The Poetry of Survival



Poetry uses words to process emotions, and stroke appears to bring up plenty of emotions. We present to you the poetry of five stroke survivors...and an invitation (and guidance) from a poetry therapist to liberate your own muse.

Yvonne Kent Pateras

Athens, Greece

I had lived my life as a fearless, full-of-energy, optimistic person, with high initiative, often in excess (as I had been told), perhaps a bit careless, bold to the point of ignoring danger. Well, I was born a Sagittarius and, in the Chinese zodiac, a horse, for those who believe in or blame the stars for their personality. I do not know if I had a hobby. Judging from what I did in my free time, I was a bookworm — reading, reading, reading!

Then, like lightning, on the evening of March 26, 2012, a massive hemorrhagic stroke hit me, leaving me unable to speak or move. After four months in hospital, to everyone’s surprise, with immense courage and effort, I was able to speak well and walk. Unexpectedly though, three ischemic strokes and another hemorrhagic one followed, between then and May 2013. Treatment was complicated as the two forms of stroke require contrasting medication. Endless effort and persistence rewarded me with perfect walk. Only a light speech impediment and a right hand that is not fully functioning are the scars now.

Why poetry? Following the stroke, I went through a spell of re-learning, like being born again. Feelings were overpowering my concentration and understanding. Verses facilitated expression of my feelings. Coming with up a book of poems and publishing it gave me utmost satisfaction, particularly as the response from stroke survivors was so moving. I had written verses before and shall continue to; poetry takes the weight off my legs and gives me wings!


Memories

Memories that travel through the

Revolving doors of my mind.

Never ending corridors, with

Scattered thoughts

Before me unwind.

It must be autumn today in my head,

For the leaves of paper

Billow and blow. I must put some

Order in this chaos, and not let it grow.

Each leaf has a word,

Each word has a sequence,

Each sequence has a method,

Which all starts with a word.

I am so glad it is autumn

in my head today,

And words surround me.

Because it is only a matter of time

Until one escapes from my lips.


Fighting Aphasia

I tried to think of a word today

And I could not.

A fog had descended in my head,

It would not allow any words to

Slip through.

It was dense and impregnable,

Not even light could penetrate

Through this dark

cloying acquiescence.

Words elude,

Not a word of anger,

Not a word of humor or desire,

Not a word of love or hate.

Nothing that would resemble

The beginning of a word,

To allow a sentence to be molded

Like clay into something desired,

Anything!

I feel soulless,

Morally bankrupt.

The keeper of a million words,

That was me.

Now I can’t think of a mono syllable — Cruel destiny.


A Memory Box

Make a box to hold my memories.

Make it strong and sturdy.

Get a lock and key.

I want to be sure nobody can access,

Nobody but me.

I want to remember everything.

So, come, surprise me.

What can I learn today?

Which flower’s smell gives me pleasure?

Please pray, tell.

Which memory will you unlock

For me today?

All fresh and new.

The memories begin to trickle,

And then they begin to flow.

I feel such relief and utter satisfaction,

As the memory begins

to blossom and grow.

We talk and you show me numbers,

I start to remember how to count.

My excitement begins to grow.

How many things have I forgotten?

That’s what I want to know.


John Yurgens

Fort Gratiot, Michigan

I had a right hemispheric cerebral aneurysm and stroke on November 12, 2013 (11-12-13). I attempted to return to work only five months post-stroke, way too soon. Because of multiple impairments that I was unaware of, the attempt failed miserably. I continue to have short-term memory issues and left-side weakness. I am legally blind also.

I have been blessed with the gift of writing and it has proven very therapeutic, it has aided me in sorting out the new me and my new normal.

I am humbled, honored and blessed to have the opportunity to share some of my writing with people; it provides some insight into “one man’s journey.” I hope some of my words offer some comfort to someone along their journey. After all, we are all in this together. We must look out for each other.

I joined The Stroke Network in January 2015. In June 2016, I became a contributing writer for The Stroke Network’s online monthly newsletter. My column is “Healing with Poetry.”


Odd Man Out?

Shared words!

Shared Emotions; fears, joys, frustrations,

celebrations, support and inspirations

A shared life-altering experience

All different, yet all the same just as well.

A kinship formed with words.

A bond that will not break.

A gut-level instinctual fondness

For names on a computer screen.

Is it odd to care so strongly for so many

That I have never met and likely never will?

I wear my heart on my sleeve

I bare my inner being to you

MY FRIENDS

Our Shared kind words of hope, encouragement

and support are life sustaining.

