THE HOPE NEXT DOOR

“Swimming up from a drug-induced haze, a strange bald man was bending over me,” Mary Jo remembers. “‘Wow!’ I thought. ‘Either I have died and they shave all the angels’ heads, aerodynamically more efficient, or I’m not doing so well and this guy is here to give me my last rites. But where is his collar?’” As it turned out, she was right about one thing: she wasn’t doing well. No one at the hospital—including Jeffrey Wood, a volunteer providing companionship to cancer patients—expected her to survive the night.

That night proved fateful. When Mary Jo pulled through, Jeffrey continued offering her support in their shared neighborhood of Westbrook, Maine. The exceptional friendship that developed paved the way to eHope, a manifestation of Jeffrey’s vision for organized community-based care. First as neighbors, then friends, and finally co-workers, Jeffrey and Mary Jo established a network of caregivers who have provided community and, ultimately, hope to 67 patients facing life-threatening illnesses.

Jeffrey sits in front of his laptop, manning the eHope headquarters from Mary Jo’s dining room table. His glasses reflect the blue glow of the screen as he updates Mary Jo’s webpage with her latest test results. Nearly 51, he has the lean build of a longtime athlete, and despite the chill, wears shorts and a white shirt, marked with eHope’s blue flame logo. Over the past few months, the eHope office has been stationed wherever Mary Jo is receiving treatment. Since 2001, when doctors diagnosed her with multiple myeloma (a cancer of the plasma in bone marrow) and gave her 30 months to live, Mary Jo fought tirelessly. Despite chronic pain and constant treatments, she maintained a relatively normal life. But in the last year, the myeloma’s appetite for bone material has returned with added vigor.

When it became clear that Jeffrey (along with substantial help from his wife, Susan) and Bethany (Mary Jo’s Boston-based 24-year-old daughter), as Mary Jo’s primary caregivers, would soon need more help, Jeffrey summoned 24 previously unconnected friends, neighbors and volunteers. Together they formed an eHope group, committed to helping Mary Jo by assisting with everyday needs and providing emotional support.

A group-specific webpage serves as a community bulletin board. Whenever someone is available to lend a hand, they sign up on the needs list, meaning Mary Jo doesn’t have to delegate tasks and three casseroles never arrive on the same night. “We take care of the mundane things,” Leisa Collins, the group facilitator says. “That gives [Mary Jo] time and energy to focus on her wellness.”  All the while, group members maintain connections with Mary Jo and each other. This, in turn, fosters a sense of community that often translates into festive potlucks, wine-and-cheese parties and yard clean-up days. The group not only supports Mary Jo, but also each other.

“We need face-to-face, meaningful, deep community,” Jeffrey says matter-of-factly. “That’s the eHope mantra. Put 20 people together, hold the size of the group down and deepen those community ties, and then use technology to extend them. And when you do that—you put them in a room first and then go to the technology—deep things happen.”

Group members, known within eHope as “peeps,” rotate weekly through the role of “captain.” This person acts as the regular liaison between Mary Jo and the group, posting needs, messages and announcements on her webpage. This enables Mary Jo to share updates about her condition without feeling overwhelmed by a barrage of phone calls. Perhaps more importantly, she can reach out to her circle of supporters in a less draining way.

Most eHope groups are created around people dealing with debilitating illnesses like Lou Gehrig’s disease, multiple sclerosis and cancer, which can go on for years. Over time, the demands of providing constant care wear on even the most energetic of caregivers. eHope functions on the notion that if everyone helps in small ways, each person can keep their life in balance and is thus more likely to stay on for the duration.

“The person we need for an eHope group is the person who is willing to run an errand a month, five years from now,” Jeffrey says. “That’s a big commitment, but it’s not so much if it’s just an errand a month.”

Noiselessly, Mary Jo slides her pink fuzzy slippers over the smooth wood flooring toward the dining room table. She pauses to select a piece of candy from the bowl next to Jeffrey. “Wanna check out my pump? It’s pretty cool,” Mary Jo jests, groggily fingering the pain medication pump that’s slung over her thin shoulder. Her narrow face fills with a toothy grin. Delicate lines crinkle around her eyes where the olive skin is stretched too taut for true wrinkles to form. For a moment, she is a young 47 years old. But as she turns and shuffles toward the bedroom, she ages decades in an instant—her shoulders are drawn, spine rounded, neck permanently tilted to the right. Myeloma-produced bone tumors and lesions have collapsed several vertebrae and left her with a geriatric body, her once athletic 5’8” frame whittled to just 5’1”.

Draped in pink striped pajamas, Mary Jo makes her way to the bedroom where overcast skies smear flat light across lavender walls. From the other room, Dan Link, a pal of Jeffrey’s from the neighborhood pub and a peep who maintains Mary Jo’s rental properties, hollers a greeting before sitting down to chat with Jeffrey about tenant issues. Mary Jo calls out a weak, “Thank you, Dan!” Woozy with pain meds, she unsteadily crawls into bed. Wincing, with her deep-set brown eyes half-closed, she burrows under a throw blanket. Finally settled, her face relaxes. Her paper-thin eyelids flutter and her breathing is labored. The drugs blur the lines of consciousness. 

