Sunday, October 16, 2005
By RAY ROUTHIER, Portland Press Herald Writer
Copyright © 2005 Blethen Maine Newspapers Inc.

"I know people who have had ALS for years and are barely affected. I have, I have decided, ALS on steroids."

- Darcy Wakefield, using a vision-operated computer to discuss her illness.

In the two years since being diagnosed with ALS, a terminal illness also known as Lou Gehrig's disease, the 35-year-old writer and mother has lost the ability to talk, to walk, to type on a computer keyboard and to turn over in bed.

She's also spent most of those two years promoting ALS awareness with astounding tenacity.

She's written essays on her struggles for public radio, both in Maine and nationally, with her sister, Betsy, reading her written words on air lately.

She's also written a book called "I Remember Running: The Year I Got Everything I Ever Wanted - and ALS."

The book comes out this month, and Wakefield is planning to promote it by appearing at bookstores and the Portland Public Library, with her sister and some friends doing the readings.

She wrote some of the book when she could still type with her fingers, and dictated some of it when finger typing became too difficult. For a final edit of her work, Wakefield had to use a special vision-operated computer in her Cape Elizabeth home.

That's her best mode of communication now and the way she contributed her thoughts for this story.

'NOT ASTONISHED, JUST REALLY SAD'

"For me, I notice the changes as they start to worsen, so by the time I lose that function, I'm not astonished, just really sad . . . I don't think doctors give people with ALS (a) long or short-term prognosis. It really varies, person to person, but from what I've read , most people with ALS live two to five years after diagnosis. Mid-October will be the second anniversary of my diagnosis."

ALS is an incurable disease that affects nerve cells and leads to a loss of muscle control and, often, total paralysis. No one knows what causes it.

While Wakefield has lost so much of the movement and functions most people take for granted, she's also gained sources of love and joy that many people spend a lifetime seeking.

When Wakefield was diagnosed in October 2003, she decided to put her life on steroids, so to speak.

About a month after her diagnosis, Wakefield bought a home with the love of her life, Steve Stout, a psychiatrist she had met earlier that year.

The two then decided to have a baby. Before meeting Stout, and frustrated by relationships that went nowhere, Wakefield considered methods of becoming a mother without a partner.

So her ALS, and her meeting Stout, sped up her motherhood plans a little.

'I AGONIZED OVER THIS'

"Of course I agonized about bringing a child into the world because of my ALS. But what if I lived 20 years with my diagnosis? I agonized over this a lot, as did Steve, who was also concerned about possibly being a single parent. In the end, I gave my decision over to the universe. I told myself we'd try three times I think, and if I didn't get pregnant, I'd figure that was our answer.

"We got pregnant on our first try."

Samuel Wakefield Stout was born Sept. 12, 2004, while his mother could still walk and talk. Today, Sam is healthy and walking. Wakefield has "sporadic" ALS, meaning heredity is not involved and Sam's chances of getting ALS are about the same as anyone else's.

In her e-mails, her radio essays and her book, Wakefield has a straightforward, simple way of describing how ALS is systematically robbing her of so many of life's simple pleasures: walking, running, stretching, holding a loved one.

She has even written her own obituary; the English instructor couldn't bear the thought that a poorly written obit about her was floating around out there.

So with clarity and brevity, she described her education and her occupation, including the fact that while teaching at Southern Maine Community College she "thoroughly enjoyed her students, colleagues, subject matter, and work setting."

She wrote of herself, "Before getting ALS, she was extremely active, and loved walking, running, hiking, and swimming." She wrote of her love of writing and reading, and that she worked hard at the promotion of ALS awareness and a cure "so that no one else would have to die from this awful disease."

Though she's got the obit written, Wakefield has certainly not given up. She faces every day with zeal, enthusiasm and joy.

"What I find amazing is her ability to make the best out of every day and have a smile on her face every day, even though she is unable to do what she really wants to do, to work, to run," says Stout. "And the fact that she can ask me how my run went, that's a real testimony to her ability to revel in the joy of life, even if it's a joy she can't directly share."

Wakefield continues to write and make appearances to promote ALS awareness, including several bookstore appearances scheduled for this month.

'IT MAKES ME VERY ANGRY'

"I want to make as many people as possible aware of ALS. This, I hope, will lead to a cure faster; I want to keep writing; I want my ALS to slow down or burn out or go away . . . I read that the average person has a 1 in 1,000 chance of getting ALS. That's a lot of people. It makes me very angry that there is not a cure. Really - what if all the money spent on Viagra research had been dedicated to ALS research?"

Wakefield, the oldest of three siblings, grew up in rural North Livermore. She was athletic, loved to run, but was a little too independent for organized sports.

She always loved to write, to use words. But she wasn't what you'd call chatty.

"I can talk your ear off, but Darcy was a good listener," says her sister, Betsy Wakefield. "She always loved words and used them thoughtfully."

Darcy Wakefield spent her last two years of high school at the private Waynflete School in Portland, living with a local family during the week and going back to Livermore on the weekends.

After high school, she went on a quest for higher education and earned a master of fine arts in writing from Emerson College in Boston, a master of arts in American studies from the State University of New York at Buffalo, and a bachelor of arts from Smith College in Northampton, Mass.

At age 33, she was settling into her career, teaching English at Southern Maine Community College in South Portland and doing commentaries for Maine Public Radio.

In May 2003 - just a few months before learning she had ALS - Wakefield and Stout met and fell in love.

