Tag Archives: Cerebral Palsy

The Human Menagerie

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The reference is to Carl Sandberg’s poem.

O, I got a zoo, I got a menagerie, inside my ribs, under my bony head, under my red-valve heart—and I got something else: it is a man-child heart, a woman-child heart: it is a father and mother and lover: it came from God-Knows-Where; it is going to God-Knows-Where—For I am the keeper of the zoo: I say yes and no: I sing and kill and work: I am a pal of the world: I came from the wilderness.

After 14 years of living at home,  my cousin Alan was institutionalized. His Cerebral Palsy had finally come to the point of seizures at all hours of the day and night.

For 14 years Alan’s bed was just outside the open door between his room and his parents, my Aunt Gertrude and Uncle Bob in South Paris, Maine. His mother slept with an ear open for any change in Alan’s breathing pattern. She had come to learn the breathing changes that preceded a seizure. She would hear the change and rush to Alan’s side.

Alan required round-the-clock care. The years when my Aunt and Uncle felt secure in leaving him alone for shopping or running an errand had now become a wistful memory. My cousin Gwen remembers that their mother could no longer go outside to hang the laundry without calling a neighbor to stay with Alan for 10 minutes. Alan’s care became the all-consuming center of family life to the neglect of Alan’s younger siblings, Dennis (11) and Gwen (7) and the deteriorating health of Uncle Bob and Aunt Gertrude.

In the 14 year of Alan’s life, when things had gone beyond the point where they could care for him adequately, they made the hardest decision of their lives. They admitted him to the Pownal State School and Training Center in New Gloucester, Maine where he spent the last five years of his life with other severely disabled residents. Members of the family made the hour-and-a-half trip to New Gloucester twice a week to be with Alan at Pineland. During those next five years Alan’s friends at Pineland became friends to the entire Smith family.

My cousin Dennis describes the scene at Pownal in words of his own:

These were children with Downs Syndrome, dwarfs of all kinds, microcephalics, hydrocephalics, people we used to call morons, idiots, and imbeciles, and non-ambulatory people like Alan. All of natures mistakes in one big room.

When my mother and I would do concerts for them, they would bring Alan in on a gurney. They would sway to and fro to the music trying to sing or moan to the melody. At first their responses raised the hackles on the back of my neck. It was like a scene out of a Hollywood movie.

Some of the residents assisted in Alan’s care. In his room they would talk to him like dear friends and Alan would respond to them with his familiar ‘ah’s and laughter. I grew to understand he was in his element there with constant attention by those he knew and trusted…. I’m convinced he died a happy, contented young man who was free at last to be himself. Just another human being surrounded with friends who loved him.

The human species itself is what Carl Sandburg said each one of its members is: a menagerie.  We are all in the menagerie, the most ‘abled’ and the least ‘abled’ of us. Every attempt to engineer a species without “mistakes” – a purified race, a super race, a genetically modified species – is a mistake doomed to fail. The wilderness always prevails.

Those who have met the zoo within themselves come to understand that we all come from the wilderness just outside the castle walls and moats of human pride and self-deception:

“…it [i.e., the zoo inside my ribs] came from God-Knows-Where; it is going to God-Knows-Where….I am a pal of the world: I came from the wilderness.”

He had his own means of communication

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My cousin Dennis sent this following the post about his older brother Alan who was paralyzed with Cerebral Palsy. See the earlier two posts on Views from the Edge for background information.

“For all the limitations Alan suffered, he was so loved by all of us and in his own way could express his love with ‘ah’s and laughter and joy that came through his facial expressions, vocal inflections and expressive eyes. He had his own means of communication which Gwen and I grew to understand. He could express all the human emotions. Alan could speak in his own special way. He called our Dad ‘fata’.

“I learned so much about life and what real love is from growing up with him. We never felt him a burden in any way. We all helped feed him, bathe him and change his diapers.  It was a family project that we all did willingly.

“When he was put in an institution we missed his laughter and grieved for him deeply as a family. I don’t think any member of my family was loved and admired more than Alan.

“My father, mother and sister would be so proud of this blog.  Their hearts would soar knowing Alan is part of the real world again and a living example of God’s love for us all.  Alan did not live in vain.  He was a courageous person who had to battle through his palsy to be just another human being like you and me.

