Byline:Trudi Hahn
© Copyright 2003 Star Tribune. All rights reserved.
Published 06/15/2003

When David Sheets told his wife on May 15 that he had e-mailed his doctor, she understood what he meant.

He had decided it was time to die.

Sheets had friends who enjoyed his huge sense of humor, had a job he felt was useful and had a wife he loved. But he had been living with Lou Gehrig's disease, or ALS (amyotrophic lateral sclerosis), since 1983. Some describe the disease as being buried alive. When the paralysis reached Sheets' lungs within four years, he made the choice to be hooked to a ventilator so he could breathe -- something only about 5 percent of ALS patients do.

Unable to move and communicating only with his eyes, he married, took a job, ran a fantasy football league and started writing the story of his tour in Vietnam.

On May 17, he spelled it out for his wife, Mary Willette-Sheets: He wanted the ventilator turned off in three weeks, on June 8.

Sheets, 53, was born in Indiana and raised in San Diego. He joined the Army in 1967 and served in Vietnam with the 11th Armored Cavalry Regiment. Soon after his tour ended, so did a two-year marriage. He settled in California into a life of women, drugs, partying and school.

Eventually, "the no-direction blues hit me," he told his friend Jeremiah Whitten by e-mail for the October 2001 issue of Minnesota Medicine. "All my friends were low-life druggies. I needed a change."

In 1976, with a degree in business and finance from the University of California, Irvine, he moved to Minneapolis. He became like a son to his aunt, Bertha Ghimenti of St. Paul. He often played Santa Claus for her grandchildren.

In 1981, Sheets found his "dream job" as a salesman for a printing shop, he told Whitten.

The next year, he noticed his muscles weren't working the way they should. ALS was diagnosed in 1983.

No cure

Every week, ALS is diagnosed in about two Minnesotans, and every week about two die from it, said Lisa Kronk, a patient-services nurse with the Minnesota chapter of the ALS Association. Nationally, the number of cases stays steady at about 30,000.

The cause of ALS is unknown, and there is no known cure, Kronk said.

Unlike people with spinal-cord injuries, ALS patients like David can feel touch, heat and cold. He could see and hear, but couldn't move or speak. He communicated by looking at a clear acrylic board where letters and numbers were grouped by fours. A glance up or down plus left or right showed which letter he meant. He used an eyebrow muscle to type on an adapted computer.

"He was gentle, had a good spirit, great sense of humor; self-deprecating," Kronk said.

He did well on the ventilator, thanks to in-home hospice care. As a fantasy-league commissioner, he responded to flurries of e-mails.

One of his caregivers told her roommate, Mary Willette, what a neat guy he was. Mary asked permission to meet Sheets and to bring her small Shih Tzu dog, Molly.

David and Mary fell in love.

"His unbelievable sense of humor" is what attracted her, said Mary, a full-time master sergeant in the Air National Guard. "He'd crack me up every day."

He loved bluegrass and took her -- and a nurse and an aide -- to an Alison Krauss concert. He'd go to Mary's house for dinner. And he liked to buy her jewelry, she said.

Sheets proposed in August 1996, and they were married that October. They bought a handicapped-accessible house in Champlin, where Sheets and Molly napped in the recliner when he wasn't tapping out pages about Vietnam or sending e-mails.

"We lived a pretty normal life, except we couldn't travel," Willette-Sheets said. Not by airplane, anyhow, but they went to movies, restaurants and malls in a specially equipped van. And privacy was an issue, because one or two hospice workers were always there. Sometimes Mary took over night duty.

"Only David knew how hard it was to get up every day," she said.

Every other week, Sheets would visit Aunt Bert, who was in her 80s. A martini would be waiting, ready to be poured down his feeding tube. German potato salad might be next, blended with a hot dog and bun.

"About 15 minutes later, he would say he had the taste," Ghimenti said.

The couple welcomed a change in Minnesota law that allowed handicapped people to work without losing their government benefits. Sheets started doing Internet marketing research for a graphic-design company. The company never imposed deadlines, but sometimes he worked 16-hour days anyway.

Life with a long-term disease was not easy.

"Behind closed doors, we've had several conversations about spirituality, and family, and ALS and how hard it is," Mary said.

"He would always tell me, 'I'm still David.' And he would cry."

Whitten started visiting Sheets as an ALS Association volunteer. They often watched football together, and once Whitten arrived to find a poker party in progress. A comely nurse had her arms wrapped around Sheets, holding the cards in front of his eyes.

"So many people looked to him for support," Whitten said. "We never spoke, but, man, did I feel his energy."

Last year, Sheets and his wife attended her father's funeral at Fort Snelling National Cemetery, where members of her Guard group held a full-honors ceremony. David told her: "This is exactly what I want," including a 21-gun salute, she said.

He had to quit working sometime after Christmas because his eyes weren't moving as nimbly as they had. As his few remaining muscles weakened, they would become "locked in," as Kronk described it, in a motionless body with a sharp and active mind.

"ALS sucks," he e-mailed his aunt.

He made his decision.

A legal choice

ALS patients who are mentally competent have a legal, moral and ethical right to make the decision to die, Kronk said.

"He made an informed decision to stop treatment that was keeping him alive. . . . It's not looked upon as assisted suicide," she said.

Sheets told family and friends. He told his buddies at the Veterans of Foreign Wars, which had been paying for repairs on his van for years. His wife introduced him to a Guard chaplain, who met with him several times and came last Sunday to hold his hand as he died.

Eight of his caregivers were there. So were his doctor, Aunt Bert, and two of her children and their spouses. Mary was there, with her mother, two siblings and Molly.

Sheets said something to each one before 3:30 p.m., when he was given an anesthetic. He was unconscious when the hospice nurse turned off the ventilator.

On Thursday, David Sheets got his 21-gun salute at Fort Snelling.