Living with Muscular Dystrophy: Blake’s World

Living with Muscular Dystrophy: Blake’s World


♪[hypnotic piano music]♪ It’s, I don’t know really how
I explain this really, it’s “in a wheelchair.” People
don’t usually ask any further than that, so… ♪[hypnotic piano music]♪ Spine muscle atrophy Type II
is what I have, and it means your muscles don’t develop,
so it’s a genetic disorder. That means I have the same muscles as when
I was born, and that’s pretty much it. ♪[hypnotic piano music]♪ I have to have other people
doing stuff for me. I mean, I’m sure it would be easier if I was
able to just get up, make my own breakfast, and head off to uni,
but it’s just the way it is. It’s my life, and it’s the
only one I got, so… ♪[hypnotic piano music]♪ I’ve never been able to walk.
I used to be able to feed myself. I can’t do that anymore. Now that
my body is getting weaker and I’m able to do less, I’ve had to
just place trust in people’s hands and hope for the best. ♪[singing and piano chords]♪ I started writing my first lyrics
when I was in about third grade. Music is universal and the
sound is the chaos of the world in a beautiful, obvious way. The
stuff I’m saying to you now is a stream of random thoughts,
chaos. When you put it in lyrics, you organize that chaos. ♪[singing and piano chords]♪ I think it takes a lot more to be
my friend than it would take to be anybody else’s. So if somebody’s
my friend, then I already have a great amount of respect for
them, purely because they’re patient enough to put up with me and
put up with my extended level of needs. ♪[singing and piano chords]♪ [inaudible] that last one.
♪I will catch you when you fall.♪ Do it like, ♪catch you when you fall?♪ I thought, keep the same…
♪I will catch you when you fall.♪ ♪[piano chords]♪ I think I’m at a much deeper connection
with some of my friends than I would have ever been if I was
able to walk or I was able to be, for lack of a better word, normal. Like a brother. Hey. That’s the way we are.
That’s how we roll. How we roll. And as I said before, the lyrics
are amazing. Like if you read some of these, the end
of the chorus is like, “my life’s not” “a fable, my heart’s on the table,
but there is no beauty for this space.” ♪[piano chords and singing]♪ ♪ you gave me power to return,
it’s so real, I’ve come back to you, ♪ ♪ …. I’ve come back from Hell’s gates
to my rightful place, ah… ♪ ♪ and I’m home, so forgive me
for leaving your side…. ♪ ♪ you are my pride,
my one and only ♪ This idea of having a girlfriend
has always been a high priority of mine. But more recently I’ve
taken a bit of a tougher look at it, I guess, because for a long time
I didn’t really care how I got there. I just wanted a girlfriend. That was it.
I’ve asked a girl out. I’m going to say, “if we do have something to eat,
you’re going to have to help me.” “Is that something you’re okay with?”
If not, the date’s not going to happen. It’s that simple,
because I need a girl that will be willing to help me. ♪[piano chords and singing]♪ ♪ so embrace my broken body…♪ ♪feel my tears, my weary soul,
I was cold until you …♪ ♪ and now you fall into my arms ♪ My older brother Ryan, he has the
same disability as me, which means that he had to succumb to a
wheelchair at an early age. He’s one of the strongest
people I know, if not the strongest person I know. My mom, Julie,
she’s an incredible woman, and this is stuff that I’ll never say to
her face of course, but she is an incredibly amazing woman
who’s done a gigantic amount more than she should have to.
Kendall’s probably the most like me in the family. She just seems to
enjoy everything that she can. Then there’s Melissa, who, she’s
a very independent young woman, and then there’s the clown
of the family, Reese. He is nuts. And then there’s me, and
I love me. I’m incredible. I guess it’s been efficient having
a person who’s had similar experiences, or sometimes even
the same experiences. ♪[hypnotic music]♪ Pretty much, I just try to talk and
he pretends to listen. That’s the majority of our relationship. Are you sure you don’t
want to heat it up? We’re heading off to interview
someone to be my new caregiver, and who’s going to
look after me for the year. -Not in my face.
-Sorry. [inaudible] -[inaudible]
-[inaudible] Every now and then I’ll want to
do something which I’m not able to do, but I don’t bother spending
too much time thinking about it. I mean, if I’m always wanting something
more that I’m never going to have, then I’m just setting myself up
for disappointment. Do you want me to hold you? No, just push. Ah, this is my assistant.
Good to finally meet you. Yeah, same. So, you’ve had experience
doing this before? Yes. I worked for six months
at the [inaudible] …paralyzed from
the neck down. Oh, okay. So you’re
good with feeding, yep? Obviously this is an extremely
important job for me, because the person who’s looking after me has to
take care of me and essentially make sure I stay alive, because
everybody else in my family is out for the majority of the day, whether
they’re at work or at university, so he’s got to be there
the entire time. Seems to be on to it, and he’s had experience in this
kind of thing before, so it looks really good. I found myself a new caregiver. [laughter] Awesome. [A few days later] So the green one is mine, yeah.
Put toothpaste on. [inaudible] And also put a
little bit of water on. -Hot or cold?
