I experienced the entirety of my sister’s addiction, struggle, and death in just six days last year.
On July 2, 2017 I got a call telling me to come home because my sister Jenny was in the hospital and had just been revived with Narcan, a drug used to reverse opioid overdose. She had just turned 44 years old. She was a college educated, suburban mom.
I arrived at Kenmore Mercy hospital near Buffalo, NY the next day, and as I entered Jenny’s room I barely recognized her. She was radically transformed from just a few months ago when we had all been together for the holidays. The whites of her eyes were an awful jaundiced color with clear liquid bubbles all over her eyeballs like a monster; her legs were bones; her skin was an unnatural yellow-maroonish color. She was in and out of lucidity and never stopped moaning. She had a nicotine patch on her arm, which struck me as absurd.
I didn’t understand how such a radical decomposition could have happened so quickly. I had no idea my sister was so sick.
Jenny never left the hospital. After four gruesome and heartbreaking days she moved down the hall into a hospice room where she died quietly with my parents on either side of her bed holding her hands. My mom had a baseball cap on. I never saw her cry. My dad, a Vietnam combat Veteran and Bronze Star recipient, was silent. It was so quiet. My sister Colleen and I sat at the foot of the bed, looking at a perfectly framed picture of Jenny and our parents as she took her last slow breaths.
I still don’t understand how my sister died of liver failure from drugs and alcohol without our family ever having an honest conversation about it. Jenny didn’t do a single stint in rehab. We never had an intervention or talked about treatment.
That week in the hospital, the experience with my sister’s doctors was maddening. Nothing was explained to us. Substance use disorder was never mentioned. Her doctors just kept saying “she’s dying” from liver failure and there are no options, which didn’t make sense to me given her age. When I asked her doctors if I could give my sister part of my liver, they were dismissive, saying she would need to be sober for six months before that would even be an option and it was just too late at this point. So even at the very end, I felt the stigma of this disease at her deathbed in the hospital.
In trying to piece Jenny’s story together after her death, I suspect she started drinking excessively and taking a cocktail of prescription medications from “the best doctors in Buffalo” about five years ago when she had surgery and reeived prescription opioids for pain. About the same time, she and her husband began a stressful separation, and my sister started to become isolated; she stopped working, had few friends, and saw us less and less. This behavior culiminated in frequent trips to her local emergency rooms for generous doses of Dilaudid (a synthetic opioid) for pain in the year before her death.
Only now do I understand how addiction ravages families through silence, secrets, denial, and lies. It isolates us from our families and our community. And while my heart is broken, I am so angry.
Mostly I’m angry with Jenny for not asking for help. I would have done anything for my sister, but she never asked. I’m angry at myself for not being more educated about substance use disorder. But I’m apoplectic at those doctors who hooked my sister on drugs including Dilaudid, Xanax, and Topamax for years.
Since Jenny died, I’ve read surgeon general reports, presidential commission recommendations, all the state opioid plans, research, and legislation. I’ve reached out to health experts and doctors. I’ve met with Senate staff. I gave a TEDx talk, published op-eds, and volunteered at an outpatient addiction treatment center.
The main thing I’ve learned is this: There’s no end in sight to the opioid crisis in America.
The opioid crisis is a manufactured problem at the intersection of pain, economic disadvantage, and isolation, fueled by a predatory free market at its worst. Shame and stigma act as force multipliers, enabling this disease to metastasize quietly and stealthily across the country. While doctors and experts know addiction is a chronic illness (like diabetes or asthma), much of the public—and some in Congress—still view it as a moral failure.
Earlier this year, Congress allocated just $6 billion to fight the opioid crisis for the next two years. The White House Council of Economic Advisors estimated the cost of the opioid crisis in 2015 was $504 billion in healthcare bills, criminal justice costs, and lost productivity. In comparison, the annual budget for HIV is $32 billion.
In 2017 a record 72,000 people died from overdose; Jenny was just one of them. My sister (and so many others!) might have lived if our family had rallied around her and talked honestly about her illness. She might have lived if we helped her find a doctor who was board certified in addiction medicine and got the medication assisted treatment that she needed.
I’m not ashamed of my sister for having substance use disorder. I’m so ashamed of myself for not being educated about it sooner, and I’m ashamed of our national response and lack of funding.
Since Jenny died my family doesn’t talk about her death. I suppose it’s too sad for my parents, and I don’t want to cause them more grief, but I feel like a spinning top. I can’t endure the silence anymore, so I’ve chosen to share our story publicly wherever I can. It’s not the saddest story, but it’s a chilling example of how shame and isolation render families helpless to fight this disease.
It’s been more than a year now, and I still wake up every morning and can’t believe one of my sisters is dead. That week in July, I tried to say goodbye to my little sister, “…I love you I’m sorry next time I’ll do better I promise just give me one more chance…” But there is no second chance for me.
-Kelly O’Connor is a product manager with the United States Digital Service in Washington, D.C and recently gave a TEDx Talk, “My Introduction to Narcan.” (https://www.youtube.com/watch?v=CJW4ENfqhFM )