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Heartbeat

Alicia and Michael Stillman

This past autumn, in the living room of their Bloomfield Township home, on the couch where their daughter, Emily, had often stretched out to watch TV, Alicia and Michael Stillman sat beside a young man in his 30s, a father of two small children.

Even though these three people have only recently met, the man invites the Stillmans to lean in and lay an ear against his chest. The heart they hear is not the heart with which the man was born.

It is Emily’s heart.

Emily Stillman ’15, the second of Alicia and Michael’s three children, died in January of 2013 from bacterial meningitis, her life cut short at the age of 19.

Somehow, from the thick fog of grief the Stillman family has emerged. Though tough days still occur, they say. And “Why?” remains unanswered. Confusion, periodically, continues to persist.

But there also has grown a deep appreciation of living and an immense satisfaction of knowing that others live because of Emily.

“I can’t find a reason why this happened. Why Emily?” Alicia says. “But we are blessed and we need to bless others. We came to the realization that what happened is bigger than us, bigger than her. All of our family—Emily, too—are meant to do good.”

One night, a little more than a year ago, Emily called home to talk with Alicia. She told her mother she had a horrible headache, was exhausted, and planned to go to bed early. It would be the last time Alicia would hear her daughter’s voice.

The headache got worse, and later that night Emily was admitted to a local hospital, receiving care for a migraine headache. When the treatments didn’t work, doctors performed additional tests. A diagnosis of bacterial meningitis followed, and Emily’s situation deteriorated. Her brain continued to swell, and it became clear to medical staff that despite their best efforts her survival was unlikely.

Alicia rushed to Kalamazoo, and Michael, an attorney on a business trip out of the state, called the family’s rabbi, who drove from the Detroit area to be with Alicia. Michael flew to Kalamazoo immediately. His daughter was on a ventilator, unconscious and very near death. The Stillmans asked medical staff to keep Emily alive in order to give their oldest daughter, a student at the University of Michigan, time to return from her study abroad in Brazil. Emily also has a younger brother, then a junior in high school.

Together in the hospital, the family was in shock. So when members of Michigan Gift of Life, an organization that matches organ donors with patients in need of a transplant, approached Alicia and Michael, the couple recoiled.

“We said, ‘Absolutely not. Stay away,’” Alicia recalls.

They sat holding each other, distraught. Then Alicia remembers experiencing a shiver. It was Emily’s spirit, she says today, urging them to change their minds.

“We talked it over, and realized we’d made a terrible mistake,” Alicia says. “That brush against my neck was my daughter telling us to think twice.”

Emily died a few days later.

The Stillmans agreed to donate Emily’s organs, but Michael wasn’t sure if it was allowed under the Jewish faith. He talked to the family’s rabbi.

“I asked him if it was frowned upon. He told me, ‘Michael, it’s the ultimate “mitzvah.” It’s the ultimate expression of human kindness, to give the gift of life.’”

 

The Stillman family; Emily is at left.

Organs that made life possible for Emily do the same today for five people in Michigan and Ohio. The man with whom the Stillmans sat in their living room is a doctor in Cleveland. A man from Ubly, Michigan, received a kidney, and a man in Grand Rapids breathes because of the gift of one of Emily’s lungs.

The enormity of these life gifts is not lost on Emily’s family.

“This may sound strange coming from a grieving mother, but I feel blessed in the way that you feel when you give someone a gift. It’s an emotional, almost proud feeling,” says Alicia. “What we did with Emily saved the lives of five people and changed the lives of many others. That feeling is powerful.”

The Stillmans have met three recipients of Emily’s organs. Each occasion is a wrenching physical reminder that Emily is no longer with them, but it’s also a celebration of life.

“Those families are part of our family,” Alicia says. “They care for a part of our daughter. Something of us is living inside of them.”

Correspondence with the recipients has revealed emerging connections. The man living in Ubly noted that, for some reason, he’s shopping more than ever. Emily was a shop-a-holic. The man in Grand Rapids finds himself immersed in Sudoku puzzles, something he’d never done previously. Emily was enthralled with them.

“She loved puzzles,” Alicia says. “I buried her with a Sudoku book.”

Alicia and Michael think of the children of the parents who received Emily’s organs.

“This is important to us,” Michael says. “We lost our Emily. It sucks. But Emily’s gift means that 15 kids have a parent they might otherwise have lost.” Fifteen … and counting. One of those kids—a child of the doctor in Cleveland—was born after the transplant.

The Stillmans were not organ donors before Emily died. But they are now, and their involvement in educating the public about the importance of organ donation has helped them heal.

Alicia attends Michigan Gift of Life events where she shares her story, always with a large portrait of Emily. The couple was recognized recently at an awareness-raising rally arranged by MGL at the state capitol.

“Organ donation was never on our radar. Not for Emily either,” Alicia says. “You don’t tend to think about it if you don’t know someone who has received a gift like that.”

And so the family has been incredibly open with their experience, even inviting local media to their home on the occasions they have met the recipients of Emily’s organs. Donations to the organization, Alicia says, increased after the stories were published. She is also involved in the effort to raise awareness of the need for meningitis vaccinations and booster shots.

