Losing Jeff: Why I'll Mourn My Uncle Who Used Opioids, Even Though We Weren't "Close"

Oct 25 2016

Losing Jeff: Why I’ll Mourn My Uncle Who Used Opioids, Even Though We Weren’t “Close”

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:

Women Who Use Drugs Need Gender-Specific Services—My Own Life Proves It

“A Family of Drug Users”—Meet the New Leader of the Harm Reduction Coalition

Follow us on Facebook and Twitter, and sign up to receive daily stories to your inbox.

 

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.”

  • Caseycc

    April Wilson Smith-a true warrior for substance use disorder & harm reduction! From a warrior mom with a SUD son early in recovery-6 months. But that doesn’t & will never define him or anyone with the disease! You move me to bring SMART Recovery to my community. The closest meeting is an hour away, too far. I’m quiet, shy & have ADD & my family avoids confrontation & likes these matters swept under the rug (like mental health issues) & not spoken about in public. Against my heart I declined to do a television interview about my Narcan use (harm reduction) because of the older family member values. But after that I decided that my therapy is championing harm reduction because it enabled me to save my son personally twice & the EMT’s once. Because he is alive he was able to go to rehab & to be in RECOVERY. A dead person CANNOT RECOVER. I’ve done three speeches about my families struggle along with my 19 yr old daughter “the forgotten sibling” & my personal use of Narcan on my son at events promoting harm reduction (parents, medical professionals, advocacy etc) and while the speeches were nerve-racking for me & I’m sure I was all over the place & a basket of nerves (my daughter is the articulate one)-perhaps they were my entryway into maybe believing that I can lead a SMART Recovery meeting in my area. Not for my son, he’s out of state, but for others like him who struggle with the 12-step meetings. To quote so many others that have used the phrase “if not me, who; if not now, when”… Thank you for re-inspiring me!

  • Silver Damsen

    It is difficult to know when it is most productive to try and force someone to see that the AA abstinence way of doing things does not work, and, in fact, kills. Studies indicate that those who have a truly bigoted opinion that already defies logic and the evidence, will only become more bigoted if they are pushed to try and see the facts.

    I would say that all kinds of activism are useful. Yes, it is helpful to have someone screaming that AA’s 12 Step Program is worst form of total abstinence and does not work for the majority, and even that AA is a religious cult, even if it doesn’t actually persuade any of the immediate audience. I can also see the point of slower, steadier pressure.

    I think the slower and steadier is only a problem if this faction attacks the more vocal one for alienating people. From what we know about activism works, trying to silence the most vocal and militant (as long as militancy doesn’t involve armed insurrection) is not a good idea.

    The choice of what to do at any particular incident is difficult to see into the future. Everyone has their limits though and sometimes activists can’t or shouldn’t push when they know that in that particular instance on that particular time they are not likely to get positive results.

    I’m in favor of moderate and less moderate sides working together in Harm Reduction. I suppose that is the most current term to try and avoid saying Anti-AA without actually saying Anti-AA. It used to be “evidence based’ and then somehow studies were distorted to say that the religion (or more likely pseudo-religion) of AA was “evidence based,” so now that terms can no longer be used as the code for non-12 Step programs. The problem is that there are some total abstinence alternatives to AA, and “harm reduction” doesn’t usually mean “total abstinence.” So it is slightly confusing but I know the problem is that AA still dominates the treating industry so coming out flat out and saying that it is the AA abstinence program that is the most dangerous and that other abstinence programs can work can make it harder to get published professionally unless one is already a known name. But yet is useful to make this point. I say this because SMART is a total abstinence program. Even if it can be used for moderation that is not how it is designed to be used.

    I’m hoping that the shift continues, and fewer and fewer people die because of the misinformation of AA every year, and that one day that it is common knowledge that the problem is the AA abstinence program and its emphasis on “powerless” and “blaming the victim” that harms people. But in the meantime this article is a slow and steady step in the right direction.

  • Silver Damsen

    10 Major Alternatives to AA
    (circa 2016)
    Free Self-Help
    hamsnetwork.org
    smartrecovery.org
    sossobriety.org
    womenforsobriety.org (includes men for sobriety)
    lifering.org
    moderation.org
    reddit.com (entirely online)

    Help involving paid professionals
    rational.org
    sinclairmethod.com (for alcohol)*
    ibogainealliance.org (for opiates)**

    Sinclair method and Ibogaine use medication to rewire the addiction pathways in the brain
    *most doctors can prescribe the medication Naltrexone, but Goodmancenter.com is a treatment center specifically
    based on the Sinclair method.
    **aftercare is recommended, such as genesisiboganiecenter.com, holistichousevegas.com, and medicineheartrecovery.com