Denise Cullen made a deal with her son, Jeff, when he was young. If he waited until he was 25 to get a tattoo, she’d pay for it, whatever he wanted. It was a way of keeping him from getting something he’d later regret.
Jeff took her up on the offer and, when he turned 25, excitedly began the multistep process of getting an elaborate angel tattooed on his side. Midway through the work he revealed to his mother that he was doing it to honor her, and he planned to add the words “Mom” to the design or perhaps the image of a child kneeling at the angel’s feet.
“Of course, I was beyond touched, but I talked him out of it. I said, ‘Girls are going to think you’re weird! You don’t need to have Mom on it,’ ” she said, laughing at the memory. “If that’s what that means, you know it, I know it and that’s all that matters. So what he started telling people was that he had an angel on his side.”
Today, seven years after her son’s death from a drug overdose at age 27, Denise remains the angel steadfastly at his side through her work as executive director of a nonprofit that includes two sections: the support group Grief Recovery After a Substance Passing (GRASP) and Broken No More, an education, information and advocacy group that champions more enlightened drug policies and better public awareness of what addiction means. In these roles she not only keeps her only child’s memory alive while helping others who have experienced similar loss, she works to prevent more tragedy.
Tackling the Addiction Stigma
Losing a loved one to substance use brings a special kind of pain, Denise explained. “We call it disenfranchised grief. It’s grief that is not accepted by society.”
That’s because addiction is still written off by many as self-indulgence, a lack of willpower, or a moral failing. As a result, instead of getting the support and sympathy so helpful in dealing with loss, those left behind after a drug-related death often find themselves adrift, isolated and judged. “We are stigmatized,” Denise said. “We must have been bad parents, our kids must have been bad.”
The reality, however, is that addiction is not a character flaw but a complex and chronic disorder that changes the brain and can make continued substance use seem as essential to survival as air. Loss, when it comes, is especially painful because it so often follows years of suffering and struggling by the addicted person and those close to him or her.
It’s why support groups that can provide understanding and compassion are so necessary, explained Denise, who along with her husband, Gary, turned to GRASP a few months after their son’s death. There they found what was then a small community that understood the special nature of their bereavement. As the GRASP website explains: “Some may ask: ‘What difference does it make? Help is help. Sympathy is sympathy.’ Those who know, will answer: ‘The difference is in the faces of other parents.’ ”
Not long after the Cullens joined the group, the original founders, Pat and Russ Wittberger, decided to retire from the work and the Cullens took the helm, with Denise becoming the executive director and Gary staying more behind the scenes as chief financial officer. Their involvement led to an important advocacy supplement, Broken No More, which now acts as the main umbrella organization under which GRASP falls. “We have separate websites for GRASP and Broken No More because some people are interested in the grief part but aren’t interested in advocacy and drug policy and harm reduction efforts. So we wanted to keep it separate for them and not make it too confusing, so they could choose to be involved as they wanted,” Denise explained.
Both sides of the organization are increasingly busy, Denise noted, with GRASP membership, sadly, growing dramatically along with the nation’s overdose epidemic. There are now more than 100 GRASP chapters throughout the U.S. and Canada helping those struggling with a loved one’s death express their loss and gain strength to carry on. And the groups’ Facebook pages draw participants from across the globe. Yet if she had to focus on only one part of her work, Denise said, it would be Broken No More “because until we stop the failed drug policies and introduce better treatment and harm reduction processes, the grieving is going to continue.”
The nation loses 120 people daily to overdose, she noted. “If we were losing them to any other reason, people would be screaming in the streets.”
Changes for the Better
In the years since her son’s death, Denise, whose background is as a licensed clinical social worker, has seen much to encourage her in the nation’s evolving response to addiction.
For example, medication-assisted treatment such as Suboxone, which can help blunt relentless cravings, is becoming easier to access and is now offered as part of many addiction treatment programs. Life-saving naloxone, which can reverse the effects of an opioid overdose, is increasingly being made available to first responders and to family and friends of those struggling with an addiction to heroin or prescription painkillers. And political efforts to revamp the war on drugs and move toward treating addiction as an illness rather than a crime are gathering steam.
Broken No More has played a part in reforms, Denise noted, helping to get 911 Good Samaritan laws passed in California, for example, which provide certain protections from prosecution for those who seek emergency help for a person who is overdosing.
