ALS patient finds life in creation of fantasy
BY TALI ISRAELI
Staff Writer

Writing a fantasy novel is what has kept ALS patient Jay Gordon’s spirit, wit and intellect alive. Gordon, 61, of Marlboro, was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, in January 2001.

ALS is a fatal neuromuscular disease that attacks the motor neurons and eventually makes walking, speaking and gesturing impossible. A patient with the disease most likely will become paralyzed, but the majority of ALS patients’ minds are unaffected by the disease.

Gordon and his wife, Susan, have lived in Marlboro for 33 years. His daughter, Stacy Roger-Gordon, son-in-law, Patrick, and their three children live with them. Gordon’s daughter, Karen Scott, lives in Virginia with her husband, Robert, and their two children.

The Gordon family organized the JM Gordon Foundation for ALS research after Jay was diagnosed with the disease. The mission of the foundation is to develop a clinical database and registry for individuals who suffer from the disease. According to Robert, the foundation is dedicated to gathering a database of patients’ symptoms and histories, which will redefine the way ALS research and funding is managed in the United States.

Although Gordon has lost the ability to walk and speak since his illness surfaced, his spirit has remained intact. Stacy said her parents have not allowed the disease to take over their lives.

Susan said her husband’s attitude and how he has handled his illness is what amazes her; she believes that attitude is what has kept him alive. He is very positive and he smiles and laughs every day, she said.

“This is an up, alive, functioning, living household,” she added.

Stacy said her father is up for anything, whether it be going to the theater or just going outside.

“It can be a good day or a bad day but he wants to go out,” she said.

Prior to his diagnosis, Jay and Robert had talked about writing an epic adventure that would combine elements of fantasy, mystery, horror and science-fiction. When Gordon’s illness took a turn for the worse and he was bound to a wheelchair, Robert said he knew it was time to start writing.

Together, Jay and Robert wrote the first book of a three-book series. “The Hickory Staff, The Eldarn Sequence Book 1” was published in August and is on bookshelves throughout the world. However, the adventure of Steven Taylor and Mark Jenkins has not been published in the United States yet.

“The Hickory Staff” centers around an assistant manager at a Colorado bank who discovers a sealed 135-year-old safe deposit box. Upon opening the box, Steven Taylor finds a portal to the mysterious world of Eldarn. Steven and his roommate, Mark Jenkins, find that Eldarn is filled with magic and mysticism but is oppressed by Nerak, a monstrous dictator with a lust for power. The two come to realize that the fate of Eldarn hangs on their heads and their ability to find a way home.

“ ‘The Hickory Staff’ gave [Gordon] something tangible and fresh to grab hold of, something about which he could allow his imagination to run, even while his body gave way beneath him,” Robert said. “For 18 months we wrote, edited, bickered and wrote some more. All the while Jay spiraled physically. Intellectually he was, as he remains today, as sharp and as witty as ever. [The book] is the blessing that has allowed him to work so long on this project but also the curse that accompanies his physical degeneration.”

By the time the contract to publish the book was in its final stages, Gordon had already been in a coma for two days and remained in that state for weeks.

“We expected to lose him that month as we have on several occasions since,” Robert said.

If Gordon had not recovered, he would have never known about the book contract and worse, would not have seen the Eldarn story through to the end, Robert said.

“When he finally came around, the first thing he said to me from his hospital bed was, ‘Tell me what’s happening with Steven and Mark.’ Defying the odds and his doctors’ expectations, Jay is still with us,” Robert said. “He has lived to see his fifth grandchild’s birth and has continued to share in telling the story of Steven Taylor and Mark Jenkins’ adventures in Eldarn.”