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Key points
- Advocacy can lead to feelings of empowerment and connection to others.
- Finding purpose and helping others naturally helps oneself.
- Advocacy can be a double-edged sword: People have different reactions to “going public” with a family story.
Six weeks after Lori C.’s son Nicholas died from a substance overdose, the Long Island mom got on a bus headed to Albany, New York, to advocate for some much-needed reform to the state’s insurance laws and drug policies.
While many parents might still be in the throes of shock and immobilized, other people in the early stages of grieving find it helpful…almost necessary…to do something that has a purpose. It’s not the urge to just be “busy” but to be busy with a cause that has personal meaning to their lost loved one.
For Lori, it was advocating for better, more comprehensive, and faster insurance approval for addiction rehabilitation. On leave from her job for six months, Lori stumbled onto an informational forum about the opioid crisis and the need for insurance reform.
“I went to the forum at our local community college, and I found that there were a lot of things I could do,” she said. “I got fired up.”
Ten years later, Lori is still fired up. Her volunteer work includes that of advocate, lobbyist, and noisemaker on the opioid and fentanyl issue, as well as heading up an organization called Families in Support of Treatment, which focuses on the emotional strain of having a family member with substance abuse disorder.
“In the beginning. I never used the word purpose, to be honest. It never crossed my mind. But now, yes, I think that when a mom loses a child, we ask ourselves, ‘What do I do now?’ My work makes me feel connected to my son. It’s helped me heal,” she said.
In 2017, the National Institutes of Health (NIH) conducted interviews with 43 Canadian mothers whose children had died from substance use to understand their experiences of drug policy advocacy.
The study’s findings showed that “participants’ motivations for engaging in advocacy were rooted in their experiences of grief and that advocacy led to feelings of empowerment and connection to others.”
Do we heal better when finding purpose?
Grief counselor Sharon Greaney-Watt of Babylon, New York, says, “Yes.”
“My experience with those grieving is that those who turn their pain into purpose often do indeed do better,” she said. “Finding purpose and helping others naturally helps oneself. Looking beyond oneself with purpose helped to manage the helplessness and hopelessness felt as they went through the grieving process.”
Long Island-based psychotherapist and interfaith chaplain Susannah Godspeed, MDIV, adds, “If the purpose is goal-oriented, then that’s the buy-in. I'm getting something by doing it, and the getting is purpose.”
After her grandson Gabriel died of an overdose in 2010, Paulette Phillippe of Mattituck, NY, remembers how her family had the additional struggle of paying for funeral expenses. In 2020, to mark Gabriel’s 10th anniversary in heaven, she formed Gabriel’s Giving Tree (GGT) to help families in need on Long Island pay for funeral and burial services after a loved one dies from an opioid poisoning or substance use disorder. Last year, GGT assisted more than 35 families.
“I am definitely not a person who can sit home and not want to find a purpose,” said Phillippe. “There was a time that I chose to work through my blaming, anger, questioning, and resentments over Gabriel’s death. But then I realized I was only hurting myself, and it wasn’t bringing Gabe back. I didn’t want others to go through what our family was going through, so I came out of myself. Everyone in our family was hurting, grieving, and missing Gabriel in our own way. I chose to love them, myself, let go, and do what I needed to do to keep my wound clean. That gave me permission to put my grief into action and service.”
However, while the research suggested that advocacy could be cathartic and associated with healing from grief, it also exposed a “double-edged sword” that “going public” in sharing a family story of substance use death could also have a considerable personal cost.
Larry L., of Wantagh, NY, lost his daughter Lisa to fentanyl poisoning in 2019. He quickly became motivated, turning to several community organizations in his area that were focused on educating young people and preventing further tragic losses from overdoses. Larry soon became a passionate, vocal spokesperson on the issue of the fentanyl crisis, often being featured on news stories, radio shows, and in print media.
But Larry’s surviving daughter was not happy to see the family’s history being aired publicly.
“It bothered my older daughter,” Larry said. “She said she didn't like the idea that I was on television. She said that having her coworkers mention it triggered her. We did have a lengthy conversation, and she shut us out for a while because of this, but I made it clear that I'm passionate about this, and I'm going to keep doing what I'm doing.”
Father and daughter have since made peace on the difference of opinion.
Godspeed concluded, “Grief knocks at the door when you least expect it. Now, you can close the door in grief’s face, but grief still stands outside your door. And when a window opens, grief will find its way in. We welcome it in because we can't get away from it. And this is where purpose can come in. While I am grieving, while I am still in the conversation with grief, and I am still in the conversation with my child.”
“Now I know not to get stuck in the pain but to learn from it,” Phillippe said. “It has taught me to see with eyes of compassion and love. It has shown me that families need to share stories and talk about their loved ones, to find their tribe that understand, realize that our loved ones want us to laugh, listen for signs, remember who they were, to plant trees and watch them grow.”
Carole Trottere knows grief. Her only child, Alex, died on April 8, 2018, at the age of 30 from fentanyl poisoning.
