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

THE BALTIMORE SUN

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.

Late that night, Michael Heck went downstairs to his computer for one final message. "Thank you from the bottom of my heart for your support, love, caring and prayers for Diane," he wrote as his eyes filled. "She always read every message you sent; when she could no longer get to the computer, she read the hard copy printouts I made for her; and when she could no longer do that, she listened as I read them aloud to her. Each one was like a special telegram. She and I both learned the depth of your kindness and compassion, and the preciousness of friendship. For this, we are both grateful."

Reaching out anonymously

The Internet, often regarded as a cold, impersonal medium that puts distance between people, can also bring together those most in need of emotional support. In an estimated one in five American homes, the Internet is transforming the way people keep in touch and become informed. As Michael Heck found, the Internet can keep families close during crises. It also allows people who have never met -- but share a common problem -- to forge bonds. This is especially true for people with cancer and other serious illnesses.

"Often the things you need help with are difficult to discuss and deal with," said Doug Davis, a professor of psychology at Haverford College in Haverford, Pa. "It might be a disfiguring illness, or something associated with shame. The Internet is a medium that allows you to share exactly what you want to share. No one sees how you look. They don't have to hear your voice. You can find people easily, and you can reach out and offer -- or ask for -- support in a way it is difficult to do in person."

Gifts for a never-seen friend

At 3 a.m. on a warm August night, Susan Frisius pulls off the highway in Buffalo, N.Y., and closes her eyes for a catnap. It has been hours since she left her South Hadley, Mass., home, and another full day's drive stretches ahead of her.

In the back of her rental car, packed carefully in a cardboard box, are 18 gifts. Frisius doesn't know what is underneath the bright paper and ribbons. She is traveling 900 miles to deliver them to Patricia McCombs in Kokomo, Ind. -- a woman she has never met.

Frisius is making the journey not only for McCombs, but for 18 other women who began talking through the Internet after each was diagnosed with breast cancer. Frisius, now in remission, created the electronic support group because she wanted to ease the emotional isolation that can accompany the disease, but knew a traditional meeting would prove too difficult.

"I was told if I joined a support group, it could double my life span," Frisius said. "But I was sleeping 23 hours a day, and couldn't possibly have gone to a meeting. On the Internet, you don't have to wear a wig, you can sit in your bathrobe, and you can stay for only five minutes if you want to."

From few to national forum

What began as an occasional discussion between a few women rapidly expanded into a national network. Every night at 8, the "BC Forum" opens for women to listen to each other's stories, and to share their fears (at www.lifetimetv.com, search term # BC Forum). Sometimes, family members and close friends of those stricken with breast cancer log into the support group. Other women come back long after they enter remission.

The women may not know basic details about each other, such as that Frisius once worked as a bird breeder, and that she has opened her home to mentally and physically disabled women who need a place to stay. Yet group members often relate to one another on a deeper level than they can with even close friends and family members. From behind a veil of anonymity, secure in the knowledge that they are connecting with an empathetic audience, women are able to engage in truly free exchanges, participants say.

"People who know you in the real world don't understand that fear you get every three months when you make a doctor's

appointment," said Frisius, who has been cancer-free for four years. "You get a sore throat, and you think, 'It's a cold.' I get it, and I think, 'Cancer.' And for us, sometimes it is."

Patricia McCombs, first diagnosed in 1992, went into remission but her cancer returned in July 1997. By then, it had spread to her liver and her bones. During the last months of her life, realizing the preciousness of her time, McCombs wanted only close family members and her pets to visit her. Yet again and again, she logged onto the Internet support group.

"The women on the Internet could understand my mom, even more than I could," said McCombs' daughter, Michelle Nearon. "They knew the ins and outs of cancer. They knew the fears, the 'Why me's.' "

When Frisius asked Nearon if she could surprise McCombs by visiting in person, Nearon didn't hesitate. By then, the women were calling each other sisters. "Sometimes total strangers walk into your life and they just keep you going," Frisius said.

Other women in the support group knew it would overwhelm McCombs if they visited too, but they wanted to do something for her -- something that would symbolize how close they felt to her.

And so after Frisius arrived at McCombs' home, after they hugged and talked quietly for nearly an hour, as she stood to leave, Frisius placed the box of gifts beside McCombs' bed.

