Manuel Lubinus, patient-centered research advisor, MSU

But Muscles I Love

I suffer from Inclusion Body Myositis, so I decided to write this poem last year after starting to experience some of the symptoms of this disease.1 min


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But Muscles I love

No, I am not Schwarzenegger
I was never Mister Universe
never debuted on the WWF,
but muscles I love.

I was not the derelict body,
in the Body Works™
plastination exhibit,
but muscles I love.

50 souls out of a million
won the lottery of rare,
a disease of this type
muscles destroyed by friendly fire,
discharges of bombs and rockets,
the artillery of cellular proportions
but muscles I love.

Leery souls bear the disease
with daily micro-injuries,
humbling our spirits,
questioning our next move:
a cane, a wheelchair, a golden chair
downhill from there,
but muscles I love.

II

Inside the flesh, deep in the Z-fibers
where those ex-vivo experiments take place,
a needle pushes inside you
bringing a morsel of a muscle,
observing through a microscope,
Congo-red stained vacuoles,
a Kosovar field of debris,
but muscles I love.

Myositis patients, ask family and friends to donate plasma

Fat cell tycoons are invading
inside the fascia, the neighborhood is changing
boarded-up fibers taken up by adipose gentrification,
but muscles I love.

III

Inclusion Body Myositis
the fight against the machine
inside your body of water, salt, calcium
and the last hope of a cure,
but muscles I love.

Your body kills
there are natural killer cells
trained at the Thymus Institute
antibodies against muscle
autophagy in the killing fields
mitochondria lighting off,
but muscles I love.

Quadriceps, four times worse than soleus
no longer rising from chairs,
nor hiking the ways of the pilgrims,
Falling, rising, dropping, choking,
climbing the snail stairs to heaven,
but muscles I love.

Every day
out of bed, into the world
my thin muscles are with me
part of the time, out in fatigues
I count my steps
careful not to fall
ever so grateful,

But muscles I love

Muscle fibers with inclusion body infiltrates


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Manuel Lubinus

I was going about my life when I was diagnosed with IBM, at age 55. This was now the opportunity to start my #myositislife and start living in the "sick side of the life" and familiarize myself with a new group of friends, foundations and a new set of  challenges and words such as Real World Evidence and the 6-minute-walk.

I live in Texas, I have two college age daughters and my wife, and hope to dedicate enough time to understand what myositis means. My university training was in Immunology and Microbiology, so I have a big respect for the immune system, whatever directions it goes.

I listen to  music everyday, I love poetry and write some during my free time

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