If any call me odd,

Then I am proud to be

“The odd man out!”


Denice DeAntonio

Fleetwood, Pennsylvania

I was 42 when I had a hemorrhagic stroke in December 2008. I had no risk factors, and it was most likely caused by medicine that was prescribed at the time. The stroke damaged the right parietal lobe. There is also an infarct in the occipital lobe as well.

My first indication that something was wrong was a seizure on December 6, while shopping at Target. I was rushed to the hospital where they discovered the bleed. I needed lifesaving surgery. I spent time on life support, and the month of December in an acute care facility.

In January 2009, I was transferred to a rehabilitation hospital. I was very agitated and tried to stand in the bed. My leg got caught between the bed and the side rail, and I broke my left ankle. That made recovery interesting.

I have left-side weakness with spasticity and visual field cuts. I struggle in crowds because I don’t see things on my left side. I often find bruises on the left side of my body because I walked into something I didn’t see.

My service dog, Finley, helps me navigate my world. I use Finley for balance and retrieval. He also alerts me when someone is on my left side.

For obvious reasons, I had to surrender my driver’s license. I taught high school and could not return to that job. I started writing to fill the void. I found writing — prose or poetry — to be cathartic. Writing about my stroke helps me deal with the ongoing grieving that many stroke survivors feel. I enjoy sharing my writing. When other people read it, I feel like I am still contributing to society. I also find strength in sharing my story and educating others. This quote from Anne Frank describes the role of writing in my recovery: “I can shake off everything as I write, my sorrows disappear, my courage is reborn.”


Ultimate Betrayal

How can you do this to me, I cry.

I thought we had an understanding, a great relationship.

I take care of you; feed you nutritious foods; make sure you exercise.

I do everything I can to keep you healthy.

You, in turn, promised to protect me from harm.

You fought for me when I was ill.

You did whatever was needed to restore my health.

You allowed the medicines to do their job,

But you, too, were rallying for me, quietly helping me fight germs.

When I was injured you knew what to do to help me heal.

Together we were the perfect couple.

It was a beautiful love story. There was equanimity in our life.

But without warning, it all changed.

Maybe there were clues,

Some signs and symptoms I ignored,

And then one day, without warning you abandoned me and our relationship.

And I feel betrayed.

It is the ultimate betrayal — When your body fails you.


Jon Obermeyer

Durham, North Carolina

I am a writer and poet, now living in Durham, North Carolina. In October 2014, in California, I had an ischemic stroke in my sleep and was not treated for 11 hours. I was in good physical shape, walking the steep hills of San Francisco, but I was not watching my blood pressure or my cholesterol.

I learned to walk without a cane within a week. I’ve re-learned how to play guitar, and type on my laptop, which made me wonder: “Why are all the good letters of the English alphabet on the left side of the keyboard?”

A lifelong published poet, I find writing verse has a calming effect on my blood pressure (but evidently does not increase my good cholesterol). I’ve enjoyed the new friends I’ve met in my stroke support groups.

I would like to see more depression counseling referrals available upon hospital discharge, not just physical therapy scheduling. I experienced debilitating depression two months post-stroke, which caused me to leave California and take up residence in affordable North Carolina, closer to my adult daughters.

I believe that my stroke is a new friend who has taught me a deeper sense of compassion, self-care and value of life on this planet.


The Guest

The first death

of my life

enters my sleep

in a tiny dose.

Pale grey jelly bean

on the MRI,

a speck of the brain

that’s never coming back.

Left side

of my body un-synched:

balance, speech,

and finger strength.

New brain cells sprout,

like green seedlings

on a forest floor,

the first responders.

Silent,

sobering,

sinistral,

(out of left field)

my new best friend

takes the seat

I have offered him.


Margie Stanko

St. Helens, Oregon

In 1981, I survived a virus that attacked my central nervous system, leaving me with intermittent paralysis and cognitive deficits for many years. My philosophy became: Words speak the rhythm of life and the body tells the story. Then, in 1994, I survived a severe traumatic brain injury. I pursued traditional and alternative medical care, and by 2004, I was back on my own: dancing, writing, performing, teaching — loving life again.

In September 2004, I was lifting my morning coffee to my lips when something went “POP!” just above the brainstem. The mug never made it to my mouth. My thoughts became disordered. My language deteriorated. My right side grew heavy and weak.

