At the end of a pastoral road not far from a major highway, Ed LeBlanc's house overlooks the river, an oasis of a home with white walls throughout and tasteful furniture and accent pieces carefully placed in the open, airy rooms.
LeBlanc originally built the home in 1973 as a summer cottage for his growing family, back when he had the energy of three people and was making his way up a ladder of education that would lead from classroom teacher to school superintendent.
Now the home, renovated and modernized, comforts the retired superintendent as he faces the most challenging job of his life.
LeBlanc, 59, has amyotrophic lateral sclerosis (ALS), a hammer of a disease that turns the body's nerves to jelly while the muscles become stiff and useless.
There is no cure for ALS, more commonly known as Lou Gehrig's disease; death from pneumonia or other respiratory failure usually comes within three to five years once the disease begins moving through the body.
In a cruel irony, the mind and spirit remain alert as the body hardens into a shell of withered muscles.
LeBlanc, who served as superintendent for the Maranacook School District in Readfield from 1991 to 1997 before taking over as head of the Waterville schools, can no longer talk except to say, "Yes," or "No" to simple questions.
A small computer called a LightWRITER talks for him. He types what he wants to say, pushes a key, and a programmed voice speaks.
"I first noticed it with my speech," he said of how the illness started. "I would go to say something and it wouldn't come out right."
No one else, including his wife, Sharon, seemed to notice anything unusual about his voice, but LeBlanc did. As the months went by, there were times when he couldn't get all the way through a school board meeting and had to ask an assistant to finish the agenda.
A man who never really walked through his schools, going instead at kind of a trot, LeBlanc also started tripping easily; a couple of times he fell down for no apparent reason.
"I had no idea what was wrong," he said. "But I certainly thought it was something temporary."
He consulted doctors who screened him for lead poisoning and Lyme disease, two illnesses that can affect muscle function. All tests were negative.
A neurologist in central Maine and a specialist in Boston ultimately gave him the diagnosis in February of 2000, a year after the symptoms appeared.
"I wasn't scared by the news," he said. "I knew very little about ALS, probably too little to be scared. I knew that it's a brain malfunction."
More than anything, he was relieved to know what was wrong. LeBlanc is a take-charge person who likes knowing what is going on and finding a solution.
His attitude was, "Tell me what I have, and let's begin dealing with it."
GROWING UP
LeBlanc grew up in Saco, one of five children in a working-class Franco-American family. His father was a fireman.
"I never thought about going to college when I was growing up," he said. "I planned to work in the mills in Biddeford." The textile mills were the mainstay of the local economy, the key to steady jobs and stability for thousands of French families who came there in the late 1880s and after.
School was almost a joke to LeBlanc, who figured he was destined for the mills. He readily admits not being a model student. He was the kind of kid who sat in the back row making wisecracks and arch comments during class.
During his senior year, however, he decided to go onto school, to nearby Gorham State Teachers College. He was the first person in his family to attend college, and while his parents were proud, they weren't able to provide much money for LeBlanc's education. What he earned at Tobie's Restaurant in the summer helped pay his way.
He became a middle school science teacher, a job he loved. He found that he loved kids, too, so much that he moved into high school guidance in Topsfield, Mass. Five years later he was a department chairman there, overseeing industrial arts and business and vocational education.
Along the way, he earned a master's degree from Northeastern University in Boston and several credits beyond the master's level.
The LeBlancs returned to Maine in 1978, when he took a job as principal of the high school in Wells-Ogunquit. He then moved up to assistant superintendent for SAD 47 in Oakland. At the age of 49, he took on his first superintendency, for the Maranacook Community School District including the towns of Wayne, Manchester, Mt. Vernon and Readfield.
He was an energetic advocate for kids and schools, dashing from one assignment to another, always full of ideas, always brimming with humor and personality, always talking.
LIFE TODAY
Today LeBlanc no longer runs from place to place. He uses a walker with three wheels as he moves around his home. The floors are burnished hardwood and inlaid marble tile. There are no scatter rugs or objects that might cause him to trip, for when he goes down, it's like a sandbag tipping over. He goes down hard and getting up is difficult.
"My disease is progressing quite slowly," LeBlanc said. "It began with my speech and has moved into my legs. And I can feel a difference in the muscles around my chest and back."
He knows he'll eventually be in a wheelchair, but not until it's absolutely necessary.
"I have an automated scooter," he said. "And I can take that outside. We also have a van with a rack that the scooter fits on, so Sharon and I can go places."
He can no longer hold a pencil or pen well enough to write by hand. While swallowing is not a real problem, he is more comfortable with soft foods.
The limitless energy that once took him through long days is still high, but it must be rationed now. Fatigue is a side effect of ALS, a side effect that didn't bother LeBlanc in the beginning, but tends to catch up with him more often as his disease progresses. If he goes outside on the scooter to do some light yardwork or overtaxes his muscles too much with the walker, he tires. If he works on the LightWRITER too intensely or spends long periods on his larger computer using the Internet, he tires.
He's learned to pace himself, a new experience for him.
His wife still teaches, in the Biddeford School System where she got a job after LeBlanc took early retirement from Waterville in January of 2001. The couple moved to their renovated summer home near Saco.
Sharon LeBlanc wants to teach four or five more years, until she reaches full retirement age.
"If I stayed home, we'd both go nuts," she said. "And frankly, we need the insurance coverage through my job right now."
LeBlanc receives retirement and medical benefits through the Maine State Employees Association, including a drug plan under which a medical prescription never costs more than $20. He also receives disability benefits through Social Security. But insurance won't pay for everything - the scooter, for example - and the LeBlancs both know the medical costs will mount up.
They made a deal that she would keep working. Otherwise the ALS would consume two lives instead of one.
