How an Opioid Overdose Map Helps Grieving Families

By Lynn Shattuck 10/23/17

When I browse the map, I see so many people like my brother. People with big dreams, people who were lovely and loved, people who suffered from the disease of addiction.

Image of Will and Lynn
The author and her brother, Will Shattuck. Image via Author

Beside the map sits a collage of bright faces. Most are smiling, and most are impossibly young. If you didn’t know what you were glancing at, you might feel like you’re scrolling through a 20-something’s collection of Facebook friends.

But everyone featured on the map is there for one reason—because they’ve died of opioid-related causes.

Discovering the Celebrating Lost Loved Ones to the Opioid Epidemic map earlier this year was both comforting and devastating. Comforting, because I wasn’t alone. And devastating because, well, I wasn’t alone.

On March 24, 1999, when I was 24, my phone rang. My mom’s words leaked through the line: Seattle, heroin, coroner, autopsy. For one silvery moment, the dark words swirled around in my mind, unconnected to one another, before they forever collided and I realized what they meant: my only sibling, my 21-year-old younger brother Will, was dead from a heroin overdose.

That phone call bisected my life into Before and After. Before, like most of my 20-something peers, I’d ruminated on dating and career issues. I’d spent an embarrassing amount of time pondering whether to keep dyeing my hair burgundy, or switch to a sleek blue-black, channeling Veronica from the Archie comics. After, I helped my parents edit my brother’s obituary. I combed through his autopsy report, where I learned the weight of each of my brother’s organs. I even spoke to middle schoolers about the dangers of drug use, my loss having converted my shy self into an unlikely motivational speaker.

In those early months of shock and survival, I craved the company of other people who’d lost a brother or sister.

So when my parents and I decided to go to a conference designed for people who’d lost a child or sibling, I was weirdly excited. Finally, I’d be with people who understood me.

But in that circle of bereaved brothers and sisters, I still felt other-than. As we went around the beige and blue hotel conference room, introducing ourselves and sharing about why we were there, I tensed up.

“I’m Kim, and my sister died of cancer.”

“I’m Rob, and my brother died in an accident.”

“I’m Jen, and my little sister was murdered.”

I listened as one after the other, the attendees shared about their brothers and sisters. Their siblings had been killed by a tumor, an accident, a murderer. By something that wasn’t self-inflicted. When I opened up my mouth to say, “I’m Lynn, and my brother died from drugs,” the words tasted metallic on my tongue. With that simple introduction, the only thing the other people knew about my brother was that he’d been a drug user.

They'd only know how he died, and I hated that.

Jeremiah Lindemann experienced similar thoughts after his 22-year-old brother died from prescription drugs in 2007. Like my brother Will and I, Jeremiah and his brother had been very close.

“I considered him my best friend,” Jeremiah says of his younger brother, J.T. “He was good at so many things— I was a little jealous when we were growing up. He was good at sports, music—he was a really good drummer and guitarist. It felt like there was a light around him.”

But when someone dies from drugs or alcohol, it can be hard to explain that light to others.

“If I tried to talk to someone about J.T. afterward, it would turn into a quick conversation. People were pretty dismissive,” says Jeremiah. Sometimes, they were downright insensitive. “I had a former coworker who said, ‘I thought only people who were homeless did drugs.’”

For Jeremiah, the fact that his brother died from drugs was an issue he couldn’t avoid. Deaths from drug overdoses were rising sharply. “I started seeing it in the news so much and seeing all the stats about people dying,” he says.

In 2015, harnessing his skills as a mapping software engineer for Esri, a data mapping company, Jeremiah decided to create a website to map opioid-related deaths. On the Celebrating Lost Loved Ones to the Opioid Epidemic site, families can post a picture and write about their loved ones. Lindemann's aim is to reduce stigma, to literally add faces to the statistics we hear about America’s opioid epidemic, and allow families to honor their children, siblings, parents and friends as the complicated, multi-dimensional universes they each were. 

Jeremiah’s brother, J.T., was the first person to appear on the map. In his picture, J.T. wears a cap, underneath which you can see his bright, slightly mischievous smile and laughing brown eyes. His family writes about how he used to scrawl ideas for song lyrics on napkins, and how he used to hit home runs in little league and “nonchalantly run the bases,” because he’d rather have fun than be competitive.

J.T. Lindemann

J.T. Lindemann

For Patty DiRenzo, whose son, Sal Marchese, died of a heroin overdose in 2010, the map is an opportunity to show her son to other people. “When you lose a child, you want them to still be seen,” she says. When acquaintances ask about her children, she often experiences the stigma surrounding addiction.

“As soon as I say he died of a heroin overdose, they take a step back,” she says. “Like they don’t feel as bad for me. Like they’re thinking, ‘What do you expect, he was a drug user, of course he died!’”

The map currently has over 1,200 faces and stories such as J.T.’s and Sal’s. Browsing it can feel overwhelming, as the opioid crisis morphs from black and white statistics in the news to real people, people who loved Indian food or had contagious laughs and bubbling ambitions; people whose deaths have left parents and siblings, partners, children and friends forever changed. While overwhelming, the number of people currently on the map only represent about a week’s worth of the annual deaths that occur from heroin and prescription drugs in the U.S., says Jeremiah.

Jeremiah plans to continue working to increase awareness around the opioid epidemic. He’s a fellow on the newly established Public Interest Technology team at New America, and has recently launched the Opioid Mapping Initiative, a hub for researchers, technologists, and local government agencies like law enforcement and health agencies to partner to provide better data in order to increase awareness and create best practices. The initiative will include mapping data related to the opioid epidemic, such as where opioid-related deaths are occurring, which regions are administering naloxone, locations of treatment facilities and more. 

If you’d told me when my brother died that opioid-related deaths would have increased exponentially almost 20 years later, I wouldn’t have believed you, just like I wouldn’t have believed that we’d all be carrying tiny computer-phones everywhere. When I browse the map, I see so many people like my brother. Full, multi-dimensional people. People with big dreams, people who were lovely and loved, people who suffered from the disease of addiction.

And so, all these years later, I add my brother to the map. Putting up his high school graduation photo—the one where he seems to be smirking about the fact that he’s donning a jacket and bowtie, the one that feels like it was taken both a lifetime ago but also yesterday—feels bittersweet, but right. On the map, people will know how he died, but also how he lived.

Will was sassy and sensitive. He loved making and listening to music. He had a dark, witty sense of humor, and a unique fashion—for instance, wearing his grandfather's polyester, wide-lapeled shirts from the 70's with jeans cutoff at the shin—that his family loved to tease him about. We miss his humor, his bright blue eyes, his creativity, and so much more.

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Lynn Shattuck is a writer living in Maine. Her work has been recently featured on Elephant Journal, Headspace, and Purple Clover. Lynn is currently working on a memoir about her brother’s death. Visit her on Facebook or at her website.