Words Can Lead the Way…

From The Globe and Mail – September 24, 2022.

They, too, can act as a form of harm reduction.

When he was a teenager and just beginning to smoke pot, I took my son Holden for a car ride through the Downtown Eastside of Vancouver and pointed out drug users crouched or sleeping on the sidewalk as a cautionary tale – a parenting tactic.

“Look at those people,” I said. “What happened to them?” I didn’t know then that by openly judging drug users, I was throwing a handful of fertilizer on a notion that years later might have prevented my son from asking for help when he needed it.

When Holden died of an overdose in the summer of 2015, at the age of 21, I collapsed at the feet of the police officer whose horrible job it was to deliver the news. Then I vanished.

The person I used to be doesn’t exist any more. I remember she was often in motion. She was usually talking – handing out her opinion like free pamphlets at the train station. Now she is more often the quiet lady in the corner – the one who sneaks out of parties early without saying goodbye.

Oh, I look very much like her: I live in her house and wear her clothes, I water her plants and answer her phone, but inside there are mechanical cuckoo-clock parts running the systems. She is my doppelganger; this is the invisible damage grief does.

In April, 2016, nine months after Holden died, British Columbia’s provincial health officer Perry Kendall declared a public-health emergency in response to the sudden spike in drug overdoses and deaths. Between January, 2016, and December, 2021, there have been a total of 29,052 apparent drug-toxicity deaths in Canada, a figure widely believed to be underreported.

What is also not measured are the hundreds of thousands of us left behind – parents and loved ones of those who have died of opioid overdose, mourning all of the beautiful hearts silenced in mid-beat.

I wanted to be able to say, seven years after Holden’s death, that I have finally realized that “everything happens for a reason.” But that would be a lie. Sometimes there is no “reason” for what happens. Sometimes life is just stupid and terrible, and there is no making it right.

People told me then that time would heal all wounds. But time, the alleged healer, has quiet-quit on me; I am not better. When the wind of memory blows and a song or a smell flints a flash of Holden before – Holden chomping a burger, Holden playing his guitar, Holden riding his skateboard – my heart contracts.

Even during moments of outward joy – dancing at a dear friend’s wedding or paddle boarding in a spectacular bay on Hornby Island – the shock waves of Holden’s absence reverberate inside my body. His absence is now his presence.

Sure, I can function. I grow my own spinach and meet friends for tea. I work, though I’m still not able to manage full-time. Sometimes I even sing in the kitchen. Twice a week, I go to the gym where I lunge and press; anyone watching would think I have healed, that I am “back to normal.” In the past, I would have made that mistake, too.

But then there are the other days. The silent mornings and sad afternoons that nobody other than my husband and daughter sees. The ache returns and the muscles it takes to be an upright human have atrophied. On those days, I am nothing but a sack of emotions hanging on a peg.

Even after seven years, a dark shadow comes over me at random – takes my hand and guides me to my bed where I lie paralyzed, and do nothing. Inertia makes an inanimate object of my body. And I wait. I have learned there is nothing to do but wait. I lie under the weighted blanket of Holden’s loss and wonder what I could have done differently. I’d know better now.

When I took him to see the Downtown Eastside, a neighbourhood that has in the years since only become more tragic, more forsaken, I’d barely heard the term “opioid crisis.” At the time, I was all about telling and making rules – about being right, and better. Now, I’d ask questions. Now, I’d listen.

A few days after Holden died, the Vancouver coroner, Bilal Waheed, called to share the initial toxicology screening results with us. I sat hunched on the edge of our bed with my eyes closed while he offered his solemn condolences over speakerphone – a kindness I later realized he’d likely already extended several times that day.

In fact, the morgues in Vancouver were so full because of the sudden surge in overdose deaths that Holden’s body had been transported to the neighbouring suburb of Burnaby. Dr. Waheed confirmed that Holden had died of a suspected overdose – heroin and alcohol, tarnished with traces of other street drugs – that overwhelmed his cardiovascular system.

I wasn’t surprised. I mean, what else could stop the heart of a healthy young man full of jokes, hugs and songs? I was devastated. I was also embarrassed, and ashamed. I was afraid of what having a drug-using child said about me as a parent. My son had died of an overdose – I was obviously a terrible mother, and somehow, as mothers always are, to blame.