The Rusk Institute in New York City, which I fondly remember as Brain Damage School, is where I returned to learn language again, to undergo remediation therapy again, to learn to walk without falling again. About two years later, I was able to resume just about everything I had mastered twice before.

Language can still be elusive, especially when fatigued. The weakness on my right side continues to be a challenge. Yet, I am happily living in rural Oregon, where I work as the Director of Life Enrichment at a small skilled nursing facility, providing a sense of dignity, grace and worthiness to the elders in their final phase of life.


Just Say No

think I am the squeal of the door hinge

as you both leave, returning to Charleston

after a Labor Day weekend visit.

I think I am the coffee in my mug,

the one you gave to me 20 years ago

when I turned 35.

I am now lukewarm,

sweetened by the memories

of the morning and our life.

I think I am my right arm

lifting the cup to my mouth, no

tilting the rim of the mug to my lips, no

my lips unable to pucker, no

as the back of my brain, no

just above the brain stem goes POP, no

and when you phone me

I think, no

from the airport, no

to say your plane is delayed, no

so is my speech

and you ask me if everything’s all right

and I say, I think, no

so no,

I think,

because language is gone again, no

because I can’t lift my right arm, no

because I can’t grasp

with my right hand, no

because I can’t stand on my right leg, no

and you, not knowing,

just thinking I awoke from a nap, no

used to my not knowing my right

from my left at those times, no

said I Love You

and I became those words

unable to say them back

NO!

I didn’t go to the emergency room,

I say, I think, to Dr. Shen

I heard and felt a pop

right here in my brain, no

I show him, no

and then everything changed, no

You’ve had a stroke,

no

no

no

I am the tongue twisting

around the hard sounds

the consonants of life, I am the

tongue slipping over the soft sounds,

the vowels of my existence

I am the speech therapist’s office,

it’s two scratchy chairs, on wheels,

that I spin on, no

I am the buttons being pressed

on the phone learning to follow

directions, again, no

I am the gym in the hospital,

the right arm lifting 24 times 3x

times a day to the tune of

“Yes I Can!” and

Madonna’s “Just Like A Virgin”

I am the brain damage doctor

determining deficits

decidedly different than before

I am alliteration astounding my ear,

making all of you hear

what sounds slip

from my tongue before my brain

can tell it which way to turn

I am sipping my coffee

from that mug, today,

10 years later, I think, sometimes stilled

by my own clumsiness, no, as the brown,

milky fluid drips down my chin,

no, staining my top

with the residue of loss.

No.

 

Learn more about the therapeutic qualities of writing poetry and get tips for trying it yourself from poetry therapist Sherry Reiter in our companion piece, No Fight, No Flight . . . Just Write!

This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.

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AHA-ASA Resources

The Support Network

When faced with challenges recovering from heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey.

Stroke Family Warmline

The Warmline connects stroke survivors and their families with an ASA team member who can provide support, helpful information or just a listening ear. We have trained several members of ASA's national call

Let's Talk About Stroke Patient Information Sheets

Let's Talk About Stroke is a series of downloadable patient information sheets, created by the American Stroke Association, that presents information in a question-and-answer format that's brief, easy to follow and easy to read.

Request Free Stroke Information Packets

Fill out this online form to request free information about a variety of post-stroke topics.

Caregiver Guide to Stroke

The Caregiver Guide to Stroke is meant to help caregivers better navigate the recovery process and the financial and social implications of a stroke.

Tips for Daily Living Library

This volunteer-powered library gathers tips and ideas from stroke survivors, caregivers and healthcare professionals all over the country who’ve created or discovered adaptive and often innovative ways to get things done!

Stroke Support Group Finder

To find a group near you, simply enter your ZIP code and a mile radius. If your initial search does not pull up any groups, try
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Departments

Stroke Notes

Stroke-related news you can use about new scientific findings, public policy, programs and resources.

Readers Room

Articles, poems and art submitted by stroke survivors and their loved ones.

Life Is Why

Everyone has a reason to live a longer, healthier life. These stroke survivors, caregivers and others share their 'whys'. We'd love for you to share yours, too!

Everyday Survival

Practical tips and advice for day-to day living after stroke.

Life At The Curb

A unique perspective on survival by comedian and stroke survivor John Kawie.

Simple Cooking

Cooking at home can be a daunting task, but a rewarding one for your diet and lifestyle (and your wallet). Making small changes in your diet is important to your heart health. Here are simple, healthy and affordable recipes and cooking tips.

Support Showcase

Our new department highlighting the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!