Living in a Body of Open Wounds with Less than Half His Skin (Epidermolysis Bullosa)

Living in a Body of Open Wounds with Less than Half His Skin (Epidermolysis Bullosa)


this next question is gonna be a bit
deep and philosophical, but we’re friends why not
do you believe life has a purpose and if so what is the purpose of your life meet
someone and you say that like I’ve helped them you know sometimes it’s like
hard to think like how would I help you but after 16 years of like meeting so
many people saying you know like you’re an amazing person and stuff like that
maybe I’ve started to believe them and maybe I’d you do something right so this
is the payment of helping other people welcome to SBS K join me as I travel
around the world an interview an individual is living with a condition to
prove no matter how you communicate or what obstacles you face you’re always
deserving of love and acceptance so without hesitation let’s meet today’s
friend do you look at the things you do for your son as a sacrifice absolutely
not I I don’t see it as a sacrifice it’s it
is what have you ever lost hope I mean I may
have sounded like it but I know I know I’ve never truly lost hope how do you
hold on to it um my family it has brought a lot of joy into my life
despite the pain I see every day all over my body my shins my thighs my back
my arms everything my feet never anyone asked me about this I go back to the day
he was born and the the instant he was born he came out the doctor and I were
there and his no first your hand your left hand you yeah your left hand it
appeared as if somebody had taken a surgical glove and it rolled it up to
the tip of his fingers and I saw it when it came out and I looked at the doctor
and I saw the panic in his eyes it was very limited in mobility
I can’t I can barely get from my couch to you know just from my living room to
the kitchen or from my bed to the bathroom there’s like a struggle just to
get out of bed before anything could happen they had the nurses had taken him
out and they started rubbing him down and his left foot they had rubbed the
skin off his left foot and now there was there was blood everywhere and the
doctor goes into panic mode we’re screaming stop I can’t use my
hands that well so I have trouble with doors and the Holding remotes you know
my phone cups so really anything you could think
of drinking eating opening a door going up the steps getting in and out of bed
so it pretty much limits everything that you can try to do when your dad said he
doesn’t look at the things he does for you as a sacrifice why did that elicit
such an emotional response in you I can’t imagine seeing someone you loves
as much be in pain and having to sacrifice so much why do you love
superheroes just because something happened doesn’t mean you just doesn’t
mean you can’t do it just means it’s all right so they you know they always right you have a choice I think you can you
can choose to live miserably you can choose to live with a smile so I think
that’s what our choice has been he literally can’t do anything about it
then make the best of it exactly what’s it like to have John as a brother no
it’s a lightning and it forces you to be humble and open-minded to say the least
I guess it’s fun and I like I wouldn’t trade it for the world maybe sometimes
then I get you back yeah yeah these are going to be the hard-hitting questions
the important ones do you believe in aliens
I believe there’s other things out there you do you believe they’re intelligent
do you think they’re flying above us and UFOs watching us no but I think there’s
other intellectual life out there I guess
in some way I don’t know they’re aliens like in the movie but I believe there is
something out there somewhere what’s your favorite thing about John he’s very good at breaking the ice like
he’ll come in with funny comments and you’re least expecting it and he’s very
good at that he’s very good at making you laugh when you don’t think you’re in
the position to laugh you don’t want to yeah he is imaginative creative loving
caring he’s truly first someone who has a very serious situation he doesn’t take
it very he’s good at not taking life so seriously he’s good at staying humble
and being kind and patient and he thinks a lot about others by his family so
important to you because I mean a family and my friends I know that no matter
what I go through or what happens that we’re all like whatever he goes on
they’re always going to be there I know what I would do for my parents and I
know how I would feel if they were ever like this and then I think about how I
would feel I have to do what they do for me do you
like music yeah do you have a song that you think
represents you hmm oh under pressure by Queen why does that
represent you I don’t know I feel like it’s a song about like empowerment and
no matter like what’s going on in the world you can always overcome it what’s
the most valuable thing somebody can offer you friendship well you know
passion something that uh something that will even impact when somebody meets you
and sees you for the first time what do you hope they think nothing I don’t want
them to have any expectations yet I want them to wait until they meet me and then
you know decide what they think it seems to me like above all else you value
realness yeah why is that I don’t know
cuz at the end of the day it’s really that’s that’s what you know what’s
something simple other people can do that would improve your quality of life if you inspire other people and they
inspire other people and it just keeps going on so that it just helps everybody
you have any regrets in your life yeah why not because if if every single
choice I made likely to this then I did the right thing why are you so content
with where you are do you mean literally on this couch yeah why not are you in
the moment all the time yeah why not I I’m shooting a video for youtube
what is your biggest hope for John’s future
um my biggest hope is a cure Phoebe that he’s independent and happy and not in
pain and also its internal you know yeah sorry I I have to be careful with sharp
and like big pieces of food when I was younger I was that I just remember I
remember it’s vaguely but I have like the potato chip or something didn’t chew
it well enough and it just sliced like cut the inside of my throat which
started bleeding throw it up and coughing up blood for an hour it’s
really difficult to get out of the house so I don’t usually get to see a lot of
people except for my nurses you see there the bandages on him but what you
don’t see is that probably at this point maybe 50 to 70 percent of his body has
no skin on it and I think it’s a little misleading to a lot of people that you
know they see him and they see his face and if he says oh he looks great while
the rest of his body is is falling apart what is the thing you see John struggle
with the most I guess being independent I want to get
a job what’s your dream job 16 you’re at the age where a lot of your peers are
learning to drive and they’re exploring the city what does that like for you um
it’s different I guess I’ve learned that I’ve come to the point where like I
accept that you know things are gonna go a little bit slower it’s in the
beginning of my life then I’d like to I might learn some driver car later in
life than wanting most normal kids and I think I’ve accepted that at this point
but I I believe that things are gonna get better so I’ll just wait till then
and then I’ll make up for it I noticed how you always focus on the good is that
something you actively work on doing or is that just who you are
yeah I definitely you know every once in a while
slip and then I you know I just try to always stay as positive as possible and
look at what I have him instead of what I don’t have every day anybody asked me
about him I said Oh am i Howie I don’t know how he does it I don’t know
how he gets up and smiles and laughs and we joke all the time singing but it’s
also provided I think the opportunity to meet people that have such incredible
souls and heart that you you see the the beautiful side of humanity humanity I
just hope that when I am gone I guess that I left some type of impact on you
know my family and my friends and the people that I’ve known yes III would say
definitely life definitely has purpose um and I believe there’s no right answer
I believe every others different so I’d say if if my life has a reason mmm it is
to help inspire other people to you know get through difficult times

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