READING

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.

mm
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.


RELATED POST

  • yvonne ayliffe

    What a beautiful piece of work, I am putting it on Facebook and hope everyone will read it and take it further with them everyday. Thank you for keeping me in the link. You are growing in stature everyday with your writing.
    YX

  • Rita Sima

    Hello Tatsuro! My granddaughter Mahllie and I just read your poem, and enjoyed it very much.
    Much love to you and your family 🙂

  • Tatsuro Nakajima

    Thank you for reading my poem! I’m glad you liked it.

  • Linda McCrea

    Tatsuro your piece was so inspiring! Perfect! This is a great work to share with my daughter, Tina, and many others I know with disabilities! You are helping many with your work!💖✨

  • TSN

    Thank you for your kind words!

  • Joanna Cook

    Tatsuro – I love your insight and your eloquent writing – always have. You have so much to offer with your words of wisdom. You are truly an inspiration and have so much to teach us all. Thank you my friend!