After losing a father and a brother to substance misuse disorder (SUD), a Kentucky public health worker wants to tear away the stigma of being in the “survived by” category.
by Chelsey Reid
I do not know what makes me compulsive about hot yoga and what made Scott compulsive about shooting heroin. I think about that a lot. The questioning is no longer survivor’s guilt, at least not so frequently, but it is one of hundreds of thousands of things I would give limbs from my body to talk about with him. In so many ways, our wiring is/was pretty similar. Afterall, we are siblings. The apple doesn’t fall too far from the addiction tree.At 32 years old, I’ve come to know the afflictions of Kentucky, my home state, all too well. My family’s cast is proud and colorful, including a mother so tough she’d make Mae West blanche with her stone-like resolve, and my own contributions thus far including a first-generation college sprint and a postgraduate degree.
My family tree can also map the waves of the opioid epidemic. My dad, an alcoholic with opioid substance misuse disorder (SUD), died as a result of complications from misusing prescription opioids when I was 19. He was 51. My little brother, Scott, died from a heroin overdose. He was 23.
That’s the other thing about being in my family — you learn you better live hard and fast because you just might blink and die young.There’s a lot of weird shit that happens as a surviving sibling. Chronic depression, anxiety, and insomnia make for a filling appetizer. It is confounding to think that the only other human with my genetic make-up, who shared the parents, the houses, the domestic violence, and even the good times, is gone. What is equally strange is the stuff that remains despite the injustice of an early death (the sun for one — I had a hard time with the audacity of the sun shining for well over a year after his death). How is it that my rice-filled hippie heating pad that he made fun of is still here, even the memory of the joke, but the comic is gone? Shouldn’t people endure longer than bags of rice?
But back to the weirdness of being a surviving sibling. A person who defined your role within your family is abruptly erased. You want your Mom, because of course that’s what you want when you’re hurting the biggest hurt you’ll ever feel, but she doesn’t want anything to do with you. You’re no longer just her daughter, but a living memorial to the fact her motherhood now includes the spectre of a child missing. Big siblinghood is all name calling, throwing a ball inside and accidentally breaking a window, and standing up for one another, until one of you dies of a heroin overdose. Game’s over. And then there’s the sympathy: the “God, I hope she’s okay”, the “God, is she okay?”, and the “God, how is she that okay, I mean, her brother just DIED”. Not even a funeral will keep a true Southerner from passing rueful judgement.
This weirdness will always be present, breathing next to me, raising questions about telling the story of my past to my present and future self. And while sometimes it’s really, really hard — I’m talking flat tire in the middle of nowhere with a dead cell and no charger in triple digit heat and no water hard — there are other times when it’s comforting, like this tool only I have, pushing me to better understand myself. In this solitary way, it’s exactly like he is still here, challenging me to be the best me (he always thought higher of me than I did of myself.) Even though he’s gone, he’s still fulfilling his role as my little brother.I said goodbye to my brother in the white hallway of a sterile funeral home while he was wrapped in quilts to hide his autopsy marks, my stomach so sharply tight I could feel the skin sinking between my individual ribs. I wasn’t breathing. The hottest, heaviest tears were unrelenting. I held our mom, arms pinned to her sides, with my last strength reserves, because she wanted to move the quilt from the top of his head to see him better (she didn’t understand what an autopsy entails and why he was so precisely blanketed.)
Being a big sister to this epidemic means not only covering when your little brother is high at family gatherings and helping him find free HIV testing sites, but it also means returning the coroner’s phone call and picking out a box to house his ashes. It means holding our mother as she saw him in his finality. Even as he laid there on that table, his eyelashes were so impossibly long they brushed his top eyelids. A tinge of our sibling jealousy was present even in our final physical moments together. As I envied his long eyelashes one last time, I pressed the promise between my aching teeth and cascading tears to take him with me everywhere, always.
Two months after his death, I got tattoos in his handwriting on my forearms. One says, “everywhere” and the other says, “always”. The handwriting sample came from a Christmas card he gave me following an abhorrent year with his SUD. I felt a desperate need to carry his memory with me, fearing that the flawed human condition would cause me to forget the dearest details, like his laugh and the scar on the side of his nose. These were my first tattoos. It wasn’t until they were in permanent progress that I thought about how I would feel seeing these small but visceral pieces of him on days when I was angry. What about the days when I missed him? What if I didn’t want to remember my promise made amidst sterile hallways and autopsy quilts?
We all have days, parts, and stories we’d like to hide in the back of the pantry like our least favorite canned vegetable. The impact of intergenerational SUD, however, will not be shoved aside. While the tattoos were borne from grief, an artistic grasping at straws for some way to fulfill what felt like an impossible promise, they have become the hallmark of my healing. More often than not, they remind me of Scott’s joy and impossibly big heart. They remind me I am worthy of respect, both from myself and others, a topic he rambled on about during our second to last conversation.
