For Mother’s Day in 1996, before the surgery that bonded them even more profoundly than as parent and child, Spencer Bean wrote in a card to Sharon Bearor: “I love you Mom. Soon you will have given me life not once, but twice.”
Two months later, in an experimental procedure at Massachusetts General Hospital that had been tried only about 30 other times in the country, Sharon and her sister, Jean Bearor, each donated a lobe of their lungs. Over the course of eight hours, Dr. John Wain removed Mr. Bean’s lungs, marbled and purplish red from cystic fibrosis, and replaced them with pink, healthy lobes from his mother and aunt.
A living-donor double-lung transplant was so new that no one could venture odds for long-term survival. Mr. Bean was 20 that July day as he lay on the operating table, helping advance science as much as he hoped to extend his life. He was 38 when he died in Mass. General on April 14, several months after his body began to reject the transplanted lungs and complications set in.
During the more than 17 years that followed the surgery, however, “everything that he set out to do, he accomplished,” said his cousin, Becky McAleney of South Portland, Maine. Mr. Bean’s aspirations were extraordinarily ordinary: He wanted the regular life that cystic fibrosis had withheld. He finished college and partied with friends, he landed a job and fell in love, and he became a father. Always short of breath until that day in the operating room, he ever after relished the simple pleasure of taking stairs two at a time.
“He was so excited to have a second chance, and he did not shy away from expressing that ‘wow,’ ” his mother said. “In the same vein, he didn’t want to be different. He just felt he deserved that, and that life was now going to be his to live normally.”
In a Sunday Globe Magazine article about the surgery, published in November 1996 and running nearly 8,000 words, Mr. Bean spoke without trepidation on the eve of the operation and with quiet poise a few months later, back home in Maine. “I only received the gift,” he told writer Laura Pappano. “I never had to ask.”
McAleney, who is Jean Bearor’s daughter, considered Mr. Bean more a brother than a cousin, because they were just a year apart in age and spent so many holidays together.
“One thing that keeps going through my mind is that we weren’t supposed to have those 17 years,” said McAleney, who spoke at Mr. Bean’s memorial service April 18. “We got 17 more years out of a highly experimental surgery. I don’t think we ever took those for granted.”
Cystic fibrosis was no stranger to the families of Brian Bean and Sharon Bearor when Spencer was born in 1976. The illness already had claimed six lives in their immediate and extended families. “CF has broken a lot of hearts, too many hearts in our family,” McAleney said.
Diagnosed at Boston Children’s Hospital when he was a baby, Mr. Bean was only 8 when a bacterial infection prompted surgeons to remove a lobe from his right lung.
His parents divorced in 1986 and he graduated in 1994 from Thornton Academy in Saco, Maine, where he was on the skiing and tennis teams. Still, his health continued to wane. Mr. Bean was attending the University of Maine at Orono when doctors decided he needed a lung transplant, but he told the Globe in 1996 that he was never bitter about cystic fibrosis. “It has defined who I am,” he said.
After the surgery, he returned to college, graduated in 1999, and got a job as a mechanical engineer with Stantec consulting in Scarborough, Maine. Through mutual friends he met Erin Chick in 2000.
“I was attracted to his sense of humor,” said Erin, who married Mr. Bean four years later. “He made me laugh and was just really easy to be around. We kind of clicked right away. He would probably hate me for saying this, but he was far from macho, and that’s what I liked about him.”
Though there were occasional health setbacks, “I feel he definitely lived to the fullest,” she said. They went on vacations, they skied, they bought a house in Portland, they hosted barbecues, and in recent years Mr. Bean began making his own craft beer, organizing annual tasting parties with friends who also brewed.
Erin and Spencer Bean also had two daughters: Ellasyn, 3, and Scarlett, who is 18 months old. “He immediately became a doting father,” Erin said, and he was eager to put together a swing set in the backyard.
“When you have a transplant, you obviously don’t have forever, but he always had such a positive outlook about those things,” Erin said. “He didn’t have it in his personality to say, ‘Oh, I have to do all these things because I have a shorter time.’ ”
Instead, Mr. Bean would speak with his wife about the future, the vacations they would take, and retiring someday.
“I remember when I said goodbye to him he said, ‘Mom, this isn’t the way it was supposed to be,’ ” his mother recalled, “and I said, ‘I know,’ because he really thought he was going to live to 60.”
Mr. Bean’s sole concession to looking back, albeit somewhat reluctantly, was to join the annual gatherings commemorating the day of the surgery.
“We never made a big deal about it, but we wanted to recognize this gift,” his mother said. “Last July was our last one; it was 17 years. We would do one toast — I think we all did martinis this time. ‘Here’s to life, here’s to your beautiful family. Here’s to love.’ ”
Last fall, Mr. Bean’s health swiftly slipped away as his body rejected the transplanted lungs. Complications led to surgery, a series of infections, and pneumonia. First at Mass. General, then at Spaulding Hospital in Cambridge, and then back at Mass. General, Mr. Bean tried, to no avail, to recover sufficiently so he could breathe without the ventilator he was placed on after surgery.
“At the end, he decided that he couldn’t stand the ventilator anymore, so they did a terminal wean and took him off,” his wife said. “So he decided his own fate, but by the end he couldn’t have stayed on much longer. I think he was holding on for me because he didn’t want me to be alone.”
In addition to his wife, daughters, mother, aunt, and cousin, Mr. Bean leaves his father and stepmother, Brian and Lisa of Saco, Maine; and his younger brother and sister, Adrian and Olivia, both of Saco.
At the end Mr. Bean, whose eyes were big and blue and inquisitive, made one more lasting decision and donated his corneas.
Wain, who performed the lung transplant in 1996, said Mr. Bean’s cornea donation was “a true testament to the kind of person he was. His spirit will live on for all of us who knew him and cared for him, and a testament to his spirit will live on physically as well.”
Those eyes, McAleney said in a eulogy, also live on in his daughters, who gaze at the world through eyes just as startlingly blue.
“Spencer always said, ‘I want to be an organ donor, too,’ and I thought, ‘Of course he’s going to give, because that’s who he is,’ ” his mother said. “What a joy for him to be able to continue to see through someone else. Someone will see life through his eyes and see it’s not all bad, it’s good.”