“No father cared more for a son than my  Dad.  He was entirely devoted to him.  And Alan looked up to him with adoration in his eyes.  Alan could utter several words much like a one year old. He used his throat and lips to utter a very gutteral sound that few could understand but the immediate family.  His ‘ah’s were his method of communicating his emotions and it varied depending on the circumstance.  He understood everything you said to him and he would respond in his own way to let you know that he understood what you were saying.  His eyes and facial expressions spoke a thousand words.”

Joy and Gratitude – my cousin Alan

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Over lunch today my 89 year-old friend asked what had drawn my attention to my paralyzed first cousin Alan who never spoke a word due to Cerebral Palsy (see Views from the Edge’s  post “Father and Son – Bob and Alan”).

Alan was completely helpless. His body was rigid. He had no control over his bodily functions or anything else. He was utterly dependent on his family. He could not feed himself. He couldn’t speak. Even so, his eyes communicated joy.

The joy of kinship and love came from inside himself in spite of all.  I want the joy and gratitude that emanated from Alan’s eyes and smile whenever we came into each other’s presence. Control is a debilitating disability – an isolating illusion – among the “abled”.

Father and Son – Bob and Alan

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Bob Smith and his first-born child, my cousin Alan, never had what you and I would call a normal conversation. But I suspect they “talked”more deeply in their own father-son ways.

Alan’s tongue and body were held captive from birth by Cerebral Palsy. He never spoke a word that I could understand.

Each morning Alan’s mother, my Aunt Gertrude, and his father, my Uncle Bob, lifted Alan from his bed, cared for his morning needs with tender respectfulness, carried him downstairs to the kitchen for breakfast. Sitting on his father’s lap, the spoon and fork came to his mouth from the hand of his father. Uncle Bob would then carry Alan to the parlor, the back room on the first floor of the house on Porter Street, where Alan would lie until lunch. Uncle Bob came home from the Oxford County Court House for lunch every day  to be with Alan, Gertrude, and Alan’s young brother and sister, my cousins Dennis and Gwen. He would go to the den, lug Alan to the kitchen, feed him lunch…. Repeat, repeat, repeat at dinner. Carry Alan upstairs, prepare him for bed, and, as I imagine it, say a prayer that Alan could hear and understand but could not speak. He did that for 14 years.

My time with Uncle Bob and Alan dates back to my earliest years. Every summer I stayed at my uncle and aunt’s house for a week while the rest of my family stayed with my grandparents. My relationship with my cousin Dennis, only six months older than I, was special enough to separate me out for special time at the house on Porter Street.

Looking back on it now awakens me to the sense of heaviness that came over me watching Alan, seeing the joy in his eyes and the contorted smile that broke out on his face, and listening to the moans of greeting and sheer delight that came from his palsied vocal chords whenever he and I would see each other after the long year’s absences between my family’s vacations.

There was a bond deeper than words. The bond of eyes and smiles. The bond of kinship and shared joy, as well as sorrow. I always wondered what was going on in Alan’s head. Aunt Gertrude, an elementary school teacher, claimed he was very intelligent, but there was no way to measure it. Had he been born 40 years later Alan might have been a Stephen Hawking “talking” by other means, but he wasn’t. He was born in 1939. And if there was a silent bond of awkwardly expressed love between two cousins whose visits were annual, how much deeper and familiar was that bond between the father and his son?

I’ve often wondered what it was like being Alan. I’ve scolded myself in times of self-pity, and sought the deep courage and joy that emanated from Alan.

I’ve also marveled at Uncle Bob, a wrrior in the trenches, fighting despair over Alan’s plight, what might have been and would never be for him, rising to the daily-ness of it all, some days resenting it, some days wishing he could take his family of vacations like other families, some days finding comfort and courage playing a great sacred music piece on the organ of First Congregational Church of South Paris where he served as Organist and Choir Master for 40 years. Perhaps the familiar hymn tune “Serenity” set to John Greenleaf Whittier’s poem “Immortal Love, Forever Full”, encouraging the love he bore for his speechless son:

Im-mort-al Love, for-ev-er full,
For-ev-er flow-ing free,
For-ev-er shared, for-ev-er whole,
A nev-er ebb-ing sea!

The heal-ing of [Christ’s] seamless dress
Is by our beds in pain;
We touch Him in life’s throng and press,
And we are whole a-gain.

At the end of really good days when joy was high with thanksgiving for the father-son bond with Alan, I imagine him walking down Main Street to the darkened church, taking his seat on the organ bench with the lights out except for the organ light, his feet pumping the pedals, his fingers flying over the keyboards and reaching for the stops to play the Widor Toccata he played every Easter, a lush oasis “in life’s throng and press.”