October 25th, 2016
“I’m glad I made the salad before I found out,” came my first nonsensical thought after I got off the phone. “But I wish I had gotten a manicure.”
It was 6 am and I had just gotten off the phone with my mom. My uncle had just died, after a long and difficult struggle with prescription drugs, heart disease and stroke.
His wife found him when she returned from a trip to visit their adult son with her daughter. They never had a chance to say goodbye. Though he had been ill and had recently had to have cardiac surgery, he had been doing well.
I had only just joined a Facebook group for people who have lost loved ones due to drugs, mostly overdoses or drug mixing. When I asked to join, I told the administrator about how I’ve lost several family members, but how most of my grief comes from the people I work with.
I’m a researcher and an activist. I’m the founder of Philadelphia’s only open SMART Recovery meeting, an active member of HAMS (Harm reduction, Abstinence and Moderation Support), and I’m the harm reduction epidemiologist for Families for Sensible Drug Policy. I’m working on a PhD at a major medical university in Population Health, focusing on harm reduction approaches to people who use drugs when they present in the health care system. I volunteer at a clinic called JeffHope, where we partner with the local needle exchange, Prevention Point, to provide free medical care to people who use drugs and don’t have homes.
So every week, I talk people through alcohol tapers, give clothes to homeless people who use heroin, and counsel numerous family members of people who are suffering from a bad relationship with a substance.
I’m supposed to be good at this kind of thing.
My uncle, who I’ll call Jeff, passed away last month after a 30-year-plus difficult relationship with legally prescribed opioids. His wife and daughter had been visiting their son in Florida. His wife came home to find him on the floor.
Jeff had numerous health problems, many of which were under-treated because his doctors often could not get past his drug use. He had a stroke at 53, multiple heart attacks, and had to have heart bypass surgery when painkillers would no longer work because of his long history with opioids.
“Were you close?” my best friend asked when I texted him the news.
I wish people wouldn’t ask that. It seems to be ranking tragedy—like if I wasn’t close to him, it wouldn’t matter. I wouldn’t have the right to grieve.
No, we weren’t close. In fact, my mother was estranged from her baby brother–he was 11 years younger—for a long time, and I had never gotten to know him. The last time I saw him I was applying to college—and I graduated 20 years ago.
I follow his son and daughter on Facebook, and I have “liked” numerous pictures of his 18-month-old grandson. But no, we were not close.
The closest I’ve come to him in the past 20 years was a few months ago, when he had a terrible opioid relapse. When he was in the hospital, the family was trying to decide what to do. They considered sending him to an inpatient rehab program that I know to be brutal and demeaning. I objected vehemently to my mom, but I’m not sure if my protests ever got to anyone in Jeff’s immediate family.
We are Southern and avoid conflict at all costs. I may be a PhD researcher in harm reduction, but I’m still a baby to that side of the family—after all, they haven’t seen me since I was out of patent leather white Sunday shoes.
After hearing the news of Jeff’s death, I posted on the Facebook grief group. Immediately, I got tons of love and support, the kind I am in the habit of giving strangers every day when they post pictures of the beautiful children they’ve lost.
I felt a sense of community unlike anything I’ve ever experienced. These people understood.
My uncle was not a collection of the drugs he’d done or the diagnoses he’d amassed. He was a real person: someone’s husband, father, brother, and now grandfather.
No one in the group asked me if we were close. They know it doesn’t matter. When it hits your family, it doesn’t matter if you haven’t spoken in years. You question everything. You wonder: Was there something I could have done? You wonder: Could this happen to me? To my child?
I bought my mother’s plane ticket so she could preside over the funeral. In addition to being, like me, a harm reduction activist, she’s conveniently an ordained minister and a trained trauma chaplain. I think about volunteering her to do the funerals of children who die of overdose: She would never judge, and brings the kind of unconditional support that parents need at these times. In times of crisis, she can hold it together like no one I’ve ever known.
I didn’t tell anyone at work. I didn’t want to call attention to myself on a new job, one that is highly technical and requires absolute concentration. I didn’t want anyone to question if I was fit to work that day. And frankly—and, I realize, shockingly for someone whose life is devoted to this field—I didn’t want my new colleagues to associate me with something so stigmatized.
“I don’t do the drugs, I just study them,” I often say. And it’s true. A child of the Reagan years, I’m terrified of illegal drugs. I wouldn’t take opioids after surgery, even though I know the stats on how few people get addicted. I know that drugs don’t cause addiction, but I’m scared nonetheless. Societal programming runs deep.
The next Monday night I had one of my PhD classes. A pharmaceutical researcher in my class described the algorithm she had designed to identify “drug seekers” early on. “We can catch them before they become addicts,” she said, and I cringed.
I never use the term “addict.” In fact, like my hero Kenneth Anderson, the founder of HAMS, I consider it hate speech. A person is not defined by the worst episode of their life. The content of our bloodstream is not the content of our character.
So I always challenge “addict” if I hear it in social circles, but this time, for better or worse, I kept my mouth shut. I want to develop a program to teach health care professionals harm reduction approaches to people who use drugs when they present in the acute care setting, so that this doesn’t happen again. I couldn’t afford to alienate my classmates on day one.
But I thought to myself, “My uncle was the ‘addict’ you were trying to ‘catch.’ What would you do if you caught him?”
Abstinence never worked for my uncle, despite many attempts. Yet he raised two successful children and was married for over 30 years to a woman who loved him. He has a beautiful, smart baby grandson, whom I’m so grateful he got to know. He blessed many lives with his presence.
In a saner world, he could have had his medications without losing his job, becoming bedridden, and nearly losing his family. He could have gotten healthcare for his other health problems without experiencing the stigma associated with using drugs. He could have gotten help to manage his drug use safely and therapy that focused on why he used drugs, not just on getting him to quit.
He could have lived beyond the age of 60.
Read more from The Influence:
Online, I look every morning at pictures of the beautiful children my friends and comrades in harm reduction have lost. Every day before I go to work, I have a little cry. Then I splash my face with cold water and go out to fight another day.
Losing Jeff wasn’t supposed to happen to me. It wasn’t supposed to happen to my family. It wasn’t supposed to happen to the families of any of those who are lost—often not to drugs, but to the stigma-based reactions and policies that make drugs so much more dangerous than they otherwise would be.
Until we recognize that some people will always use—and stand up for their right to be healthy, productive, connected and empowered members of society all the same—we will lose more brothers, sisters, daughters, sons, aunts and uncles.
“Pray for the dead and fight like hell for the living,” said Mother Jones.
The day after losing Jeff, I facilitated my SMART meeting, which I share with a young woman who has overcome both heroin addiction and Type 1 diabetes. As she bravely advocates for her homeless and still-using friends, I see in her the future. When I start to feel my courage failing, I think of her, and I get back to the barricades.
If you pray, and if you have a moment, do say a short prayer that my uncle can rest in peace, and that his family can go on to build a new life. They are proud of his life, and I am proud to be his niece.
Goodbye, Uncle Jeff. I never got to know you, but I’ll see you in the face of every person I am able to reach.
April Wilson Smith is an epidemiologist who lives in Philadelphia. She was previously a union organizer for 18 years. Her last piece for The Influence was “Overcoming Problems With Substances Is Great—But ‘Recovery Month’ Rubs Me the Wrong Way.”