"Open one each day," she said.

Inside were pressed flowers from the garden of one support group member, the favorite book of another, and, carefully wrapped in tissue paper, a collection of angels: Ceramic angels with painted faces, tiny angel pins, and delicately crafted angel candles.

"When you're diagnosed with cancer, that's what you hold on to," Nearon said. "You hold on to angels."

After McCombs' death on Dec. 15, Frisius erected a memorial on the Internet with a photograph of McCombs and space for support group members to share memories.

"When she came to BC Forum, she always brought a feeling of gentleness into the room," Frisius wrote. "I will miss her."

Sharing experiences

All over the Internet, discussion groups are springing up for every conceivable illness -- for common diseases such as breast cancer to rare afflictions such as Mantle Cell lymphoma. Online support groups exist for bone marrow transplant patients, Parkinson's disease, and Tourette's syndrome, to name a tiny sampling.

Those who frequent such meetings often shield their identities, finding that anonymity promotes freer disclosure. However, this also allows intruders to slip in and make disrespectful comments -- although this happens infrequently, support group participants say. The more common stories are ones like Frisius': A group of strangers, facing the same enemy, forges a bond and finds power and comfort in a shared experience.

But the Internet can also link people who, on the surface, have nothing in common.

Help from afar

Barry Hutchins, 26, knew the 72-year-old neighbor he considered a surrogate grandfather, Arnold Smith, needed help badly.

Cancer, diabetes, and failing kidneys were overwhelming Smith, Wilmington, N.C., resident. As medical test after test turned up more discouraging news, Smith's spirit became as battered as his body. Hutchins was desperate to do something.

Then the idea came to him: What if he could get people to send Smith uplifting messages?

Hutchins knew his plan was a gamble. Why would anyone bother to write to a person he or she didn't know? He logged onto the Internet without telling Smith.

"He has a hard road to face," he typed in his posting on several Internet cancer sites. "If you could please e-mail a get well wish to him, I feel that this will greatly lift his spirits and help him in his fight for life."

A few days later, Hutchins arrived home from his sales job at Wal-Mart and turned on his computer. He stared at his list of e-mail messages for a moment, then printed them out and hurried to Smith's bedside.

"There are others who understand what you are going through. Keep your spirits up and remember there are people who care -- Gin." "I just want you to hang in there. I know you can do it -- Joe in Wisconsin." "I am the mother of a 3 and 1/2 year old boy with a kidney transplant. You are in our thoughts and prayers as you are dealing with your health issues -- Warmly, Brian's Mom."

Smith listened to Hutchins read message after message, from all over the country and as far as New Zealand. Some were from elderly people, others, from men and women in their 20s. Some were also suffering from life-threatening illness, but many were in perfect health. All wanted to help Smith. He kept the printouts in his bedroom so he could read them again and again.

Not forgotten

Then, out of the blue, a second round of messages arrived.

The people who had written hadn't forgotten Smith. They wanted to know how he was doing. Hutchins logged onto his computer and described Smith's difficult recovery from a round of radiation. There was something else he wanted to say, too.

"Over the years, I have slowly become more and more disappointed in how people were becoming so hateful," Hutchins wrote. "All I hear on the news is the bad things people do, and I, and possibly some of you, came to believe that compassion towards your fellow person was dying. Then you all started writing. It has touched me and changed me in a way I never thought possible."

As weeks passed, Hutchins kept Smith's new friends informed about his declining condition. The stack of encouraging responses from around the globe grew higher and higher.

Then something inexplicable happened.

"My husband was supposed to have an operation on his back," said Smith's wife, Jean. "Then all of a sudden, he started feeling better, and not having to use a cane so much, or a walker. He went in for a pre-op and the surgeon said, 'You're better.' Now how can you explain that?

"If you're logical, you look for the logical reason, the fact that he had a blood transfusion and has been having synthetic blood shots," she said. She also sees a different possibility, one in which faith and love are just as powerful as modern medicine.

Like Jean Smith, Hutchins isn't sure what exactly helped his friend. He knows Arnold Smith still faces an uphill fight. But he will always be grateful to the people who reached out to help a stranger.

"In the world, you don't necessarily have to know a person face to face to really know a person," Hutchins said. "I don't think it's possible to be much closer than we've all become."

Pub Date: 5/24/98

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