Computer networks of concern Connection: Loved ones and strangers reach out to those living with serious illness.

May 24, 1998|By Sarah Pekkanen | Sarah Pekkanen,SUN STAFF

In the quiet hours after midnight, Michael Heck sits down at the computer tucked in a corner of his wood-paneled family room. He is tired, but there is something he needs to do before he joins his sleeping wife upstairs. The 48-year-old aerospace engineer's fingers move across the keyboard.

Tap, tap, tap. Tapping fills the late-night silence.

"We received the results of the blood test taken yesterday," he writes. "Many of the readings were out of range by hundreds of percent. A nurse from Dr. Booth's office very compassionately helped me to interpret the implications. Her muscles are breaking down. Her bone mass is leaching into her bloodstream. Her liver function is compromised. These are all signs of terminal stage cancer."

His fingers stop moving, and he stares out the window at the bare poplar trees in his backyard in Williamsburg, Va. As a NASA consultant for 17 years, Heck always regarded computers as a tool, designed for speed and precision, programmed to follow his commands. Yet somehow, in the months since his wife Diane's diagnosis of cancer, the computer has become an emotional lifeline for his family.

After their three teen-age children are in bed, after he massages Diane's swollen legs and makes sure she is getting enough oxygen from the compressor by her bed, Heck comes downstairs, trailed by the family's beagle, Scrambles. In the house that he and Diane built together, amid keepsakes of their 26 years together, night after night, he writes.

Heck understands how the Internet, with tentacles stretching deep and far across the country, has a powerful ability to connect people. It connects strangers who socialize in electronic chat rooms, or join support groups for help in battling a shared illness. It connects professionals who gather information and share expertise during online meetings.

And when Michael and Diane Heck needed it most, the Internet connected their family.

Michael Heck turned to the Internet last fall to relieve Diane of the daily strain of repeating the same information to dozens of people who called to ask how she was. It was only natural for him to design a solution through technology. It was what he had been trained to do. During his years at NASA, he used computer simulation to teach astronauts how to re-enter the Earth's orbit. Now, he used his home computer to send nightly e-mails to Diane's mother, Camille, and her sister Jean in Baltimore, and to her friend Ruth Dell in Texas, who met Diane during a social work internship Diane did there more than two decades earlier.

The messages achieved their purpose of providing concise, up-to-date information on Diane. Very soon, the flood of daily phone calls eased.

At first, the messages were delivered to fewer than a dozen close friends and family members. But as word spread, Heck was asked again and again to add names to the e-mail list: The mother of one of their son Ben's soccer teammates; a friend of Diane's who was on sabbatical in China; and the children's pediatrician, who lived two houses away and worried when he saw lights come on at night in Diane's room -- all wanted to share in her struggle.

Weeks passed, and Heck's e-mail list grew to 40 recipients. Then something he never anticipated happened. Each morning, after everyone receiving Heck's e-mails hurried to their computers to learn about Diane's previous day, they sent return messages that filled Heck's computer screen. He printed them out and brought them to Diane's bedside. Sometimes, when she felt too weak to talk, she simply smiled as Heck read the loving messages.

When other communication might be too difficult, the Internet allowed those who loved Diane to stay close to her. Unlike telephone calls or visits, e-mail messages could be read at the easiest time for Diane.

The incoming messages offered more than emotional comfort. Sometimes, they provided practical advice: One letter detailed alternative therapy treatments; another, from a nurse, recommended a mattress that would prevent bedsores. Heck quickly ordered the mattress for his wife.

"Through the Internet," Heck said, "Diane's illness became a community experience."

Relief for the chronicler

Another unexpected event occurred, so slowly that Heck couldn't pinpoint when it started. His e-mail messages began to provide more than a chronicle of Diane's worsening condition. Somehow, he found, writing about Diane helped him deal with his emotions. Sitting at his computer alone at night, when the house was still, he could express the fears he kept hidden during the day.

"It could be my imagination," he wrote only two weeks before her death, "because these changes take place so gradually, but I believe Diane is slowly withdrawing from the outside world. She discards mail with barely a glance, and no longer sings, laughs, or cries."

On Monday, Feb. 16, at 6: 16 p.m., Diane Heck died in the bedroom of the cedar home she and her husband had built. She was 48 years old.

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