The Human Menagerie

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

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

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”.