DARRINGTON – On Valentine’s Day 2004, Nathan Herman’s chances of finding someone to love didn’t look good.
But this morning, his fiance planned to make him a breakfast of pancakes, sausage and frozen cappuccinos.
A year ago, at age 20 and weighing just 30 pounds, Herman was near death from complications of a spinal cord defect. Then he met Ali Neenan in a Web site chat room for the punk rock band Green Day. Neenan has her own problems dealing with depression.
Both isolated, they formed a bond of trust and shared their deepest thoughts.
Love sparked like a match. Eventually, Herman, an artist, drew her portrait. He used only his right thumb, over which he has full control.
“I never felt connected like this to another human being,” Neenan said. Herman feels the same way.
“She is my muse, inspiring me both artistically and in everyday life,” he said. “She’s literally my other half.”
Defiant in Darrington
Herman lashed out at doctors when he turned 13. Weary from 12 years of treatment at Children’s Hospital and Regional Medical Center in Seattle, he said he wasn’t going back. He was tired of medical predictions about his imminent death.
He suffers from spinal muscular atrophy type 2, a spinal cord disease that affects muscles for crawling, walking, head and neck control and swallowing. Diagnosed at 1 year old, doctors gave him just three months to live.
|
The family moved to Darrington when he was 9. He attended Darrington High School with the help of an aide, and took online courses through Skagit Valley College.
“It really wasn’t any different for me, because I had nothing to compare it to,” Herman said about growing up. “I have never been able to walk.”
Bedridden the past four years, Herman had slipped to 30 pounds by last Valentine’s Day. At his lowest point, the 5-foot-2-inch Herman withered to the size of a 3-year-old.
Hospice workers hovered.
A continent away
Neenan, 19, began experiencing problems with depression when she was in a Massachusetts middle school.
|
Purchase the art To purchase artwork by Nathan Herman, go to http://icerazer.deviantart.com/store |
“I was always painfully shy, to the point of withdrawal,” she said.
She has a sister with Williams syndrome, a rare genetic condition that causes developmental problems, and a brother who has nonverbal autism. So she knew about people with special needs.
“Sometimes, when I was really young, I felt guilty about being born normal,” Neenan said. “I suffered with major depression.”
She became a “cutter,” someone who cuts themselves when feeling depression, stress, guilt or anger. “There were times that I no longer wanted to live,” she said.
Green Day’s music kept her going. Her favorite was the song “Basket Case,” with the lyrics:
“Sometimes I give myself the creeps,
“Sometimes my mind plays tricks on me,
“It all keeps adding up,
“I think I’m cracking up…”
Green Day, new day
Bedridden, Herman’s link to the world outside of Darrington was his computer. A fanatic Green Day fan, he started exchanging messages with Neenan in a chat room.
She began feeling comfortable enough to share her innermost feelings with Herman. “She is quiet around new people,” he said. “She isn’t the go-out-clubbing type of girl.”
It took Herman a long time to write his messages to Neenan, laboriously forming words, letter by letter, using his thumb. Neenan was patient.
Right up front, he told her he was disabled, but she paid little attention to that. Their chatter became a courtship. She decided to take a chance and meet Herman.
“My parents and friends were shocked when I announced that I was going to Washington,” she said. “I knew it was right, and only purchased a one-way ticket.”
Neenan said she can’t pinpoint what drew her to Herman, but he is good-looking, she said with a smile. He has gained 40 pounds since she arrived in May.
Neenan said she is happier than at any other point in her life.
“She is my first girlfriend,” Herman said. “It’s weird, to go from nothing for 21 years, to poof, a perfect match.”
Avenue of expression
Herman, with the use of only one thumb for drawing, wiggles his digit over a touch pad that detects heat and pressure to move the computer cursor.
By thumb, he pours his artistic soul into passionate pictures, some as colorful as a clown’s costume, some stark black and white.
His dream job is to design comic book covers. He admires Stan Lee, the creator of Spider-Man and whom he describes as the father of American superhero comics. He also admires Japanese anime artist Shinichiro Watanabe.
Herman’s digital artwork ranges from gothic comics to black-and-white depictions of Neenan and himself. His portrayal of eyes with one black swoop, done with Photoshop, a computer graphic arts program, speaks volumes. He sells his work online.
“I should make two things clear,” he said. “I’m not big on the pity thing. And I’m not dying anymore.”
Purpose in their lives
Neenan takes care of Herman, getting him his meals and lifting him into his wheelchair to go out for the afternoon. Together around the clock, she says they never get tired of one another’s company.
“Taking care of Nathan isn’t something I really think about,” she says. “I never see him as handicapped. It’s weird. Everything just comes as second nature.”
Herman’s mother, Tawnya Nettles, 43, drove them to Everett before Christmas to see Green Day live in concert. “He is so responsible, like an old man,” Nettles said. “He knows how to do things. Nothing discourages him.”
Neenan said she has found her place in life with Herman. They live in a back bedroom decorated with posters of the Beatles, Nirvana, Jimi Hendrix and Smashing Pumpkins, at his mother’s Darrington home across the street from a tavern.
To help Herman use his laptop, she places both hands on his cheeks to reposition his head and lifts his neck off a rolled-up pair of white socks so his eyes face slightly toward the ceiling.
When he requests more help, she swings his limp arm across his body to cup his right palm over his clenched left hand, which is perched in front of the keyboard.
With green streaks in her dark tresses, she strokes Herman’s hair with loving hands.
“It’s been close to a year since I’ve cut myself,” she said. “I have goals, hopes and dreams, and a fabulous person to share them with.”
Saving lives
“My recovery since she has gotten here has been nothing less than miraculous,” Herman said. “Most importantly, I am happy, truly happy, for the first time in my life.
“I was also kicked off hospice for being far too healthy,” he said.
Herman proposed to Neenan at Christmas.
“Ali Neenan, munchkin of my life, will you marry me?” he asked.
“Yes,” she said immediately.
They plan to marry July 30 in Salem, Mass. Neenan said her family needs financial help to secure a van with a ramp for getting Herman to the church on time.
In his bed, Herman demonstrates how his thumb becomes a brush. As he draws arms on a comic figure, he is unable to move his head or arm when a tear appears. The love of his life, tucked behind him, dries his wet upper cheek.
“We saved each other,” she said.
Herald writer Kristi O’Harran: 425-339-3451 or oharran@heraldnet.com.
Talk to us
> Give us your news tips.
> Send us a letter to the editor.
> More Herald contact information.
