Wednesday, March 16, 2016 // The Statement
7B
My Brother, Joseph
by Katie Penrod, Daily News Editor
T
he moment a baby takes its first steps is such
a beautiful thing: the stumble, the arms reach-
ing out, mom and dad smiling across the room,
the “you can do it” and “just one more step.”
I don’t remember my first steps, but I remember
Joseph’s.
My brother Joseph took his first steps like any
other child. It was probably as normal as you can
imagine. It included all the stumbling and hope and
excitement that first steps normally do.
Little did I know Joseph would only walk for 12
more years.
When he was five, our world turned upside down.
He’d been walking for four and a half.
When he was six, I Googled the words “Duchenne
Muscular Dystrophy” and finally understood the
gravity of what was happening. I felt hopeless.
When he was seven, the limping and slowness
were evident when he couldn’t keep up with his
friends.
Eight, nine and ten: He struggled more and more.
11: He was using his scooter to keep up.
12: He couldn’t stand for more than one minute. He
held on to the bathroom counter when he brushed
his teeth.
13: He lost his ability to walk.
Today: I’m sitting on a dining room chair pre-
tending to work on an assignment. I’m home for the
weekend, visiting my family. While it might seem
like I’m typing the Spanish paper due Monday, in
reality I’m gazing out at my brother, peering through
the foggy glass window.
I can see the visible difference between him and
his seventh-grade friends. While they run, jump
and shoot baskets, he sits in his scooter looking on
longingly. The other boys have grown taller, stron-
ger and faster. They’ve reached that point where
athletic ability really starts to show. This time in
boys’ lives sticks with me so clearly because when
my brother Sam was this age, he was the fastest kid
I knew. Joseph, however, has been unable to move
like his friends for a while now. His athletic ability is
reduced to essentially throwing a ball from a sitting
position while his friends play the Joe-Joe version of
whatever the sport of the day is.
This stark difference between my brother and his
peers breaks my heart.
His friends are so good to him, though: They
accommodate him when they play baseball in the
sweltering heat of our cul-de-sac or come get my
mom when he has to come inside to the bathroom.
But it doesn’t change one simple fact: Joseph can’t
walk.
Joseph can’t walk. Those words really hit me
whenever I write them or say them out loud. The
unfairness of that statement is not even something I
can begin to unpack.
Although Joseph can’t walk, and it pains me to
accept that, he can hug me. I hug him every chance
I get, because I know one day, those beautiful, per-
fect arms won’t be able to wrap tightly around me
anymore. Hugs are luckily one of Joseph’s favorite
things, so I get them whenever I ask.
People always ask me or my family what it’s like to
live with this, but it’s hard to explain to people who
haven’t experienced this situation the pain of watch-
ing the person you grew up with struggle so much.
The bond between siblings is unexplainable and so is
the relationship I’ve been lucky enough to have with
my brothers. So after growing up building forts and
sandcastles, pestering our parents and having each
other’s backs, Joseph’s sickness feels so heavy.
I couldn’t tell you how he approaches it with such
strength, but I know my spirit feels meek in compari-
son to the resilience he displays as he smiles up at
me when I carry him to his wheelchair, help him off
the couch and lift him when he lies down and can’t
get back up.
I feel defeated when I think of his heart giving out,
his lungs ceasing to breathe. I feel so angry when I
think of the trivial complaints I make every day that
can’t even begin to compare to the prognosis he’s
been given.
I think about the cards my family has been dealt
every day. It’s funny to look back at my 20 years of
life now because I could tell you exactly where the
split is between my life before Duchenne and my life
after. A lot of things fell apart and changed between
these two very distinct time periods. I can remember
as a child planting vegetables in the backyard with
my dad, or singing along to Bob Seger with my broth-
er Sam. These memories are like blurs of color and
youth. They are joyful, but distant.
After the diagnosis, my memories are different—
clearer, sharper. These new memories include more
pain. They include tears and more self-doubt. They
also include happier times; just in this half of my life,
there’s also something else hovering over the Christ-
mas mornings and the movie nights. It’s like this
dark cloud kind of just sitting there, waiting for the
right moment, when you’ve forgotten about it, to tell
you that things will never be completely OK again.