But I could no longer fool myself about living on the higher ground of entitlement and privilege. I was one of those people. A reckoning that lodged a cold brick against my broken heart.

I didn’t want to talk about it. I wasn’t capable of talking much at all, but more than that, I didn’t want anyone to know what had happened. Of course, most people probably guessed – the opioid crisis was just beginning to make headlines. At one point, I caught myself hoping that the full toxicology report would indicate some kind of heart defect meant Holden had died in a more “respectable” manner.

It has taken me a long time to figure out that if I couldn’t admit the truth to myself or to others – if illicit drug use was so ugly in my mind and in the moral judgment of our society – how could Holden have possibly come to me to ask for help?

I don’t know a lot about Holden’s drug use. I don’t think he used regularly. But I do know that once someone is defined as an “addict,” the label seems to erase every other part of their personality. Their charms and positive character traits. Their value. An “addict” is a scourge, a blight who obviously cannot be trusted.

These mistaken beliefs can include the faulty ideas that people with substance use disorder, or SUD, are dangerous, incapable of managing treatment, or at fault for their condition. That SUD is a moral failing instead of what we now know it to be – a chronic, treatable disease from which patients can recover and go on to lead healthy lives.

SUD, like any other kind of illness, should not define a person. If you have been diagnosed with cancer, you are not a cancerite. These are afflictions happening to you and in you; you do not become them. If Holden had thought of himself as a person struggling with an SUD, and it was treated like any other medical issue, maybe he would have been more likely to seek treatment.

I think of the more than 30,000 families like ours and the suffering they endure – the torment, the longing. I wonder how many mothers, fathers, siblings and friends are, years later, still taking to their beds, waiting for the pain to subside, existing but not fully living.

If each one of these deaths represents even just three or four people who deeply cared about them (a very conservative number), what do those numbers actually represent? Ten hockey rinks, a town, a city? We are a growing army of involuntary conscripts – zombies staggering through life – what a waste. Just think about what we could all be doing with our time.

The epidemic of overdose deaths is often talked about in terms of statistics and policy. But I know firsthand about the unseen human impact carried by those left standing, alone in our grief, set apart by the same stigma that isolated our children.

Yet the opioid crisis is everyone’s problem. My best friend knows two other mothers who have lost children by overdose. My yoga teacher knows four families. My story is a personal one, but it has universal implications. And the crisis is not slowing; according to data from the BC Coroners Service, more than 1,000 people in the province were already killed by toxic drugs in the first half of 2022.

In the years since Holden died, I have been extremely fortunate to receive an education. I read widely about the opioid crisis and absorbed as much as I could about how to become a writer. During that time, I wrote a book that I very much did not want to write. I considered trashing it many times, which would have been so much easier.

But if I bailed, if I didn’t open up about Holden’s struggle and what his death has taught me, then I’d be just another person not talking about it. I’d be another person quietly perpetuating the stigma and shame that come along with substance use and misuse and their often-tragic ramifications.

I’ve learned how damaging words, such as “addict,” “dirty,” “clean” and “junkie,” can be. But language shifts and morphs all the time. The words we choose to use often lead the way toward change. While there is still no word for a parent who has lost a child, we now have better and more accurate terms, expressions and pronouns to articulate our distinct qualities while remaining inclusive. I have learned that paying attention to language might be a way to move forward.

There’s been a lot of talk about “ending the stigma.” But what does that mean, and how do we do it? When talking to people with SUD, their loved ones, or your friends and colleagues, use non-stigmatizing person-first language that reflects an accurate, science-based understanding of SUD. Person-first language maintains the integrity of people as whole human beings.

For example, Joe is not an addict. Joe is a super cool guy who plays the trombone, loves his dog and also happens to have an SUD. See, a neutral tone distinguishes the person from their diagnosis. Now Joe isn’t subject to our fear and our judgment. Joe receives eye contact, compassion and care.

Words can lead the way. They, too, can serve as a form of harm reduction. Maybe if we speak differently, we will hear differently. And if we can listen more openly and with less judgment, perhaps we can find solutions. It’s too late for my son, but it’s not too late to change how we frame SUD so that those struggling now might feel loved, cared for and seen.

Maybe they will feel valued enough to ask for the help they deserve.