“Donor families like the Stillmans provide a very important and under-reported side of (organ) donations,” says Jennifer Tislerics, special events and partnerships coordinator for Michigan Gift of Life. “Everyone knows about the second chance of life. Fewer realize that many donor families benefit from seeing the positives that come out of their dark time and from the opportunity to tell a loved one’s story. It’s heroic in a way.”

There are more than 80 organ recovery organizations in the United States, and, by law, hospitals must report every death that occurs at their facility to the organization in their area. But in only about 2 percent of cases are the deceased person’s organs or tissues viable for transplantation, Tislerics says.

That’s what makes a vast organ donor network so important. Kalamazoo College recently took second place among 14 colleges and universities statewide in the 2014 Michigan Gift of Life Campus Challenge to register students to become organ donors. A total of 60 K students—a little more than 4 percent of the student population—registered during the six-week event.

“Organ donation procedures treat the deceased and the family with the utmost respect,” says Tislerics. “Prostheses are used to replace donated organs so that the appearance of the body is not affected,” she says. “There is no age limit for organ donation. We have had organ donations from a 93-year-old and tissue gifts from a 103-year-old. And most religions in the U.S. support organ donation as well.”

Emily had a second “family” that included friends and professors, staff and counselors at K. Members of this second “family” took her passing hard. At a memorial at Stetson Chapel, Emily’s friends recalled a classmate and confidant who will never be forgotten.

“Emily didn’t do things small. Everything about her was exciting,” says Skylar Young, a classmate and close friend of Emily’s. “Whether we were taking a trip to the vending machine or going on one of our secret excursions to Sweetwater’s Donut Mill for ’Donut Wednesday,’ she was laughing, singing, screaming out something ridiculous, living life to the fullest. She loved big–plain and simple.”

The Stillmans were impressed with K, especially in the last days of their daughter’s life.

Emily had looked at a few large, in-state public institutions for her college years, but Kalamazoo College kept on being suggested to her as a place to check out. The family did, and when they visited the College, Emily got excited.

“K sent the most amazing acceptance letter—bonded paper, hand signed, referencing her personal essay,” Alicia says. “We were, like—Wow! She fell in love. She found a place for herself.”

During Emily’s hospitalization, representatives from the College visited the Stillmans to lend comfort, attending to any needs and bringing them meals. Emily’s friends and professors visited to say goodbye. President Wilson-Oyelaran came as well, one night bringing the family dinner and sitting with them, just to be there.

“The College was phenomenal,” Alicia says.

After Emily died, the College arranged for a bus to transport professors, staff, and students to her funeral and shuttle the group to different venues that day, ending at the Stillman home.

“She had the warmest, most beautiful group of friends at K. We are still in contact with them,” Alicia says. “Her K friends are close with her friends from here. At the funeral, at the grave site, all the K kids held hands with kids from her high school. They all gave the eulogy together. I will never forget that.”

In the mail one day, Michael found a letter from the College. Enclosed was a refund check for the academic term interrupted by Emily’s sudden death. He put the money into The Emily Stillman Fund, created by the family to help pay for research on bacterial meningitis. He was taken aback by the gesture.

“I can’t imagine a university doing that,” he says. “We never even asked for it.”

Alicia and Michael have friends who have lost children, couples who do their best to lead normal lives, but simply cannot escape the grief. There is a high divorce rate among couples who lose a child, and that fact terrified Alicia and Mike.

“Their lives go on,” Alicia says. “But they’re…”

“… shells,” Michael adds.

The Stillmans are a close, loving couple, and have relied on each other many times over the past year to get through days when the sadness creeps in.

And yet, grief is an individual path, with no end.

“We can walk next to one another and be there for each other, but the journey is separate. It’s different for each of us.

Emily Stillman

“There is no closure in the death of a child. But there’s no closure in love, either.”

Alicia and Michael focus on each other’s needs, and on keeping Emily’s memory alive.

Michael believes that Emily would have made it on Saturday Night Live. She was that funny, that creative and talented. The captain of her high school forensics team, a young woman who took first place in a statewide competition her senior year, she loved the limelight. “She was the ham of the family,” he says.

“She relished being the center of attention. She made people laugh, she made me laugh,” Michael adds. “If someone came to you and said they had an incredible gift for you but you had to give it back after 19 years, would you take it? …

“… I’d take it. I would do it all over again.”

Emily had a voice, too, a voice that commanded attention when she spoke, and soothed when she sang. A voice that will never be heard again, but can still be sensed.

Sensed in the iambs of a beating heart, in the intake of breath into expanding lungs, in the love, laughter, and longing to live intensely that Emily inspired in everyone she considered friend and family.

For now, her mother speaks words for her. “I think Emily would urge her friends to go out and be light to the world. Make a difference. Change what shouldn’t be. Make your mark,” Alicia says. “Emily certainly left her mark. We find out more about that every day.” (Story by Chris Killian)

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