Bettendorf author offers ways to cope with Fetal Alcohol Syndrome
Stephen Neafcy spent 43 years of his life thinking he was a loser.
He dropped out of high school because he could barely understand a thing he learned. He ended up in trouble with the law because he would steal things that caught his fancy. Inner peace was impossible to find.
Then, in 1996, Neafcy’s sister took him to the Fetal Alcohol Syndrome Clinic in Seattle, where a doctor diagnosed him with Fetal Alcohol Spectrum Disorder, or FASD. Neafcy had brain damage. Finally, in middle age, he had an explanation as to why his life had been a living hell for so long.
“I was born drunk,” said Neafcy, a Bettendorf resident who recently wrote a book on FASD and how to live with it. “I never knew what I was doing. I couldn’t remember anything. It was just like being drunk, when you forget where your keys are.”
His book, “The Long Way to Simple,” offers a lighthearted look at what it’s like living with FASD. The breezy read provides practical advice on living with the disorder or taking care of someone who has it.
“As FASDers, we always take the long way to get to the simplest thing,” he said. “My whole thing is that I wanted to offer hope.”
And he has. The book is receiving rave reviews on Amazon.com, but even before he sat down to write it, he so impressed Barbara Neafcy with his knowledge of the disorder and coping skills that she became his wife.
She met her husband while on a computer listserv called FASLink. FASLink offers those afflicted with or affected by FASD a place to share stories and information. Barbara, who lived in Evanston, Ill., at the time, joined the listserv after a school therapist specializing in working with brain-damaged children suggested her daughter may have FASD, a suspicion a doctor later confirmed.
“I said, ‘Oh, this guy is so cool!’ We fell in love online,” Barbara said. “The relationship with him was so appealing because he had the maturity to deal with (FASD). His heart of gold radiated across the computer.”
In his book, Neafcy offers a four-part daily regimen for peace: faith, medication, meditation and music.
Neafcy said he never embraced religion as a child growing up Catholic, but he later found God while attending a nondenominational church with his first wife. “I remember at a very early age not liking church because the priest yelled a lot, saying, ‘You’re a sinner,’ and all of that. Then I met a pastor who could make a biblical story out of a couple fighting about how a roll of toilet paper should hang.”
He says Jesus is his co-pilot and helps him decipher right from wrong. He also keeps himself centered with the music, meditation and medication.
“When I listen to music, I go into a cocoon,” he said. “I remember listening to Simon and Garfunkel’s ‘I Am a Rock’ and thinking, ‘I feel like that.’ When they would sing it, it was like I was saying it and it was venting for me.”
The medication, he said, “keeps me at a level where I can pick up things that I need, like learning about Jesus, hearing what’s on television and listening to my wife.”
Sometimes, Barbara said, she has to give her husband a reality check and remind him that his condition occasionally clouds his thinking. “But since I’ve written the book, I just tell her, ‘You know you’re talking to an author,’ ” he joked.
As for his mother, she died shortly before he was diagnosed. He holds no resentment.
“Back in the 1950s, nobody knew what alcohol would do to you if you were pregnant,” he said. “And everyone needs to know what it does. There are still doctors now who tell pregnant women, ‘Don’t worry, go ahead and have one glass of wine a day.’ ”
David Heitz can be contacted at (563) 383-2202 or dheitz@qctimes.com.