Jabberwocky (eBook)

Steven Gardner (Autor)

eBook Download: EPUB

2021 | 1. Auflage
100 Seiten
Made for Success Publishing (Verlag)
978-1-64146-630-1 (ISBN)

Infos

"e;This is a holy book"e; -Rabbi Lawrence KushnerGraham Hale Gardner died before turning twenty-three and never learned to walk or speak due to severe cerebral palsy complicated by epilepsy. Yet he left a legacy of love and compassion that deeply moved scores of people from widely different backgrounds.How was that possible?Graham's story, written through the eyes of his father, speaks of the enormous legacy left by a boy who never spoke. A story that raises provocative questions about the "e;invisible lines of connection"e; that make us human.Graham was a strikingly beautiful boy who faced formidable challenges on a daily basis that most of us will never encounter. His ability to confront adversity with resilience and grace astonished and inspired nearly everyone whose lives he touched.On the bucolic island of Martha's Vineyard, at a pioneering summer camp for the disabled, a place "e;where hope flourishes,"e; Graham and his father become camper and camp doctor. There, they encounter an eclectic group of people who eat, work and create together. They write and cry together. They argue and dance together.Camp Jabberwocky, as it is widely known, embraces the boy and his father and they become part of a passionate and zany extended family that will forever change how they see the world.As the years pass, Graham and his parents experience both surprising adventures and formidable challenges. Wherever they live and travel, they encounter people who are drawn to Graham. These people, from widely different backgrounds, want to be near him, to assist in his care and to laugh with him. To them, the person they uniformly cherish is nothing less than a living angel.Can we imagine living in a parallel universe known as "e;Jabberwocky,"e; where people open their hearts and minds to those who are different and nobody is left behind?

Textauszug

1

AT FIRST

Nothing seemed strange at the beginning. Cynthia and I were first-time parents. We knew little about the developmental milestones that babies are expected to reach at certain dates during the first year of life. We had a beautiful baby boy who was unusually cranky. That was all. But, at some indiscernible point in time, Cynthia and I developed concerns. They were vague at first.

Our gorgeous son, Graham, would not hold a rattle. He did not try to crawl, and he would not follow a moving object, like his mother’s face, with his eyes. He rarely slept and appeared uncomfortable much of the time. The pediatrician found nothing obviously wrong except that his head circumference was very small, according to the growth charts in the exam room. On subsequent visits, we watched with increasing trepidation as the physician connected the dots on those simple graphs. The routine ritual of the “well-baby visit” became a source of dread. Graham’s head circumference was not catching up with even the lowest of the normal growth curves, suggesting that his brain was not developing properly.

On a sultry July day, while I was holding him in our little yard in the seaside town of Marblehead, fifteen miles north of Boston, Graham had a grand mal seizure. A kindly neighbor who was watering her garden across the street drove us to the local ER so that we would not have to wait for an ambulance. The convulsion continued during the harrowing ride to the hospital as I held our tiny child against my chest, trying frantically to keep him from biting his tongue.

I was an internal medicine physician on the staff of that very hospital, and I had seen every kind of medical emergency during my residency training at Boston’s Massachusetts General Hospital (MGH). But the sight of my own son, unconscious and flailing wildly, being stuck with needles in order to administer intravenous medicines, was horrifying. I watched in panic as the IV drug that finally stopped Graham’s seizure also stopped his breathing. The pediatric resident and I frantically grabbed a tiny bag valve mask and pushed air into Graham’s lungs. Luck was with us in the form of a senior anesthesiologist who happened to be in the ER that weekend day. The calm gray-haired stranger quietly took over and skillfully “bagged” Graham with oxygen from the device for nearly an hour before I saw my son finally start to breathe on his own.

After that day, Cynthia and I faced the possibility that something was seriously wrong with our son. Following a dizzying series of tests and specialist visits, we asked for a meeting with Graham’s pediatrician. For the first time, we heard the term cerebral palsy (CP) applied to our boy. The doctor hadn’t wanted to have that conversation with us until she was sure, but now she was convinced. Something had injured Graham’s brain. She told us to be prepared for the possibility that Graham would never walk or ride a bike.

Soon we began to meet with the first of many kind people who work in various ways with children who are developing slowly. We learned that cerebral palsy can be mild or severe. At first we were certain that, if we worked hard with all those good people, Graham’s disability would be mild. But Graham’s CP was not mild. During the next twenty-two years, he would never feed himself or speak. He would never even roll over in bed without assistance.

“Don’t know much about you

Don’t know who you are

We were doing fine without you

But we could only go so far

Don’t know why you chose us

Were you watching from above

Is there someone there who knows us

Said we’d give you all our love.”

