How one mom is turning her grief into advocacy
Petra Schulz says that after losing her son Danny she decided to be open with her story in order make a difference for other families affected by addiction.
As a child, Danny Schulz was the kind of boy that was always making friends with kids that no one else wanted to play with. He loved cooking; his first dish was an apple strudel that he made with the help of his grandma.
He eventually died from an accidental fentanyl overdose when he was 25, after a battle with addiction to opioids.
“Danny was in recovery when he took what he thought was one more pill,” says Petra Schulz, co-founder of Moms Stop the Harm, “He thought it was a fake OxyContin but it was fentanyl. This was before fentanyl was in the news, before we had any health warnings.”
Danny’s story is not unique. The opioid crisis continues to have a devastating effect across Canada with over 4,000 Canadians losing their lives to an overdose in 2017— up 36 per cent from 2016.
The term opioids includes drugs such as morphine, OxyContin and heroin. These drugs are highly addictive and used medically for pain relief. Fentanyl, which killed Danny, is a highly potent type of synthetic opioid, estimated to be 50-100 times stronger than street heroin.
After losing her son, Petra says she, “made the decision to be open about his cause of death.”
Not even his grandparents knew about his struggles with addiction up until that point. But Petra knew that she wanted to share his story in order to protect more families from experiencing such a devastating loss.
STIGMA AND SUBSTANCE USE
Addressing the stigma attached to substance use is important, because when it comes to opioids, stigma kills.
Petra says many people who use opioids, “hide because of the stigma and shame attached to substance use.” This can be deadly if an overdose occurs and no one is there to help.
Much of the negative stigma is associated with the individual struggling with addiction, however, their families can be affected as well.
Although Petra says that while her circle of friends has been supportive, she’s faced her share of questions like:
“Have you ever asked yourself what you did wrong?”
“Danny had choices to make and he made bad choices, why do you blame everyone else?”
What many don’t understand is that addiction is not a choice, but that there are underlying reasons for the person's problematic substance use, most often mental health issues or trauma.
“There’s a lot of social isolation that is built through the stigma. We pull away from our friends, [because they] don’t understand us, and we often get blamed for the situation that our kids are in.”
LACK OF SUPPORT FOR FAMILIES
The stigma associated with substance use sometimes means that the families of those battling addiction, don’t receive the same support as families affected by less stigmatized illnesses.
“These aren’t ‘casserole diseases,’” says Dr. Rebecca Saah, assistant professor at the University of Calgary, who spoke during a panel discussion called How Can Communities Support Families Affected by the Opioid Crisis? held in Edmonton in October 2018.
“When your child gets a diagnosis of cancer or another serious chronic illness, people rally around you.”
“In cancer care, when you get a diagnosis, you are assigned a patient navigator to help you navigate the complex series of appointments and various specialists that you need to deal with your illness. It’s often not the same for addiction.”
Petra says a lack of help with navigating the healthcare system can make things extremely difficult for families. They can also be shut out of treatment processes, going weeks without talking to their loved one, and they sometimes don’t have any idea of where their loved ones are in their recovery process when they return to their families.
She says that one way of supporting families would be providing help with navigation, offering thorough information about harm reduction (such as naloxone kits) and consistently following up with families and loved ones.
“If somebody is in an emergency room, or is taken off by an ambulance, [medical professionals] have to follow up and say ‘where is that person? What do they need and why did this event happen?’ We have to have treatment on demand so that when our loved one is ready, they can get them in somewhere.”
What this boils down to is a meaningful integration of the people with opioid addictions and their families when it comes to the systems meant to treat them.
FAMILIES FILLING GAPS IN THE HEALTHCARE SYSTEM
Ultimately, these gaps left in the healthcare system are filled by groups like Mom’s Stop the Harm (MSTH), which Petra co-founded in 2016.
Mom’s Stop the Harm is a network of families in Canada who have been affected by a loved one's addiction.
Leslie McBain, another co-founder of MSTH, says that traditionally families have been excluded from health care decisions made for their loved ones. She argues that if progress is to be made, this needs to end.
“Those of us affected know that we the parents, the families— are the most valuable and the most invested partners that the health care system could ever hope for,” she said at the Edmonton conference.
“We know… the challenges, the gaps, the stigma, we know about [not having] support after detox, rudeness in the ER, police brutality and prejudice, [and the lack] of treatment for mental health problems.”
She wants the government, along with healthcare providers, to recognize that families are an invaluable, no-cost resource to the process, and that their inclusion will be part of the solution that will help save lives.
“For too long, we have been relegated to watching from the sidelines as life-defining decisions are made and we are left to pick up the pieces when addiction treatment doesn’t produce the hoped for results, or is just not available.”
TAKING A STAND
There is a unique grieving process when families lose a loved one to substance use. Those affected can sometimes feel like they are facing their grief alone, like they have some responsibility in their loved one’s death, or can even feel ashamed to bring up their loss around less understanding friends and family.
When Danny first died, Petra felt as though she had no one to talk to who would could understand what she was going through. That’s when she decided to reach out to Lorna Thomas and Leslie McBain.
She found their stories, remarkably similar to her own, through the media. From there, the three would go on to form MSTH.
“[It was] the first time since Danny died [that] I talked to other people, other than my own family, who knew what it was like,” says Petra. “That was powerful. We all wanted to stop this and make a difference.”
Sharing their stories was just the beginning.
Together the group — along with around 600 families who have joined since its formation — advocate for harm reduction measures like supervised consumption sites, better access to treatment and decriminalization.
Although their stories have proved to be powerful, they are just the beginning.
“There are still a lot of people that are too ashamed and they are grieving in silence. If you don't talk about it, people don't get the help they need,” says Petra. “If you don't talk about why people use, what's troubling them, how we can help them?”
The group has made a lot of progress, but, at the end of the day the pain of their loss doesn’t go away.
It’s been four and a half years since Danny died. At the time of his death, there were 120 people in Alberta who had also died from a fentanyl overdose.
In 2017 this number increased with 687 Albertans dying from accidental fentanyl overdose. As long as people continue to lose their lives, Petra says she won’t stop fighting.
“Every person is somebody's someone, they are not a number. They are someone who is loved and we have to fight to keep them alive.”
Even though Petra has made a lot of changes in regard to raising awareness about the opioid crisis, she sometimes still struggles without her son who she lost to fentanyl overdose.
Petra Schulz holding a picture frame containing images of her son Danny, who lost his life to an accidental fentanyl overdose in 2014. (Photo: Holly Maller)
Petra Schulz standing with MSTH members Deb Watson (left) and Angela Welz (right). (Photo: Holly Maller)