Cynthia LeBlanc Schuurman and her husband Gerrit shared a storybook marriage for decades, from a chance meeting in Amsterdam to newlywed years on Beacon Hill to later stints living in Spain and Germany. But in 2008, it came to an abrupt halt.
“We were making dinner one night, and suddenly he became dizzy,” Schuurman recalls. “He kept saying, ‘I really can’t swallow.’ I kept giving him glasses of water, and he kept spitting them up.”
Gerritt was rushed to the hospital, where he suffered a brain aneurysm while under sedation. Two and a half days later, he died.
“I never really got to speak with him at the end,” Schuurman says. “I said some things to him, but mostly I was just kind of hysterical and being pushed out of the way by the medical staff, crying.”
Schuurman returned to the United States to be with their son, who’d just returned from a second tour of duty in Iraq. She thought he might need help readjusting, and that being around family might ease her own transition to widowhood.
As time progressed, though, Schuurman felt like she was losing her struggle to accept Gerrit’s death.
“I kept thinking, ‘This cannot be happening,’” she remembers. “This is the end of our life together—this big adventure in Europe, this beautiful life, this loving marriage. It’s not possible.”
One day, as Schuurman’s spirits were at an especially low ebb, she was riding the “T”—and found herself staring at an ad for a medical study at Massachusetts General Hospital on something called "complicated grief.”
“The poster said, ‘Are you feeling stuck in grief?’” Schuurman says. “’Are you depressed and crying all the time?’ And I thought: ‘Wow. That’s me.’”
Desperate for help, Schuurman signed up for the study—which is taking place at four locations around the U.S., and is being overseen at MGH by psychiatrist Naomi Simon. The study examines the use of medication to treat "complicated grief", whether it’s administered in conjunction with therapy or taken alone.
“In grief, there’s a normal progression from an acute to a more integrated form of grief after a death, where one adjusts to the loss and is able to re-engage in life without the loved one,” Simon said.
But for some individuals, Simon added, the grieving process gets derailed.
“There can be a longing, and a yearning, and really a disbelief that the person is gone,” she said. “Patients often will even become suicidal, and feel like their life is hopeless.”
The latest iteration of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), refers to complicated grief as “Persistent Complex Bereavement Disorder,” and identifies it as an emerging diagnosis—meaning it hasn’t yet received the full backing of the psychiatric community. Symptoms, according to the DSM-5, include a “a persistent yearning/longin
But some observers believe even that tentative endorsement is premature.
Allen Frances, a emeritus professor of psychiatry at Duke University, the former head of the DSM-4 task force, has been a vocal critic of the DSM-5. Calling some grief complicated “presume[s] there is a right duration and style of grief,” and can “reduce the dignity of the person’s suffering and the love felt for the lost loved one," Frances said in an email.
Frances also worries that complicated grief could become “a target for pill pushing," and concluded, "it is too early to tell whether complicated grief is better conceived as mental disorder or existential dilemma.”
For Dr. Simon, however, objections like those voiced by Dr. Frances miss the point.
“I think there’s really too much controversy about whether this should be considered a thing or not,” she said. “To us, it’s really whether there is a condition we can help people with, versus whether there’s something wrong with someone.”
In Cynthia LeBlanc Schuurman’s case, the treatment she received at MGH did provide relief. But it wasn’t easy.
“I was supposed to have an imaginary conversation with my husband,” she said. “It was recorded, and I could say to him the things I would have loved to have said to him at the end.
“I said I loved him, I missed him, I don’t know how I’m going to go on without you, all of those," Schuurman said. "That was a great moment. I finally felt a relief."
Afterward, Schuurman was able to do things that had felt impossible—like reclaiming her belongings from Europe, and putting pictures from her marriage on the walls of her new home.
“This truly gave me back my life, this program,” she says—adding that, without it, she “would have been lost for a long time."
And whatever you call it, that’s a fate no one wants to suffer.