When the ‘ability to grieve is frozen,’ sorrow becomes chronic

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For the families of those including the dozens of hostages from Israel who have been held in captivity in Gaza for more than a year, for families of children who have been kidnapped and of soldiers missing in action, not knowing if their loved ones are dead or alive means they can’t grieve.

“Their ability to grieve is frozen — and that is part of the agony,” said social scientist Pauline Boss. “They are stuck with a chronic sorrow.”

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Boss, professor emerita at the University of Minnesota, has spent her career studying ambiguous loss — a term she coined in the 1970s to describe a profound sense of loss and sadness not associated with the death of a loved one; an unclear loss that has no resolution.

It can be a loss of physical connection when a psychological connection remains, as with the hostages or a kidnapped child; it can also involve a physical presence remaining when a psychological presence is gone, as happens in Alzheimer’s disease and other forms of dementia, and “it can go on for years, even decades,” she said in an interview.

“That paradox of simultaneous absence and presence is also there for families in which mental illness is present — where a person is one way or, when they are having an episode, another way,” said Boss, who will speak in Montreal on Thursday, Oct. 17 at AMI-Québec’s Annual Mental Health Forum. “In a family where there is mental illness, you have to live with it constantly — never knowing when the next episode will be.”

Lori Tyrrell’s son was 17 or 18 when Tyrrell, her husband and her sister “started to see some changes” in him, she recalled. His behaviour became erratic. His sister “couldn’t understand what was happening. I remember her crying, ‘I lost my brother.’”

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Six years ago, he attempted suicide “and that was the start of our journey,” said Tyrrell — one in which the family feared for his safety all the time.

Tyrrell, 56, has read a great deal about mental illness and attended many workshops. She credits AMI-Québec and executive director Ella Amir for support and help the family has received. There has been no definitive diagnosis beyond a psychosis, but for the past two years her son, now in his late 20s, has been “very stable.” He takes medication and is in the care of “an incredible psychiatrist,” said Tyrrell.

He lives with his parents, works out intensely in a home gym and is studying to be certified as a personal trainer. “He’s in a good head space,” said Tyrrell, who will share her personal story at the AMI-Québec forum. He is no longer in touch with friends he had before becoming ill — “kids don’t really understand what is happening,” she said — but is in contact with family members and “we do a lot of family events.”

“We are stronger as a family than before this happened. There is a lot more forgiveness and life is more important than it used to be. We talk about everything. And there is no judgment.”

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Tyrrell and her husband want to give their son “every opportunity to be on his own. We love him. We will do anything we can. That’s all we can do.”

Ambiguous loss can involve sadness over the loss of a future once envisioned.

“When you are in your early 30s, you see your family being a normal family and assume your kids will do well and get married,” said Tyrrell, “and then something like this happens and everything changes.

“It is a loss. It is a grieving process you go through as parents.”

Jonathan Borenstein used to play hockey six days a week and hit the gym daily. He worked as a plumber. Then in June 2021, following surgery on his right elbow, he developed a burning sensation in his arm. It worsened, so much that wind blowing on his arm was painful. It took months to receive a diagnosis: an excruciating condition known as complex regional pain syndrome. Its cause is not completely understood.

“My pain was 15 on 10 all day, every day,” recalled Borenstein, who will also share his personal story on Oct. 17. “There were definitely a lot of dark days that went along with my diagnosis. I wasn’t able to do anything; I didn’t want to see anyone. I was in a pretty bad mental place and physical place.”

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Although the pain has lessened, it is still intense. “On a good day, my pain is 6 or 7 on 10,” he said. He is unable to work, wears an opioid patch 24/7 and gets regular infusions of ketamine for pain management at a Montreal hospital pain clinic.

He can’t play with his sons, 9 and 5, “as intensely” as he used to. He and his wife have worked to keep their relationship strong and he has kept close friends, but “I have definitely lost a few along the way,” said Borenstein, 41.

“I have lost quite a bit of my life.”

The notion of ambiguous loss also covers what we might not necessarily think of as losses: a child given up for adoption, for instance, or a spouse after divorce. Their relationship was ruptured, but has not disappeared. “They are present and also absent at the same time,” said Boss, 90.

Growing up in a Wisconsin village, Boss was aware of the homesickness her father experienced after leaving Switzerland. “Longing for faraway family members was so common that at an early age I became curious about this unnamed loss and the melancholy that never went away,” she wrote in Ambiguous Loss: Learning to Live With Unresolved Grief (Harvard University Press, 1999).

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Being ghosted is another form of ambiguous loss. “It is a very dysfunctional way for humans to interact,” said Boss. “There is a bit of cowardice in it.” That ghosting happens in families “is very concerning to me. They may not like each other, but they could recognize each other at holidays. It seems to me that a total cut-off is the easy way out: It is an intolerance for ambiguity.”

And coping with ambiguous loss, she said, means learning to tolerate ambiguity. Western cultures are geared toward clarity, certainty and solutions — and none of that comes into play when an elder has dementia or a family member has a mental illness.

“You have to learn to think both/and instead of either/or: here or gone, good or bad,” Boss said. “Someone with dementia is both here and gone. A missing soldier may be dead — and may not be.”

Speaking this way with families, she would “visibly see their stress level go down. … It doesn’t give them hope, but it is as close to the truth as you can get. The person is both here and gone.

“As a therapist, I could not say to them: ‘Wake up — they are dead.’ It would be cruel on my part. And I also could not say, ‘Keep hoping,’ because then they don’t keep moving on, and that is dysfunctional.

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“With both/and thinking, you can hold the paradox and live with it.”

Boss has developed guidelines for building resilience that equips people to move forward and live with not knowing. “There is no closure. You live with loss; you don’t get over it. You just need to find meaning and new hope in your life.” She is influenced by the work of Austrian neurologist, psychologist, philosopher and Holocaust survivor Viktor Frankl (1905-1997), who postulated that there is no meaning without hope and no hope without meaning.

Reconstructing one’s identity after loss is another guideline. “Who are you if you are now parenting your mother? Parents have told me they hesitate when asked how many children they have if they had a stillbirth or a miscarriage. It is confusing.”

Another guideline is relinquishing our desire to be in control and our need for mastery. Normalizing ambivalence — becoming accustomed to having ambivalent feelings — is yet another.

Boss has written several books and dozens of academic articles about ambiguous loss, practised as a clinician helped those experiencing it, and trained therapists and humanitarians around the world to help those suffering from its trauma as a result of war, terrorism and natural disasters. She travelled to New York City with graduate students to work with families of the missing after the 9/11 terrorist attacks, for instance, and trained people helping families affected by the 2023 earthquake in Turkey and Syria.

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She gave up her family therapy practice when she became a caregiver to her husband as his health declined — he died in 2020 — but Boss still works professionally training humanitarian groups.

AT A GLANCE

Ambiguous loss is the subject of AMI-Québec’s Annual Mental Health Forum, taking place Thursday, Oct. 17 at 7 p.m. at Concordia University’s Oscar Peterson Concert Hall, 7141 Sherbrooke St. W., and online at amiquebec.org/forum. Keynote speaker Pauline Boss, the social scientist who coined the term, will address the challenges it presents and discuss ways to make peace with it and move forward. Lori Tyrrell and Jonathan Borenstein will share their experiences with ambiguous loss. The moderator is Sonali Karnick of CBC Radio.

The presentation, which is free, will be in English; there is no need to register. The forum is co-sponsored by Concordia’s department of psychology and its Centre for Clinical Research in Health.

AMI-Québec helps families manage effects of mental illness through support, education, guidance and advocacy.

sschwartz@postmedia.com

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