Thursday September 08, 2016
When readers open South Burlington resident Dane Bacon’s novel Son of the Right Hand, they open themselves to Cameron’s world— a story of a determined young man in Ancient Ireland who faces adversity in a quest to fulfill a lifelong dream. Every battle, every challenge brings readers closer to the protagonist.
What they might not realize is that they also become closer to a real Queen City Park neighbor and the author’s source of inspiration: Benjamin, Bacon’s first-born son. Ben was diagnosed with Cerebral Palsy a few months after his birth.
Cerebral Palsy, also known as CP, refers to a group of neurological disorders that are diagnosed in infancy or early childhood and permanently affect body movement, muscle coordination, reflex, posture, and balance. The Centers for Disease Control and Prevention estimates that an average of one in 323 children in the United States have Cerebral Palsy; it is marked as the most common motor disability in childhood. CP is a non-progressive disorder, which means it never worsens. Even though there is no cure, lifelong treatment, which could include therapy, medication, and surgery in some cases, can improve the quality of life of those living with the condition.
For 34 years, Ben has experienced general weakness on his right side and suffers from adversive seizures, which he controls with medication. Due to the severity of the weakness, Bacon explained that there are many people involved with Ben’s care. Ben lives with Bacon and Ben’s mother, Diane, his primary caregiver.
“Her love and dedication to Ben is just a beautiful thing,” Bacon said.
Ben’s grandfather, who lives next door, as well as his younger brother, Scott, who lives with his wife and son in South Burlington, have both been stabilizing forces in his life. Ben also works a few hours a week in the community thanks to the help of his personal care attendant.
“He can speak and can walk on his own and functions well, although he struggles some with anxiety in public places,” Bacon said.
Verbal communication, in particular, can be a daunting task, just one of many that Ben and others with CP encounter on their journey through life.
Through the power of writing, Bacon realized it was a journey he wouldn’t have to face alone.
“In the early 1990’s, I read an article in National Geographic about an ancient burial tomb being unearthed in Ireland and was fascinated to read about who they thought the nobleman may have been and the great embellishment that was involved in his burial,” he said. “Ancient Irish leaders were chosen with great care – and their Kings or, Ri [in Gaelic], were strong men free of physical infirmities of any kind.”
“Thinking about and trying to envision what it must have been like for someone with a grave disability to have lived back then – began an idea of writing a novel about someone who lived at that point in history that was like my son. That is what started the storyline, and many years later, it became a finished work.”
For 20 years, while Bacon came to Ben’s aid at home, he spent that time cultivating the character of Cameron, Cameron’s mission, and the help he would receive along the way.
“The protagonist in the story is modeled after my son Ben with all of his challenges and need for help from others,” he explained. “The Irish lead character in the story is befriended by a young woman and her huge drover dog (for those Rottweiler lovers out there) and an outcast who lives in the deep forest and is something of a legend to his people. These three go on an amazing journey to help fulfill the vision of great things that have been revealed to this amazing young man.”
“Ben’s physical appearance and mannerism, strengths and weaknesses were always in my mind’s eye,” he added. “The character of Cameron in the story is a direct manifestation of Ben on paper.”
When it came to officially naming the written work, that, too, was directly attributed to Ben: the name Ben translates to “son of the right hand.”
“It always seemed somewhat prophetic to me – as it turned out that Ben would not be able to use his right hand because of his CP. The story has a strong thread of good versus evil – those two opposing powers at play as the story progresses.”
Bacon has introduced the concept of the story and artwork to Ben, and although it is difficult to know if he grasps the idea. “I think he is happy for me,” Bacon said, “That I seem to be excited to show him the finished novel.”
If the novel gains enough public interest, there may be an opportunity to channel a portion of funding toward research. For now, it serves a greater role of spreading awareness of CP and the needs of parents like Bacon and Diane who care for developmentally-challenged adult children.
“He has a big heart, and he inspires me to realize that the challenges I have to face in my life seem small compared to what he has to deal with each and every day.”
Son of the Right Hand is currently available on Amazon Books as well as at the South Burlington Community Library.
SOURCE: Miranda Jonswold, Correspondent