But, in spite of all of this, in spite of the pain, the
tears and the fear of the future, I know Joseph is a
gift to me. I know what a privilege and responsibility
I have because I was given not one, but two young-
er brothers to care for and love. I know how much
Joseph loves me when we’re FaceTiming and he asks
“Katie, when are you coming home?” I know how
hard my parents work to create a life for us that is full
of experiences and joy. And finally, I know that no
matter how much I think the statement “everything
happens for a reason” is absolute bullshit, Joseph —
not his disease — is here for a purpose.
Joseph is here because he knows how to make
my mom, my cousins and I laugh until we cry with
his selfie-stick poses at Christmas. Joseph is here
because he is such a good friend to the neighbors
who knock on the door at godforsaken hours of the
morning asking if he’s ready to play. Joseph is here
because he shamelessly orders a full slab of ribs at
any restaurant they’re available when we all know he
won’t finish it. Joseph is here because he’s the fun-
niest 13-year-old you’ll ever meet and his rendition
of “The Fresh Prince of Bel-Air” theme song is strik-
ingly accurate.
Joseph is here because he defines who he is as
a person, even though Duchenne tries so hard to.
Joseph is here because although he can’t walk or run,
his spirit makes him seem like he can fly. And Joseph
is here because he is a representation of strength that
I will never comprehend.
Joseph is here because he has taught me how to be
brave, and for that, I will always be grateful.
just behind the Second Tallest Palm Tree on the
Lot, and he found an angry chameleon nestled in
the mulch between two tropical shrubs. He spent
10 minutes wondering at a strip of black burlap
sticking inexplicably out of the middle of a man-
grove tree, and then finally tripped over a fallen
coconut and fell face first into a pile of dog shit,
which he now realized had been the source of the
smell all along. He stuck his head up and looked
around for the Metaphor, hoping against hope
that it wasn’t the shit on his face. His eyes ulti-
mately settled on the only viable alternative in
sight — two French bulldogs engaged in a battle
of wills over the offending coconut lying at his
feet.
He began writing then and there, shit-faced as
he was, hoping that he might be able to squeeze
a story out of the Metaphor tussling with itself in
front of him. It came out like this:
What do I do with my Irony?, the Writer thought
to himself. Do I give it to my Characters or do I
keep it for myself? Should I hang it on the Scenery
like wallpaper, or tie it around a tree in the corner
of the yard? Do I plaster it across a locked door like
police tape, or do I hang it on the doorknob like a
“Do Not Disturb” sign or, better yet, a necktie that
lets everyone know I’m having sex in there? Maybe
I should just let it out into the yard so it can enter-
tain itself — I hate taking it for walks, and people
always want to stop me and ask what breed it is. Is
it Dramatic Irony?, they say. Or Situational Irony?
Where did you get it from? Does your Irony have
a pedigree? It won’t bite, will it? I bet you got it
to pick up chicks, didn’t you? Doesn’t it have lots
of health problems? I read an article the other day
about how Irony is so inbred and disfigured it can
hardly stand up, let alone play with other Liter-
ary Devices. Is that true? I hear it sinks if it falls
in the pool, and you have to wipe its ass every time
it takes a shit or else it gets infections — isn’t that
a lot of work? It’s kind of cute I guess, but I don’t
like the noises it makes. Don’t they keep you up at
night?
The truth is that I do not really like my Irony,
the Writer thought, and its noises do keep me up at
night. They’re really quite awful. If it were up to me
I would poison it, shoot it three times, beat it across
the face with a shoe and then dump it in a river
tied up in a burlap sack. Irony is one of those types
that shows up in the middle of the Apocalypse look-
ing like a stray that might also be God. You take
its advice on whether or not to give your son an
aspirin, and the next thing you know it’s dictat-
ing foreign policy. The right thing to do is brutally
murder it, drag the body out to a polytechnic uni-
versity, then melt it down in a cauldron at 4:30 in
the morning and be done with the thing.
But I don’t have any friends at the polytechnic
university, the Writer thought, so I’ll have to find
something else to do with my Irony. Maybe I could
pass it along to one of my relatives, like a fruitcake,
or bring it to the Humane Society and let them
euthanize it. Maybe if I threw enough money at
it, it would leave me alone and buy itself a house
somewhere far away — so far I wouldn’t be able
to hear it snorting when I’m trying to fall asleep. I
might be able to leave it at a convent, he thought,
or convince a priest that it needs to be burned at
the stake. But, God damn it, he thought, I just need
to put it somewhere so I can get back to living my
life!
Read more at michigandaily.com