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!

 
 
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