when I’m out and last summer my friends Deb and Rob came down to say with me for a few days, and we ended up in my local wetherspoons pub getting drunk. We all know what happens when you drink you go to toilet and you pee a lot, so anyway I’ve gone off to the toilet and yeah I was some time doing my business I had a lot of pee to come out so we had this couple on the table in front of us and they kept turning to my friends and saying oh you friend has been awhile is he okay? Turns out the old man was disabled and he needed the toilet (to be fair tho if we were on the x factor of disabled I’d win that shit hands down) I think he was a bit of a faker, anyway what he did was not cool he came and opened the door luckily I had finished but my Johnson was still out and he stood there with the door open and went how long are you going to be? Man I felt like slapping him and going fuck where’s the law saying how much time you have pee to in... He was a dick.

To sum it all up I do everything differently to normal people, but you know what I wouldn’t change it because without it I wouldn’t be the person I am today.

2. How has it affected your social life?  

I have covered this before; people who read my blog or follow me on facebook/twitter see I do a lot of gigs, a few nights out, festivals wheelchair rugby and even my talks for Bournemouth University.

All this has come with time 

I have never what you would call a social butterfly I had a few friends at school and when the FA bomb was dropped on me I pretended like nothing was going on I was in denial.  A couple of them knew but not many and then the last day of school comes and you and your friends part ways they are of making plans for future and your stay here thinking fuck by time I’m 18 I’m going be in a wheelchair. So you in role yourself in some collage computers classes because OT’s and mum say you need to do something also  because you gave on school and left with rubbish GCSE’s. You do all this without making any friends because you have no self confidence and you think everybody thinks you’re a weirdo. And then 18 to 21 comes and what friends you have left are done the town drinking  and your sat in your wheelchair in your room playing Xbox because your still not ready to face the world.  I use to spend a lot of time looking at other people and i would think If I could be like that,
I would give anything
Just to live one day, in those shoes
If I could be like that,
what would I do,
What would I do

I just wanted to be anyone but me (that’s a thing of the past now as I just want to be me, this is who I am I’m Justin Scrimaglia and I have Friedreich's Ataxia)

I use to be a bit of a master back then of putting on a brave happy fake face, but on the inside it was my own personal hell which is probably way 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.  My very first gig I went to was Motorhead, super heavy and a great night.

It wasn’t till I was 21/24 that I became really comfortable with FA. And now I can talk open and freely to anybody it, how this happened was 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 and I started reading more of Ataxia UK and I started reading about people with FA training to become doctors and things and it’s was like ‘wow some hope’.

After I had my life changing experience I decided to get a tattoo to complete the journey. I have a left sleeve tattoo which is a phoenix starting  at the top of  my arm and then going down my arm and joining the words ‘Family’ which I have inked on the inside of my forearm, I also have 5 cherry blossoms. It’s a Japanese style sleeve so it’s big, bright and very colourful. It was done by the amazing Emma Garrard right here in Bournemouth, she is a very talented tattoo artist. So the reason behind my tattoo of a phoenix is that it signifies my new life by arising from the ashes of its predecessor, so I got a phoenix to represent my old life ending and my new life just beginning. The words Family and the 5 cherry blossoms, are there for my Family who have stood by me throughout all my ups and downs in life.

Now a day I just  don’t worry what other people think of me, if they like me then great if they  don’t oh well their lose and plus when I’m on a night I turn into a rock star because I am usually the only wheelchair person out and most people want to talk to the guy in the wheelchair.

If I can give a little bit of advice to a person recently diagnosed with FA just hang in there it takes time there is no set time to how long it with take as long as you need as long as you have some will to fight that’s why I am a big believer in where there is a will, there is a way.