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.