The fact that Mary Jo is in her own bed is no small thing. Given the advanced stage of her myeloma, the around-the-clock care she now requires is complex and challenging. If not for her peeps, it would be impossible to carry out at home. Mary Jo wonders: “How do people do that? I mean everyone who has a sick family member—they all quit their jobs and just wait ‘til things get really worse or really better? And then they either stick them in a nursing home or put them in hospice because those are the only two choices left that the government will help pay for?”

In the early stages of illness, Mary Jo felt the support of friends she knew through business or from playing basketball and tennis. But as she became increasingly disconnected from the social venues of work and recreation, those relationships faded. “All of my friends that I had before eHope, none of them are here anymore,” Mary Jo says. Longtime out-of-state friends offered support, but could help only so much from afar. A failing marriage finally shattered under the pressure of her diagnosis. Except for her then-teenage daughter, she faced the uphill journey of cancer alone.

Mary Jo’s predicament is not uncommon; we are becoming more isolated from one another. The Internet and its slew of online social networking opportunities have a vast number of Americans putting energy into hundreds of shallow distant relationships, rather than connecting with the people around them. Our roots are spreading wider, but they don’t travel deep enough to provide us with true support.

Jeffrey suggests that this is directly linked to the fact that in 21st-century neighborhoods, we get to know our neighbors through the blinds. This trend is precisely what he seeks to counteract. He credits a Midwest upbringing, a disjointed family and 20 years in the military for his deep-rooted appreciation for community. “I’ve always had this feeling growing up in Wisconsin, and then being in the army,” he says, “everybody needs a squad.” Twelve years in corporate HR piqued Jeffrey’s interest in social group dynamics, and web development work presented tools he was confident could be used to help keep people connected. “I started thinking of a way to use the technology,” he says,  “to deepen what the phone couldn’t give you.”

Jeffrey’s ideas began to find focus when he, his wife, and their daughter moved into what was once a close-knit community in Westbrook, Maine. They realized that with the closure of the local paper mill, and consequently, a drastic change in local demographics, anonymity had settled over the neighborhood. One day, when he noticed their next-door neighbor pulling an oxygen canister up the driveway, he was drawn to venture across the hedge. When he discovered that this single middle-aged woman, Patty, had six months to live and was utterly alone, he and Susan began, “just doing what neighbors are supposed to do.”

Patty was initially wary but eventually accepted their help. As Jeffrey regularly accompanied her to the cancer wing of Maine Medical Center, they passed by hospital rooms where he rarely saw visitors. “That just troubled me,” he recalls. “You should have people around you when you’re dying.”

After Patty died, Jeffrey sought out research on caregiving and the shifting values of community. “There’s a difference between affinity and community,” he contends. “Affinity means: I find groups of people who think, smell, believe, spend, do all those things that I do … Community is: Bang! You’re plunked down inside of a block, it’s all the people on the street, regardless of what they believe, what their lifestyles are. That’s your community. We don’t invest in that, we only invest in affinity. That’s our downfall.” Online groups and other intangible social networks fall into the affinity category, and when it comes to dealing with a serious illness, those far-flung connections aren’t the stuff of real support.

“We look at face-to-face community as nice to have, but not totally necessary. And I think it’s vital,” Jeffrey says. “Even as we talk medical care reform, nobody’s talking about relational care in the neighborhood. It’s virtually absent and it’s vitally important.”

Disturbed by what he saw at the hospital, Jeffrey began volunteering to provide companionship to cancer patients at Maine Med. He soon recognized a strong pull to “forge meaningful conversation and dialogue with the dying.” During those years as a hospital, and then hospice, volunteer, Jeffrey continually encountered people facing mortality on their own.

“There’s a false sense of security in the friends that we have,” Jeffrey believes. “Because we’re at work, we’re connected to them. But if our mobility is stripped away and you stop going to work tomorrow, those people fall away … [Then] if you have not done a proactive intentional outreach to your neighbors,” he continues, “you’re alone.”

As Mary Jo’s support system fell apart, Jeffrey and his family stepped up to help. Bethany was slow to warm up to the strangers bringing meals and taking care of household chores. “At first I really was resistant to it,” she admits. “[Jeffrey] kind of started his own eHope group without even knowing necessarily that that’s what he was doing. But by being a neighbor and coming over and helping with things.” It took time but, “ultimately I just grew to love them,” Bethany says. “They’ve basically been our family for eight years.”

Ironically, had Mary Jo and Jeffrey met in healthier times, Jeffrey claims, “she and I would’ve probably skipped right past each other, too driven to get to whatever it is we were chasing.” But as the disease forced Mary Jo, a woman with notoriously type-A tendencies, to reassess her priorities, she softened and eventually came to embrace this idea of community-based care. By agreeing to be the care recipient of Jeffrey’s first structured group, Mary Jo became the cornerstone of what would evolve into eHope.