And then there are the slowly crumbling stereotypes. “When Philip Seymour Hoffman died is when I really noticed a shift in people’s attitudes and how it was being covered in the news,” Denise said. “You’ll still find comments after an article with people saying, ‘They’re just junkies. Let them die. It’s their choice’ — all that horrible stuff. But it’s less than before. Attention is being paid not just by politicians but by everyone, and I think it’s because so many people are being touched, so many people know someone who is either struggling with an addiction or have lost someone they know.”
We’ve come a long way, she believes, “but we need to hurry it up because we’re losing a whole generation of people.”
A Fairytale Life’s Tragic End
The Cullens’ loss came on Aug. 5, 2008, when Jeff took a combination of morphine and Xanax after six months of abstinence and never woke up.
“This was a kid who was very loved. He had a huge extended family and many friends, was popular, athletic, good looking, bright, and he was funny. He had every advantage, but not in a way that he was overindulged. He used to say he had a fairytale life.”
But Jeff also struggled with attention-deficit disorder, which made school and following through difficult. “He self-medicated, I believe. … He told me at one point that when he smoked pot, he felt normal for the first time.”
He was admitted to his first 30-day adolescent treatment unit at age 14 and spent his 15th birthday there, she said. It was the start of a 12-year struggle. “He did every drug there was.”
Nine different treatment facilities didn’t help. “Not one even mentioned medication-assisted treatment,” she said. When he died, he was on a waiting list for a county-mandated treatment bed to open up, and she believes he combined the morphine and Xanax in an attempt to avoid a return to heroin.
If there’s one thing she wishes people understood about addiction, it’s this: “It’s not a choice and it’s not fun. … People don’t use drugs with the intention of becoming an addict. They don’t want to live this way.” Her son’s self-esteem plummeted as he struggled over and over to stop. “That’s where the name Broken No More came from,” she explained. “My son used to doodle that on things. He thought he was broken.”
In her role with the organizations and as a speaker, Denise takes on the misunderstandings about the nature of addiction and spreads the message that every life is worth saving. “Because of their disorder, they do things that they wouldn’t normally do. But if you had diabetes and you eat the wrong things or don’t take your insulin, is the doctor going to say, ‘I’m sorry, you’re just not being compliant, so we’re kicking you out of treatment’? That does not happen. People embrace you and they try to bring you back in and they try to help you. That’s what we need to do with people with substance use disorder, and not treat them like they’re not worthy.”
Finding Comfort Through Memories
In the dark days after their son’s death, Denise and her husband knew they needed support, and through GRASP and Broken No More they found it — and more.
“The thing that’s healing is to get involved. Because then you’re helping someone else, and that always helps you. … And the other huge thing about that is it gives your child’s death meaning. My son touched so many people and he’s still so loved and he’ll never be forgotten by those who knew him, but with this, he’s living on through the work that we are doing in his honor.”
And what of those fortunate enough to be on the outside of such tragedy? What should they know if they want to help someone who has lost a loved one through drugs?
Reach out, Denise advises. “People don’t want to ask for help. They don’t even know what to ask for. You’re in shock for a long time. I was in shock for a year. That’s why the second year is so much harder. The first set of holidays and the first birthday, you’re still thinking they’re going to come home in this weird way. And then after the second year, it’s like, ‘This is really real.’ And that’s also the time when other people start to move on. But we don’t move on.”
For Denise, one of the most moving moments of support came from a stranger in the grocery store. The woman had noticed the tattoo on Denise’s upper arm — a tattoo created after her son’s death by the same tattoo artist responsible for Jeff’s angel. It includes a heart, angel wings and two number 27s, signifying her age when Jeff was born and his age when he died.
Denise explained to the woman that it memorialized her son. “And this little lady said, ‘Was he sick?’ And I said, ‘Yes, he was. He was addicted to drugs and he tried and tried but he lost.’ And she just hugged me in the middle of Ralph’s.”
No perfect words are needed. Instead, comfort is more likely to come when those who have experienced a loss are allowed to talk and remember. That’s why her tattoo is on her bicep, Denise explained, where it can be seen and spark a conversation. “People think it’s going to upset you to mention their name. I think it was Elizabeth Edwards who said after losing her son in an accident, ‘All you’re reminding me of is that you remember him. You think I’ve forgotten my son died? No.’ Being able to talk about them and encouraging family and friends to allow you to do that, or to share a memory out of nowhere, to acknowledge the day they died or their birthday — that’s huge for us. It’s the greatest gift.”
GRASP can be found at grasphelp.org and Broken No More at broken-no-more.org.
By Kendal Patterson
Follow Kendal on Twitter at @kendalpatterson