—Mark Cohn, “The Things We’ve Handed Down”

Cerebral palsy is a wastebasket term for a variety of conditions that injure nerves prior to or during birth. The injury can be mild or severe. Some individuals are affected so minimally that only the trace of a limp reveals damage to the brain or spinal cord. Other people, like Graham, have more profound damage to nerve cells and require wheelchairs and assistance with all of their daily activities. The cause of CP is frequently unknown. The human brain develops throughout a mother’s pregnancy, unlike other organs that are nearly fully developed within the first ten weeks. Accordingly, a virus, a toxin or an unknown “insult” can damage the developing brain at any time during gestation, even when the mother feels healthy and is unaware of any illness.

Except for his frail legs, Graham looked physically perfect. His silky brown hair had auburn highlights that glistened in the sun. He had expressive hazel eyes, flawless skin that tanned beautifully and strong chest and shoulder muscles. His facial features and teeth were perfect. He never had a cavity or needed braces. But, like other children with severe CP, Graham was nonverbal and it was difficult to be certain about his intellectual capacity. Some kids with cerebral palsy have mental retardation and others don’t.

Until an individual learns a communication skill, it may be impossible to know exactly what his or her cognitive ability is. Those of us who have been around people with disabilities assume that the person is “all there” intellectually, even if he or she cannot communicate in a conventional way. In the heartening book and movie My Left Foot, Christy Brown reveals himself to be a remarkable artist and an intellect with an irreverent sense of humor, once his mother discovers that he is communicating quite profoundly with the movements of one foot.

Naturally, Cynthia and I wondered about Graham’s mental capacity over the course of his life. Early on, according to the pediatrician’s growth charts, his brain was discouragingly small, based on head circumference and, later, MRI scans that showed key brain areas were underdeveloped. But, even as we wondered about his cognitive status, we intuitively sensed that Graham could understand everything we said and treated him accordingly. His eyes were alert and sparkled with understanding, although it was not easy for him to focus steadily on us. There was something in his expressions that radiated both intelligence and kindness.

At some point, however, the term mental retardation began to appear in Graham’s medical records and there was no highly scientific way to prove that the description was wrong. He had spasticity (tight muscles) and athetosis (writhing movements) that made it nearly impossible for him to control his body. It must have been profoundly frustrating for him when he attempted to use a computer switch that was activated by pushing a big red button—and his body simply would not cooperate. In one sense, Cynthia and I didn’t care at all whether or not Graham was “retarded.” We loved him unconditionally just the way he was and couldn’t have loved him any more had he woken up one day, somersaulted out of bed, recited one of Hamlet’s soliloquies and announced a cure for cancer.

The way we saw it, Graham was perfect, exactly as he was.

Until recently, I never gave much thought to how our brains process emotions. In Graham’s case, I just knew that we loved to hug our son and that he loved to be hugged.

Not long ago, however, I stumbled upon the fascinating work of scientists at Johns Hopkins University called neurobiologists. The researchers were able to describe in detail the science behind our tactile sense, the tangible sensations that we receive from touching things in our environment. Nerves in the skin constantly convey information to the brain about what’s happening on the surface of the body, including nuances of perception like pressure, motion, temperature and vibration. But, it turns out that humans also have a second, discrete sensory system for feeling and distinguishing emotional touch. That system even has its own nerve fibers called C tactile fibers and its own place in the brain where the signals are received, the posterior insula. So the distinct pleasure that humans feel during hugging and caressing apparently has a biological basis. The scientists have shown that emotional touch is crucial for normal development in babies, and many hospital neonatal units today have volunteer “huggers” for traumatized newborns.

It sounds as if the researchers are saying that love can quite literally be felt. And it is entirely possible that emotional touch remains necessary for psychological well-being throughout life. When Graham came along, Cynthia and I had never heard of C tactile fibers nor the posterior insula, but we instinctively used emotional touch just about every moment we were with our son. To stroke him and hug him came to us as naturally as breathing. Some of the time, we were able to interpret Graham’s mood or energy level through physical contact. In the car, for example, Graham was rarely out of touch with the parent driving next to him. When he and I drove somewhere, my right hand and his left were communicating. Certain squeezes conveyed excitement and others meant, “Dad, I’m tired of being stuck in this damned seat! Get me the heck outta here!” At times Graham was also able to use his voice to express how he felt, using some lively vocalizations that did not quite form actual words.

When Cynthia and I pushed Graham in his stroller on walks, we were in constant touch with him, stroking his hair, rubbing...

Produkt-Details

• Erscheint lt. Verlag: 25.5.2021
• Vorwort: Judge Mark L. Wolf
• Zusatzinfo: Photos of Graham, Camp Jabberwocky and campers
• Sprache: englisch
• Themenwelt: Literatur ► Biografien / Erfahrungsberichte
• Themenwelt: Sachbuch/Ratgeber ► Gesundheit / Leben / Psychologie
• ISBN-10: 1-64146-630-8 / 1641466308
• ISBN-13: 978-1-64146-630-1 / 9781641466301