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Disabilities Cured: What would that mean?

Disabilities Cured: What would that mean?

In September 2016, an amazing development came for myself and others with Duchenne Muscular Dystrophy (DMD): the first treatment for DMD was approved by the FDA. DMD is caused by a missing piece of genetic code for the muscle protein dystrophin, and the new treatment, called eteplirsen, partially mends the genetic gap, allowing the body to produce a shortened version of dystrophin. This means that recipients of the treatment can gain some amount of functional dystrophin. While the new drug is not a cure and treats only a portion of DMD patients, the development of eteplirsen reveals a possible future where all physical disabilities are cured.

The following is a poem dealing with both the physical and psychological effects of having a disability cured.

When the genetic skip
that robs my muscles
of proper function
is completely resolved,
What will become of me?

I am not
my disease,
but neither am I
me plus a defect.
My mutation
makes me not
less of me. I am
complete with
my disease, my disability,
but also whole without
my condition.

I yearn to be free
of this illness
that molds my everyday,
that shapes my perspective,
that infuses my identity.
I want to be free,
but want to stay tied.
Give me
the building of character,
but not
the weakness of heart and lung;
Give me
the birth of a unique view,
but not
the pain and struggle
to do daily tasks.

But don’t
misread me.
I don’t want to keep
my disease. It isn’t
a boon to me
to have weakened
muscles when muscles
are what keep me
breathing and beating.
So, speaking of biology/physiology
my disability gives nothing,
only takes.
So, speaking of biology/physiology
my illness going
is all joyous,
no hint of sweet farewell.

But, speaking of psychology,
the mark will be forever.
Forever, I will know
about being okay
with assistance.
Forever, I will know
the value
of technology.
Forever, I will know
the importance
of accessibility.
Forever, I will know
how to navigate
a world built for others
with other abilities.

But nonetheless,
I will have
one less problem
in my life,
and that makes
all the difference.

(Illustration by Suzanne Berton)

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About Tatsuro Nakajima

I am a recent magna cum laude graduate from Seattle Pacific University, where I studied literature and poetry. My writing interests include disability awareness, nature/conservation, culture, and politics. In my poetry, my main focus has been on the topic of death. This sounds dismal, but death is a complex theme that requires deep and vast exploration. When I'm not writing, I enjoy caring for my coral reef. Though I write about death, I surround myself with life.

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