This article appeared in the
News Tribune, Waltham, MA
on Jan. 20, 2004
Photo
by staff photographer Dave Rains
Passion amid pain
By Josh Mrozinski / Tribune Correspondent
Tuesday, January 20, 2004
WALTHAM -- Noel Bernhardt, or Lavender Flowers Bernhardt -- her pen name and how she prefers to be known -- sleeps soundly in her queen-sized bed beneath dark lavender covers. A cross from which she draws strength and hope hangs above her on the lightly lavender-colored wall.
She has two very painful diseases -- Fibromyalgia and Rheumatoid Arthritis -- that often force her to use a wheelchair. After a day of battling depression caused by the chronic diseases, she is exhausted.
Nightmares of a woman's rape by a Civil War soldier awaken her. After putting on black slippers, she hurries to her lavender-colored office just a few steps away. She turns on her Samsung computer, looks up at her spirit guide -- the White Wolf -- and starts writing. Much of what she writes comes from her dreams.
She must type quickly because her ideas often disappear. Poor memory, another painful reminder of her mortality, began in 1995 after she struck her head on a sewer drain while doing laundry in the basement.
Despite her debilitating illnesses, Bernhardt has written "Passion Taylor's World." Her book is about Passion Taylor, a woman from the mid-19th century who walks a path of despair until she falls in love with a kind, gentle, man.
Bernhardt is one of the estimated 3 to 6 million Americans living with Fibromyalgia, and she is one of the 2.1 million Americans living with Rheumatoid Arthritis, according to the National Institutes of Health. Both diseases can cripple a person.
Rheumatoid Arthritis, which primarily causes terrible swelling in joints, also can leave a person with no appetite, a high fever, no energy, anemia and lumps. The disease, which forces the immune system to attack healthy joint tissue, mostly affects women. About 1.5 million women have Rheumatoid Arthritis, compared with 600,000 men.
The Fibromyalgia worsens Bernhardt's misery by causing severe pain and fatigue. The cause for this disease, just as it is for Rheumatoid Arthritis, is unknown. Both diseases make it nearly impossible for Bernhardt to do tasks that many writers, let alone anyone, take for granted. Bernhardt said that she isn't able to type when her fingers curl up into a tight ball because of the arthritis.
To overcome this, Bernhardt sometimes hits the keys one-by-one with a pen clenched between her teeth. She also uses voice recognition software that unreliably writes what she speaks onto her computer screen.
Bernhardt said when she does research she often prints out the same pages repeatedly because she forgets that she had already printed them. She said she sometimes spends hours figuring out the contents of the files saved on her computer. She often relies on her husband of 26 years, Dennis, for help.
Despite the chronic pain and fatigue, Bernhardt finished her book in just about four years. She thinks that if she can write a book, then anyone can.
"I really enjoy writing, sometimes it's frustrating," Bernhardt said. "There's a lot of hard stuff that I had to overcome."
Bernhardt, who is part Native American, said she first started to write parts of the book after her 1995 head injury. She said her unwavering spirituality, derived from her faith in Christianity and Native American shamanism, triggered the writing. That is also when she started to have the dreams from which she has drawn material for her book.
It wasn't until 1999 that the nascent book took its current form, Bernhardt said. After finishing the book, unable to afford a literary agent, she searched for an inexpensive publisher. She found Publish America, a company based in Frederick, Md., that asks writers to promote their book. Writers also pay a fee to have their book published by Publish America. (Note: The underlined sentence is an incorrect statement. Writers do not have to pay to get their books published., Lavender)
Months later, Bernhardt hollered in joy when she found that Publish America was going to publish her book. She said she didn't think anyone would publish her book because it was her first one. Prior to the book, she had only written a few poems.
She started crying. Her husband, sitting downstairs, thought that Bernhardt had seen a mouse. Bernhardt started calling her friends and family, telling them that her book was going to be published.
"I was running around the neighborhood saying, 'I'm published, I'm published,'" Bernhardt said. "It's still hard to believe that I'm published."
Bernhardt said she plans to extend her first book's story into a series. The next book will about Passion Taylor's daughter, Susannah. Why is she turning the first book into a series? Because, she said, Passion's family will not leave her alone.
"I can't get rid of the family," Bernhardt said. "They're so very precious to me now."
She said although she plans to do things a bit differently -- adding more dialogue and narration and making chapters longer -- she still will put some of her life into the next book as she did in the first book. Bernhardt said placing her life into "Passion Taylor's World" helps her cope with emotional pain. Writing is her therapy through which she can openly express feelings of anger and sadness.
"It's (writing) therapy, my therapy," Bernhardt said. "When you're writing, you do become the characters."
