Memorial candles (AP Photo / Ahn Young-joon)
When the drugs finally won, and Liz Perkins planned a funeral for her 30-year-old son, there was never a question in her mind about what the obituary should read:
"John M. Perkins died on Thursday, May 5, 2011, at Christiana Hospital following a long struggle with addiction."
Liz Perkins knew people would pass judgment on both her and her son when they read those words. She knew the societal stigma she could –– and did –– face. She didn't care.
"You read every obituary and it says 'died suddenly, died suddenly, died suddenly' and people who have been dealing with this issue, we know the code," said Perkins, a Delaware resident. "This needs to be published so people read it and realize it's happening and see how many young kids we're losing. It's the only way there can be change."
Obituaries have long employed a secret code, a shorthand to mask causes of death that survivors found embarrassing. It's not openly discussed, but it's easy to find. When HIV/AIDS began claiming lives in the 1980s, young men were said to have simply succumbed to "pneumonia."
Today, the codes –– "died at home" or "died suddenly" or simply "passed away" –– come out when there's a drug overdose or a suicide. People like Perkins want to change that.
"Some of his friends came up to me and asked why I did (put addiction in the obituary). They asked if I was angry with him. No. I was never angry at him," Perkins said. "I did it because of his struggle. People needed to know he was a good kid and this just happened to him. Pay attention so it doesn't happen to your kids."
Tessie Castillo, communications and advocacy coordinator for North Carolina Harm Reduction Coalition, said the Perkins family did the right thing.
"The stigma is part of what contributes to the problem," she said. "There's such denial: 'This will never happen to my family.' But as long as it's in the shadows, we'll never do anything about it."
She advises the families she works with to try to not feel shame, even if society is trying to "make you feel guilty and that it's your fault." It's not your fault, she said. And it's not the fault of the person who died.
Castillo said one way to cope is to take positive action. That's what Tyler Keister's parents did after their 24-year-old son's death. Tyler, they acknowledged in his obituary, "fought a long, hard battle with addiction, which ended peacefully on December 23, 2012."
That surprised some people. Tyler was ashamed of his problem and kept it hidden from many who loved him, his parents said. He didn't want to let them down.
And Tyler didn't "look like an addict." That's the same response people had when Glee star Cory Monteith died from a drug overdose in July. The seemingly clean-cut, smiling man on the covers of popular magazines had a drug problem?
Jeanne Keister said she could see the surprise on the faces of legislators when she and her husband, joined by other mourning families, went to the Delaware state capital to advocate for a 911 Good Samaritan law. Since passed, the law gives legal immunity to people who call for help when someone is overdosing.
"We stood before the Senate and we all looked normal. That really made an impact," said Jeanne, who with her husband has since founded an advocacy group called atTAcK addiction. "People think those who overdose are throwaway people. They're not."
In a video interview for Stand Against Stigma: Changing minds about mental illness, Susan Guiton of California said she only realized suicide was a dirty word when she read her nephew's obituary.
"The obituary said he 'died at home,'" Guiton said in the interview, which can be found at www.co.shasta.ca.com. "We have to stop shoving it under the rug. There are more teenagers contemplating suicide, and the stigma can be a big hurdle."
When Greg Humes died at age 24 in May 2012, his obituary read "passed away suddenly." It didn't occur to his family to mention his addiction issues at the time, Dave Humes said.
"I like to believe that if I had rationally thought about it, I would have put 'drug overdose' in the obituary," said Humes, of Delaware. "It's a disease. You're not embarrassed to have cancer."
Mental illness, too, is nothing to be ashamed of, said Lisa Schenke, whose 18-year-old son Tim was killed when he stepped in front of a speeding train in 2008. She recalls her last conversation with her son: She wanted him to stay home. He wanted to go out. As he left the house, he said he might not return.
Her last words to him were, "Then don't." That night, Tim walked onto the tracks half a mile from his New Jersey home.
While Tim's obituary didn't mention his drug issues –– it was written by the funeral home –– Lisa Schenke didn't try to hide her son's problems. Less than two weeks after his death, she wrote a letter to the local paper detailing Tim's addiction issues and his fight against depression.
"My son was sick," said Schenke, author of Without Tim: A Son's Fall to Suicide, A Mother's Rise from Grief. "I wasn't trying to hide it. I wasn't ashamed of it."
Still, the negative response to her letter made her feel angry and guilty. People blamed her family because both parents worked. Some people dismissed Tim, who had received a $100,000 scholarship to Drexel University, as just another loser drug user.
But Schenke still believes speaking out is the right thing to do. Tim, she said, was an intelligent boy, a member of the Key Club and the National Honor Society. He enjoyed playing soccer. He wasn't a loser. He wasn't just another drug user.
"I wish it didn't happen," she said, “but my son was sick and made an impulsive and rash decision."
Natalie Pompilio is a freelance writer based in Philadelphia. Her lifelong love of obituaries raised eyebrows when she was younger, but she's now able to explain that this interest goes beyond morbid curiosity. Says Pompilio, "Obituaries are mini life stories, allowing a glimpse into someone's world that we're often denied. I just wish we could share them with each other when we're alive."