This first group was short-lived. Mary Jo had rebounded remarkably well and wasn’t requesting enough assistance to keep a group functioning. Plus, Bethany recalls, “It was sort of a lot of individuals all trying to help but nobody actually accomplishing a whole lot.”

With time, Mary Jo became more involved with eHope as Jeffrey’s primary co-worker and eventually, vice president. “She’s one of [our] most proactive board members and what she’s brought,” Jeffrey says, “is reality.” Having once run her own company, she could effectively help with the business side of things, but perhaps her most poignant participation was reciprocating the relational care she received. “As a dying person,” Jeffrey says, “[she] came to the bedsides of the dying. That’s powerful.”

By the fall of 2008, her myeloma began showing signs of drug resistance and treatment options were dwindling. Mary Jo finally agreed to re-launch her group.

For the better part of a year, the group has worked together, assisting Mary Jo with day-to-day needs. “There are just so many different roles that people have fallen into,” Bethany says. “[Everyone] brings a different spirit.” Whenever she’s up to it, Mary Jo, who loves good food and friends, hosts group meals and makes sure the peeps at yard workdays are well fed. On bad days, she rests easier knowing she’s not alone.

“I mean, knowing that somebody, if you call, will bring food over to you. Or knowing that if you’re lonely and frightened, someone will come and sit with you. Those are real important things,” she says.

As Mary Jo’s health rapidly deteriorates, these gestures are more important than ever. She is too sick to participate in clinical trials; a bone marrow transplant is no longer an option.

Peeps still come by the house to say hello and take care of odds and ends, but her energy for visitors is waning. Jeffrey and the captain keep the peeps abreast of her condition as Mary Jo’s visits to her page become more infrequent. But in a brief, somewhat jumbled post, Mary Jo mentions “all the invaluable behind-scene peep help.” She writes: “I am frightened by what is happening to me,” then adds, “I am looking so forward to seeing each of you.”

Mary Jo rests, tiny on the bed. Any minute, Mike and Myrle will be by to walk her lapdog, Princess. Jeffrey is warming her heat pack. Lizzie may come to spend the night. Leisa will be calling soon to check in.

Though having been a part of eHope since the very beginning, Mary Jo is still struck by the altruism expressed by her group. With a faint smile and weak whisper, she voices her amazement at the help of her peeps: “They do … I have no idea why, but they do.”

Mary Jo died on a Tuesday. Jeffrey, Bethany and Lizzie sat at her side, holding her hands and each other. Fourteen minutes later, Jeffrey posted on the webpage: “Our beloved Mary Jo passed away a few minutes ago … Peace and comfort to us all, as we grieve this loss together, as a community of loving and caring friends.”

Alone in her mother’s house two days later, Bethany is restless and at a loss for what to do. With Princess at her feet, she sorts through papers piled at Mary Jo’s desk and finds a note that gives an empty reminder to call a doctor on Monday. She shuffles through the stack and gives up. She’s desperate for distractions and anxious to get back to her life in Boston.

“I knew this was going to happen sooner or later,” she says calmly, running her fingers through her long, straight brown hair. “But I think on Tuesday what [my mom] really taught me is that nothing in my life is ever going to be harder than this.” Her eyes well with tears. “It’s like I just ran a marathon and now I just have to walk to the other side of the room for the rest of my life,” she says, laughing feebly as she wipes her eyes.

Weeks after Mary Jo’s memorial, a handful of her peeps gather for a potluck at Lizzie’s house. In the cozy living room, platters of food cover the table and people sit or mingle about, chatting and eating. Susan brings out a steaming pot of fish chowder, and the air is thick with the rich aromas of comfort food. Leisa’s husband and five-year-old son play with the drums scattered about the room, Lizzie puts on some music. By the window, Jeffrey leans back in his chair, taking in the scene, a smile thinly veiling his acute awareness that Mary Jo is missing. Her loss is still fresh and has shaken his resolve to continue this work. “I’ve dealt with a steady stream of death and dying,” he says somberly. “How much of this can I do?”

Though this work is taxing, it’s also Jeffrey’s passion. Out of the grief that is experienced with each eHope care recipient’s passing comes renewed inspiration to offer relational care to others. eHope will continue to help people facing life-threatening illnesses, but Jeffrey has his sights set on a larger goal:  connecting neighbors before crises happen. “I don’t care how well you think you’re connected,” he asserts, “you need to intentionally know more neighbors—peeps on your block.”  He sees this as the next step on the road he and Mary Jo started down together. In a note left for her peeps, she wrote: 

Thank you for making my life richer & fuller because of knowing you.
You stepped out of your comfort zone and provided love and support for me and my family.
Each moment we have spent together has been cherished by me. Will you all honor me by continuing reaching out to other people; your neighbors, co-workers and friends?  Build bridges between you and them so when one of you requires help, someone will be ready and waiting to lend a hand.

I love and honor each of you.
-Mary Joend