Early on, people’s questions about the meaning of my tattoos led to apprehensive and fevered calculations about whether or not the inquiring mind would be appalled, saddened, or appreciative at my response. They have certainly generated palpably uncomfortable pauses, ceasing all curiosity with a side of wide, shocked eyes. They have also sparked connection with friends and strangers alike, serving as an affirmation that we are never as alone as we may sometimes feel.
Last year while traveling in Mongolia, a new friend noticed only half of the pair and the sun graphic in front of the writing and beamed as he exclaimed, “Ah! Sun, “everywhere”! Good reminder!”
It has now been three years since Scott died. The way our country continues to respond to the opioid epidemic has changed in that time. We have approved the use of even more public health funding to support increased harm reduction efforts (hint: research says we need even more if we want to abate the expense and loss looming from associated communicable diseases like HIV and HCV.) Not long ago there were major headlines about the wonders of naloxone, a life saving tool that reverses the effects of an opioid overdose, because it was used to save the life of the person who sang the national anthem at a major football game.
We are starting to understand opioid misuse disorder as a disease, one that had gasoline thrown on it by unethical and illegal prescription drug promotion and distribution. Things are changing, but stigma still overwhelmingly mars resource access. People who are battling the impossible need care and support, not misinformed judgement. At the causal heart of this dysregulation is the hollow horror of traumatic childhoods, untreated or undiagnosed PTSD, fraying mental health, unbearable physical pain, societal oppression (including racism), and in some cases, bad luck.Shining through the cracks of the epidemic’s etiology are also the people and communities left in the wake of this inexcusable and unimaginable loss. Being someone listed in the “survived by” section of this public health disaster is strange and raw. We are a constituency that does not yet fully understand our power, partly because most of us can’t believe we’re still living after the hell we’ve survived. Because we’ve loved people through the full life course of this disease, pre, during, and post, we understand SUD in an intimate way that even rigorous science would find difficult to measure.I can confidently toss my hair over my shoulder knowing that I’ve walked beside some of the most putrid human depths. It feels wretched and physically heavy, but it is also wildly powerful, a heady permission to live without fearing the worst, because babe, I’ve already ridden that ride. As a member of this party, I’m still figuring out how I want to wield this power and how all of this braids into my life moving forward. What I know in my marrow is that my responsibilities as a big sister don’t stop just because my brother left the party early. I will still share embarrassing pictures of him. I will be deeply proud of him and deeply annoyed by him. And in every way possible, I will always be in his corner.
We made progress in our response to the opioid epidemic until COVID-19 began clawing at the walls this year. According to the American Medical Association, overdoses are trending upwards during this time and Kentucky is keeping pace with this concerning escalation. Key social services, including access to stable housing, food, and even treatment, are increasingly difficult to access as we seek to move in ways that accommodate the necessary measure of social distancing. Jobs are scarce and people are rightfully scared. While attempting to abate the spread of the on-going pandemic, the opioid epidemic is gaining strength.
We need more resources, more research, and a more empathetic societal response to save lives, families, and strain on the healthcare system in the face of this escalating crisis. This type of change is grand and slow, but we don’t have time to pine helplessly in the dark for salvation. We need healthcare professionals and public health experts who are educated about systems of oppression, social determinants of health, and health disparities building systems that center the voices of those most severely underserved. The pandemic, not unlike the opioid epidemic, has put on stage the consequences of inequitable systems that value and allow access for people based on identities they hold, including race and gender. We need local, state, and federal government to support this work with laws, policy, and funding. We need all of this now.
One of the single greatest things we each can do right now is be more compassionate towards both the situation and the people ensnared by this cunning and formidable foe. Withhold your judgement about the so-called addict next door. Be kind with the person brought to a point in their life where an open palm and a cardboard sign is survival. For those carrying the boxy weight of a substance misuse disorder themselves: be gentle and forgiving with yourself — you are worthy.
Remembering that this is a condition hurting actual humans is a pretty good place to start. Should this prove challenging, just remember: people who inject drugs are not morally flawed weights on our communities. They are people loved by families, including siblings, who are desperately trying their best, despite the monstrosity of health literacy gaps, disease, and poverty. They are whole humans, many of whom began misusing substances as a result of severe, unrelenting pain brought on by some combination of emotional, physical, and systemic trauma. They are a little brother who is excellent at both baseball and picking on his big sister.
Need some support for yourself or members of your family? The author suggests the following websites:
National Harm Reduction Coalition: https://harmreduction.org/
SAMHSA National Helpline: https://www.samhsa.gov/find-help/national-helpline
Chelsey Reid is a public health professional and writer dedicated to addressing gaps created in communities and healthcare settings due to systemic health disparities. She also loves running, and her dogs.