Stout saw Wakefield's picture and read about her on an online dating site. Stout, a psychiatrist living in Denver, contacted Wakefield despite her stated preference for people who live in or close to Maine.

They shared a similar sense of humor, a love of the outdoors and professional drive. They exchanged phone calls and e-mails, then decided to meet in Denver the last week of June.

Both say they knew pretty quickly that they had to be with each other.

'HE IS A GREAT COOK, TOO'

"Oh, I just knew. I had a real easy time being with him, it was like I'd known him for years. And what was there not to love? He loved the outdoors, hiking, running. He is cute and funny and smart and interesting. He is a great cook, too - should I stop?"

Around the time Wakefield and Stout got together, Wakefield was training to run in the Beach-to-Beacon road race in Cape Elizabeth. Her right leg started to feel stiff, and her right foot would sometimes go limp after running.

People told Wakefield she had probably pulled a muscle. She went to a physical therapist then an orthopedic surgeon, with no improvement.

Then she went to a friend who was a neurologist, who suspected ALS. He directed her to other doctors in Boston who diagnosed the disease. It was Oct. 14, 2003. Stout was at her side.

"I had it in my heart that we were going to be together," says Stout. "Her diagnosis was tragic, and tragically timed, but it didn't change what we knew we wanted to do."

Neither Wakefield nor anyone in her family knew much about ALS. But then again, neither do scientists.

The national ALS Association states the cause of ALS "is not completely understood" and that there is no cure. The disease seems mostly random.

More than 90 percent of all people with ALS have the "sporadic" variety, meaning that heredity is not involved. But about 5 percent to 10 percent have "familial" ALS, meaning heredity appears to play a role.

The disease kills motor neurons, which leads to loss of muscle control. In the latter stages, patients can become totally paralyzed. Most ALS patients die from respiratory failure, and as Wakefield herself said, most live two to five years after diagnosis.

About 10 percent live 10 years or more, according to the ALS Association.

"Darcy told us in this very straightforward way, and our reaction was mostly disbelief, since ALS was something that really wasn't on any of our radar screens," says Wakefield's sister, Betsy. "ALS has sped things up for her, but the things that were important to her before are important to her now."

Love is one of those things. That Stout could meet Wakefield in June, and be so committed to her by October - committed enough to care for her through her ALS and have a child with her - is almost too much to believe.

But Betsy Wakefield says that Stout and her sister just go together so naturally, so easily, that anyone who knows them both is not astonished.

"My thought is that Darcy is such a spectacular person it makes sense she would attract someone equally wonderful," Betsy Wakefield says.

Wakefield also attracted a core of friends, including people from her reading and cooking groups, who have been by her side through this struggle. Her friends formed a nonprofit group called Girls Kick ALS, specifically to raise money for costs not easily covered by Wakefield's insurance, like a wheelchair ramp, a page-turning device, the cost of house cleaning.

Friends run errands and do the groceries. Wakefield has hired some student nurses and some friends to help provide daily care and the running of her house. Her mother, Nancy Wakefield, lives with her four days a week, cooking and cleaning and helping to care for Sam.

Wakefield's days lately consist of writing, using her eyes to slowly type one letter at a time. When she's tired, she loses eye control and has to stop.

She calls the eye-controlled computer a "pain in the butt that I can't live without" since it's her best means of communication and the way she can continue doing something she's always loved - writing.

She still writes essays that air occasionally on public radio in Maine and nationally, and enjoys the e-mail she gets from people who hear her.

'THAT LETTER MEANT A LOT'

"My favorite letter, however, was one a former student of mine sent MPR after hearing my essay. He'd failed the composition class he'd taken with me, and after hearing my essay, he realized that I knew what I'd been talking about, and now he wished he'd paid better attention in class. That letter meant a lot to me."

Wakefield also spends a lot of time taking "walks."

She can control her motorized wheelchair and take walks through the neighborhood with Sam, who is now 11 months old, while someone else pushes his stroller.

On a recent weekday, she takes a 45-minute stroll through her neighborhood, off Shore Road, and even manages to pass over unpaved roads and up steep hills.

Her friend and former co-worker, Lorraine Glowczak, now works for Wakefield helping her out. On this day, Glowczak pushes Sam's stroller on the walk.

Every once in a while, Wakefield tries to say something and Glowczak stops, positions herself directly in front of Wakefield, studies her mouth and her light blue eyes, and slowly discerns what she's saying.

To anyone meeting Wakefield for the first time, understanding what she's trying to say is extremely difficult.

"I think when you are around someone every day and learn their speech patterns it gets easier," says Glowczak.

Back at her cottage-style home, Wakefield drives herself up a ramp and into the house.

She says she's good at knowing what Sam wants and needs and getting other people to do for him the things she can't - change his diapers, pick him up after a fall.

On this day, Sam does fall and his grandmother scoops up the crying boy and brings him to an immobile Wakefield sitting in her wheelchair.

Wakefield closes her eyes, breathes in and kisses her son on the head softly and slowly, seeming to drink in the moment with her body.

"Now everything's all right," Sam's grandmother tells him, then puts the consoled boy down and lets him run happily away.

'THIS MEANS A LOT TO ME'

"I give new meaning to the phrase stay-at-home mother. Sam and I are home together pretty much every day. What this means is that I am fairly good at knowing what his needs are, so even though I cannot lay him down for a nap or make him lunch, I can ask others to do that. I feed Sam almost all of his bottles; this means a lot to me. I think that almost all my moments with Sam are my favorites.

"I so enjoy being near him."