I have Multiple Sclerosis.
The irony of the diagnosis
is not lost on me-
little miss straight A’s
most likely to succeed
Phi Beta Kappa
Sara Quayle, MD.
My amazing brain is riddled with scars.
Yet I am too much in my head
dwelling in my dismal house of loss.
Yet slowly, slowly my mind accepts
changes in body and life
and I am able to receive the gift
of slowing down, of mindfulness
discovering the vastness of the Internet.
I economize my words.
I read a library of books.
I watch a hundred movies I’ve missed
revise my bucket list.
The irony plays itself out day by day.
Cloistered in silent darkness
I am half awake
in a state between
knowing and not knowing
she is gone.
I wake fully
find myself a half-person.
My tongue stumbles
on the words that describe
The woman I was-
capable and articulate
whole and independent
is no more.
She is gone.
My heart is broken.
Over and over
I weep inconsolably for her.
Can there be a greater loss
than this loss of self?
Slowly I grapple with one hard truth.
She is gone and my life is not what I chose.
On the stiffened remains of her body
I vow to honor her.
I have been in the hospital for five months,
a prisoner of my broken body.
Kind caregivers have been my keepers,
pain and dysfunction my loathsome cell mates.
Summer and fall have come and gone.
My gardens have bloomed and withered.
The baby birds have flown away.
The pumpkins have all been picked.
Paths we’ve always walked
have changed from green to gold,
while leaves that rustled in the breeze
have given themselves to the earth.
For me there was no glimmer
of fireflies on warm evenings,
no cacophony of birds at sunrise.
On bright mornings the light was gray.
For more than a hundred days
the air I have breathed is stale.
For as many haunting, sleepless nights
I’ve not beheld the stars in the sky.
Someone else has fed the dog,
watered my plants,
opened my mail.
Colleagues have cared for my patients.
Lives have gone on without me,
just as if I had died.
Nevertheless, I am here, such as I am.
I am alive.
Changed but alive.
And I have begun
to write again.
On “MS Irony”
All my life, I have been defined by my intellect, especially as a student and a pediatrician and, yes, a poet. MS is a disease that affects the brain and nervous system. It robs people of function and control in different ways, sometimes including cognition. Fortunately, my intellect is spared and I am aware of the hurtful irony of having this disease of the brain. I have been forced to reinvent myself and find new ways to experience the world.
In this poem, I take the reader to the time when I was suffering a great deal and was cut off from the familiar. During my illness, I completely missed the change of seasons and the rituals that come with them. I try to convey what it’s like to feel like a living ghost, watching life go on around you as time passes. In the final stanza, I find my muse, which had left me for a long time.
In writing my poems, I strive to place the reader in the moment, use words to bring them with me. I write in a variety of styles, but this outpouring of grief lent itself to blank verse. This poem was written to express the initial overwhelming grief I experienced at the sudden onset of illness that caused physical suffering and loss of function and even the power of speech. I was isolated and grieving for the life I had built. As time went on, I cried for hours every day. In my despair, I struggled to regain a sense of self.
Sara Quayle is a native Vermonter. Her love of nature and experiences as a mother, wife and pediatrician inspire much of her poetry. She is afflicted with multiple sclerosis, which became disabling 2014. Some of her writing is about her illness, its impact and the ensuing loss and self reinvention. She’s is currently collaborating with her daughter on a collection of their poems. She now lives with gratitude at The Boston Home, a home for people with severe neurological disorders. She enjoys the outdoors, theater, reading extensively and watercolor painting.