By Barbara Leonhard | Featured Contributor
[Part 1 – Hope Was Not a Loss: A Story About Measles Encephalitis]
My experience with measles encephalitis taught me a great deal. The greatest realization was that I could change my destiny. I had every reason to remain in the wheelchair because of the attention, sympathy, and love that not only I but also my parents received because of their poor little girl. But the attention from others could not offset the loneliness, the feelings of being diminutive and helpless, and the boredom.
To Be Whole
I thought a lot about my choice to teach myself how to walk again. Let’s face it, it is easy to think fatalistically and accept an outcome without debating it. After all, the doctor told me I was destined to use that chair for the rest of my life. Because my mother’s father was a respected surgeon, we learned not to doubt what a doctor said. However, in all the time I had to think, it seemed unfair for me to have to live that way.
People tried to convince me with the toys, dolls, and tea sets, that this condition had amenities. I was so delighted to be the princess! And yet, my heart was crying out to be whole. That is why I made a different choice and threw myself off that wheelchair.
I learned how badly my life could have gone several years later when we were living in Sault Ste. Marie, Michigan. Mom and I helped give physical therapy to a young boy who didn’t recover from measles encephalitis like I did. He was left with permanent neurological damage, paralysis, and loss of speech. We would move his arms and legs back and forth, a method his mom called “pattern practice”. He would never regain full function due to the extensive neurological damage.
While I was volunteering to help this boy, I suffered some survivor’s guilt, not understanding why I was able to recover and he wasn’t. Maybe it was because he was much younger than me was when I was sick. Maybe I had had a milder case. Maybe encephalitis resolves itself in some cases. Maybe I was spared because Dad was facing so much loss. His mother had died exactly one year earlier, and he was losing his father.
And that takes me back to the last visit with grandpa in the hospital. Perhaps what I thought was a real visit to my grandfather was a dream.
Or maybe it was a near-death experience. There is speculation that the soul travels when people are in comas. Maybe he and I were both in a coma. I recall three to five strangers with us in his hospital room. I wanted to go with Grandpa, but they told me I had to return to my room. I pleaded and pleaded, but the group of people in the room explained I couldn’t remain there. This exchange went on back and forth until I woke up from my coma.
Like I said earlier, if I was in a coma, why would my parents be taking me to Grandpa’s room instead of the ER? Also, if I couldn’t talk, why do I recall talking? And if I couldn’t stand, why do I recall standing next to him?
For years, this memory has been on my mind, but I didn’t realize the import of it until I took time to do some memoir writing about it. It finally sank in that I met with a spiritual counsel who told me that it wasn’t my time to die. I think my grandfather asked that I be spared, which led to my complete healing.
I’ll never know the answers. However, I do know the decision to walk again involved a choice. I could have chosen to remain in the wheelchair. No one expected that to change, not the doctor, not my parents, not society. My thinking, my belief, was that I could walk, and so I set out to do that. Perhaps I had support from the spiritual realm from some bargain made to spare me. Maybe just my fire of desire to be healed and whole got me out of that chair. The experience inspired this poem.
Hope was Not a Loss
My body was a cage
With only eyes for doors.
My arms, contorted,
Like branches twisted in shadows.
Voices, hollow sounds,
Called from the dinner table, but
My legs, dead trunks,
Held me to a bed
With a view to other children.
How they danced,
Like pansies and violets,
Their blooms outstretched,
Gathering rays for Grace
But not for the night of storm
Clashing in my bones.
My lips held back the truth.
My cries were muffled in my throat.
Each wail, the language of stones
Falling on deaf ears.
Mother spoke the tunes of clouds.
Her words carried her young to the stars,
Not to the dead rocks lining
The bed of flowers
That could be me.
Rocks and earth held down
This young one with muted cries.
I’m still here.
Don’t forget the light inside this bud
Afflicted with blight.
How I want to burst out of
This stiff casing
To stretch my arms and fingers
Like tiny leaves unfolding in dawn.
I am stuck in mud,
Too dense for birth;
Too turbid for food.
No gardener is churning the soil
To give me air.
I was buried under new blooms
Dressed in violet and pink swaddling,
Dancing on my grave and beckoning,
“Come and play; the day is divine.”
And so, I clawed my way
Out of the stiff core,
Muck and stone,
And peered into light
Blinding my infant eyes.
My arms and fingers unfolded
Into new green.
My tiny legs stretched into roots
Holding my core as it danced
In breezes carrying buoyant rays
Like waves hitting my face.
Is birth a choice?
Or is Spirit’s breath
Irascible in creation?
Can a flower remain a seed forever?
Or does it cast its casing aside
In a mighty battle
To forage life?
The seed knows Choice;
Its soul has Will.
For some, the earth’s bed is always home.
For this one, hope was not a loss.
The poem shows my recovery was as fierce as creation because my desire to walk again was akin to the force contained inside the flower seed exploding into bloom. Indeed, I was deeply changed by this event. A new identity emerged. A new view of life and of my own power to heal myself.
Part 3 – Avoiding the Tragedy: A Look into Disease Prevention
Barbara Leonhard is a writer, poet, and blogger at Extraordinary Sunshine Weaver. Her podcast Poetry: The Memoir of the Soul explores universal themes such as Grief, Kindness, and Presence. She taught writing for many years at the University of Missouri and is the author of Discoveries in Academic Writing. She is also a regular contributor to Free Verse Revolution and Go Dog Go Café.
Poetry Blog: extraordinarysunshineweaver.blog
Poetry Podcast: meelosmom.podbean.com
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A wonderful and inspiring story. Thanks for sharing.