HIGH SCHOOL SWEETHEARTS
The LeBlancs met in high school, at Thornton Academy, and began dating when they were 16. They attended the same college and married in 1965, right after graduation.
His illness has made no difference in their marriage. "She contributes a lot to me," he said.
They get up together and once she leaves for school, LeBlanc cleans the kitchen with the same determination and concentration he once used in figuring out bus schedules, dealing with students, and overseeing school systems with five or six schools.
"It's not difficult," he said of spending his days in the house alone. "I watch television only at night. I spend a lot of time on the computer. I save up things to tell Sharon when she comes home."
He has time now to enjoy the nature surrounding his house. In the middle of a sentence, he suddenly said, "A squirrel just ran down that tree. Did you see that?" A number of bird feeders hang over the deck outside the house.
LeBlanc loves listening to songs from the 1950s and '60s. He has a set of five compact discs that play "malt shop" tunes. The sounds of "Mr. Sandman," "Who's Sorry Now," and "Teen Angel" fill the house.
The LeBlancs used to dance to those songs, but he doesn't listen to them for nostalgic reasons. He just likes them.
"I am not a person who looks back," he said as the sentimental songs of a past era played in the background. Yet, there are things he misses.
"I miss responsibility. I miss my job, because I loved kids. I see things on television about children, and I'd like to help in some way."
Most of all, he said, he misses speaking to other people as he used to, with easy back-and-forth conversation. Communication was the key to his job.
When his condition worsens, the couple intend to line up home health care services for him. For now he has a special alert button he can push to summon one of their sons or other help within five minutes if anything should happen.
Their two sons live nearby. One is a marine biologist, the other a farmer. A daughter lives in New Hampshire. Sharon LeBlanc's mother lives almost next door.
"I don't think my illness has made any difference with Sharon and me," he said. They've been together long enough to know by a glance or gesture what the other is thinking or trying to say. He respects her abilities as an educator and has encouraged her to work.
There are few things to look back on with regret.
"Ed and I have been together for 37 years," Sharon LeBlanc said. "And we've lived the good life. I don't mean in terms of money, but we raised three fine children, we had this place on the river, we had jobs we loved."
MORAL SUPPORT
Once a month the two drive 80 miles each way to attend a support group in Augusta for people with ALS. "I've learned a great deal there," LeBlanc said, then adds, "But so many die so quickly. Five people in our group have died since last January."
In fact, of the original members, LeBlanc is the only one still living.
The support group invites outside speakers in to talk about the illness and how to cope. It's not a place to share self-pity; it's an opportunity to learn new things - and that appeals to LeBlanc. There are small tips, such as the beauty of Velcro when the fingers can no longer button shirts or tie shoes. Members give each other information about adaptive equipment, ways to stay comfortable, what might make life easier, and how to recognize a new symptom and what to do about it.
Most of all the members want to know about the latest research.
THE CAUSE
No one knows what triggers ALS or related neurological diseases. And while there is no cure right now, there is a fairly new drug, Rilutek, that seems to slow the progress of the disease.
LeBlanc sees a local neurologist regularly, and every three months he and his wife go to Boston where he is both a patient and part of a research group. The research included a questionnaire about his work history, especially any prolonged exposure to factory or farm work. He's also been asked about any environmental hazards he might have encountered in other ways.
On his questionnaire he wrote, "When I worked at my last job (in the Waterville superintendent's office), there were several toxins in the building. The roof was leaking and there were molds upstairs and on many walls. It was an old building and there was lead paint around the whole building."
The building also emitted foul odors, especially when the sewer backed up in the basement, he told his doctors.
"In the basement also, there were classes. Every month a person came to spray the basement because of bugs. I don't recall the name of the spray, but it was strong," he wrote.
He also wrote of always having tense muscles for as long as he could remember. The muscles weren't painful, he said, and never interfered with his life. But when he reminded himself to relax, he could notice a difference, he said. "I would feel much better," he said.
His daily medications include the Rilutek and Paxil, an antidepressant that helps stabilize the loss of emotion that ALS can bring. People with the disease often find they cannot stop laughing if something strikes them funny. If they are touched by something, weeping can become uncontrollable. It's all part of the muscle-wasting syndrome.
"That doesn't happen to me as often as it used to," LeBlanc said of the loss of emotion. Yet when he laughs, the sound seems to go on and on.
He also takes large doses of vitamins C and E, Tylenol for muscle stiffness, and small amounts of creatine, a protein used to build muscle. He wears a transdermal patch to control excess saliva.
The illness has taught him as much as it's taken away, he said - "Patience, acceptance, an appreciation of my surroundings and the people in my life," he said, things he either used to take for granted or were not a natural part of his temperament.
"I have to accept this. What else can I do?"
And there's much to look forward to. "On weekends, friends and family come over and the grandchildren. There are four grandchildren. I look forward to watching them grow."
When he retired from the Waterville school system after being there four years, the state Legislature honored him with a proclamation. "For years of outstanding service to the children of Maine," it reads in part. A new kindergarten wing at one of the schools in Waterville is named for him.
He's been back to Maranacook once since he left there in 1997. A new middle school wing was under construction last spring and he went in for a tour, a last look around the school he loved so much, the school he once ran.
He keeps up on his former school systems to some extent, but admits that his real job now is keeping up with his illness.
Death does not frighten him, he said, mainly because of his strong Catholic faith. And a prolonged illness gives him time to put everything in order and say the proper good-byes, a gift not given to everyone, he and Sharon agree.
"Our retirement hasn't turned out the way we'd planned, that's true," he said. "I don't think I'm going to die anytime soon, but who knows? My brain helps me. And I believe in staying positive."
©Capital Weekly 2002