-Cold, just a tiny bit. Alright. It’s best to start with just the
top teeth, because I’ve got a massive overbite, so just… Just top front teeth? Being dependent on others for
practically everything can be negative, but it’s brought me a lot of
good people, a lot of good friends. I am independent in
the ways that matter to me. The outside of the teeth [inaudible]. [inaudible] to my lips as well. Thank you. ♪[hypnotic music]♪ If I ever want to go out, either I
have to book a taxi or I have to hope that somebody who’s
with me can drive the van. ♪[hypnotic music]♪ I am independent in the ways
that matter to me. I do a lot of writing, and that’s where I can be me
at my most. I mean, I’ve written an article on freedom before. I think
the closest thing to freedom you have is your decisions that you make.
So the idea of a personal space in anybody’s life is pretty much
irrelevant. The closest thing you can have to a personal space
is inside your head. ♪[hypnotic music]♪ So firstly, what the hell is a
disability? Disability, as defined by dictionary.com, is a lack of
adequate power, strength, or physical or mental ability. That definition
is utter crap. I attend university, I maintain a relatively good
social life, I maintain a religious life, and I’m able to use the talents
that I have. So there’s a lot of things that I’m now able to do that
really don’t fit with that definition. I write lyrics. I have, I’m going to
kind of spam myself here. I have a Youtube channel
where a friend of mine sings and does the piano and guitar,
but because of my disability, I’m restricted in that I can only
write the lyrics and music. I’m not able to do the singing. I’m
not able to play the instruments. I would sing for you guys now but
it would probably make your ears bleed. I’m a big fan of professional
wrestling, which admittedly is quite sad, I do realize. But, although
I love professional wrestling, my disability restricts me from
ever becoming a professional wrestler. ♪[hypnotic bell music]♪ To society in general, I think
it’s a bit of a shock that people like my brother and myself are
starting to move forward and show that we do have something to
contribute. For people who know us, it’s no surprise that we’ve been
able to accomplish so much. ♪[hypnotic bell music]♪ [inaudible] WrestleMania, the
grandest stage of them all. WWE champion, United States
champion, and he is going to destroy you. I made
the character based on myself, so it’s pretty much just
who I am, or who I’ve tried to be. ♪[dramatic music]♪ He’s kind of based on the fact
that I would like to be a bit of a nicer person, do my best to
help out people, but then when push comes to shove, I’d like
to kick somebody’s butt. Kapow. And you’re done. ♪ so embrace my broken body ♪ ♪ feel my tears, my weary soul,
I was cold until you ♪ ♪ and now you fall into my arms,
I won’t let go, now I’m home ♪ ♪ and I won’t leave,
I’m where I belong ♪ ♪ I can’t make up for the time
we lost, so I’ll write you ♪ ♪ how I feel in your song.
I am here, and it’s so real ♪ ♪ my heart began to heal,
now I’m here and it’s so real ♪ ♪ my heart began to heal
mmm…. ♪ When I was 15, I believe it was,
I was just lying in bed one night, listening to music, and I
suddenly realized that despite having friends at school, and despite
having a good family around me that loved me, and one that I
loved in return, there was still something missing. ♪[hypnotic bell music]♪ I kind of just closed my eyes
and I said, “God, if you are out there,” “if you are listening, I’ll give
this church thing a go.” In return, I want a social life. I want a life.
Being at that church was the first time in my life that I felt
that being me was okay. [Preacher] And it doesn’t matter what
problems we have, because we can overcome them through
the atonement of Jesus Christ, because he loves us that much. ♪[hypnotic bell music]♪ Every now and then I’ll just
close my eyes and say, “God,” “why did you do this? I hate you.
You suck at this. If you loved me,” “you shouldn’t have done this.
Blah blah blah.” Just have a hissy fit in my head, essentially.
But he’s God, of course he can deal with it, and of course he can
see why I’m doing it. Everybody has a time when things just seem
too hard in their lives. There’s nobody on earth who doesn’t
complain about something, even if it’s only in their heads. By having that clearer
perspective on life that he offers, when I’m at my
worst and most vulnerable, that just makes me a lot happier
with who I am when I am happy. ♪[hypnotic bell music]♪ -Abuse.
-What? -Shut up.
-What? -Shut up.
[inaudible] you can’t have everything… [laughter] I was meant to die at 2 years old,
so as far as I’m concerned, I could die tomorrow. I don’t think
I will. I think I’ve got quite a while left. But the fact is I’ve exceeded
my expiration date by so damn far. ♪[hypnotic bell music]♪ There’s times when you think
about what’s going to happen, but even if it’s bad you
got to take it one day at a time, and what will happen will happen. [inaudible] get quite sick sometimes. And they’re in hospital. It’s quite
hard to get through that, and that is just a scary time for us. We all sort of pull together
as a family and, I don’t know, just always works out in the end. ♪[hypnotic bell music]♪ Of course I would love to stay
on earth for quite a while more and continue to learn, discover,
and do new things, but if I did die tomorrow, I would be
fine with that, because I’m just not scared about death. ♪[hypnotic bell music]♪ ♪[piano chords and singing]♪ I’ve become a lot more comfortable
with who I am and what I’ve done in my life. ♪ I won’t let go… it’s your song… ♪