Within an hour of landing at the Buffalo, New York, airport in July, I am helping my little sister get to the bathroom at Kenmore Mercy Hospital after she’s been revived with Narcan. I don’t know it yet, but Jenny will die in six days. She’s just turned 44. Her estranged drug-addict husband will take her body from the hospital against her last wishes, and we don’t know her final resting place. No wake; no funeral. I will be on a flight home to Washington in eight days, stunned.
Since then, every day I’ve tried to understand how my sister, who lived a middle-class suburban life with her two children, died of cirrhosis of the liver from opioid addiction and alcoholism without my family ever having an honest conversation about it. She didn’t do a single stint in rehab or have any interventions. She really never had a chance, because I didn’t have the courage to face the truth.
How did this disease sneak up on our family? My two sisters and I grew up in a working-class home with many advantages, and all of us graduated from college. My dad is a Vietnam combat veteran and a Bronze Star recipient (although he’d never tell you that and would be angry that I brag about it here). My mom had a hard life growing up with a single mother, but she is the strongest person I know. She and my grandmother would often tell us to “offer it up,” which I understood to mean stop complaining or feeling sorry for yourself. My parents are extraordinary, humble, reserved people, which probably worked against us as we tried to support Jenny amid something none of us understood.
Jenny was smart, athletic and pretty, with a quick sense of humor. But about three years ago, I started thinking something was wrong. She was taking a strange cocktail of medications prescribed by some of the “best doctors in Buffalo” and had developed increasingly noticeable symptoms, including shaking hands, stuttering, weight loss and personality changes. We let my sister lie to us for years as she quietly descended into despair and a lifestyle that was alien to all of us: bankruptcy, police interactions, restraining orders, reclusiveness and emergency room visits for pain meds. We tried to be supportive, but in hindsight we enabled her.
We rationalized her textbook symptoms and accepted her outrageous medical explanations rather than accepting the truth: She had a drug and alcohol problem, and she was lying about it.
Over the last eight months of her life, Jenny and I talked less and less. I wanted to discuss the medications she was taking, but she refused. Her response was always the same: “Today’s a bad day. I can’t talk about it today. I’m very busy.” These conversations usually ended with me getting annoyed and hanging up, but only because I thought we had years of failed rehab attempts ahead of us and many future opportunities to have this awful talk. I had no idea we were already at rock bottom. It had crept up on us.
Since Jenny died, there have been many mornings when my first thoughts are of Vicodin and vodka to make the guilt and sadness go away. The only thing that stops me are the vivid memories of our last days with her in July, which were heartbreaking and gruesome.
It started with a phone call from my sister Colleen, a nurse, telling me to come home. I arrived in Buffalo the next day with a blank check, impatient to finally get Jenny to a private rehab facility. Within hours, I realized that this was something entirely different — and that we were too late.
I hadn’t seen Jenny since Thanksgiving. She was radically transformed. The whites of her beautiful light green eyes were an awful jaundiced color, with clear liquid bubbles all over her eyeballs like a monster in an old horror movie; her bony legs stuck out of her hospital gown; her skin was an unnatural yellow-maroonish color; she was in and out of lucidity, moaning for the Dilaudid she was used to getting at her local hospital in generous doses (and overdoses). A nicotine patch was on her arm, which struck me as absurd.
I thought it was odd that Jenny wasn’t scared when she saw Colleen and me by her bed in the hospital, but we all talked as if she were there because of a broken arm or tonsils that needed to come out.
We are a close family but not affectionate. That week, I held Jenny’s hand a lot and touched her hair. (I don’t think I had ever touched my sister’s hair before, and now I feel it all the time on my right hand.) I put eye drops in her eyes, rubbed her swollen feet, fed her Ensure. We watched movies and recited quotes from her favorites like “Step Brothers” and “Forrest Gump,” funny movies we’ve watched together many times. I kept saying “I love you, Jenny” like Tom Hanks says it in the movie, and I was ashamed to realize I couldn’t remember the last time I had told my sister I loved her.
Colleen and I slept at the hospital every night, getting up every 45 minutes to help Jenny go to the bathroom. It was chilling to watch her look up from the portable toilet in the dark with those eyes when we couldn’t make it to the regular bathroom. She was embarrassed even in her medicated end-state daze.
On day four, things started to go fast. “Do not resuscitate” orders were signed, and for the first time in my life I saw my mother visibly shaken, although she didn’t cry. (I’ve never seen my mother cry.) We moved into a hospice room down the hall, and the morphine flowed more regularly. The remaining two days were spent sitting quietly by Jenny’s bed.
By then, Jenny’s eyes were always closed. She seemed uncomfortable, grimacing and making occasional sounds. I kept leaning over to touch her hair and whisper in her ear. Once I said: “I’m sorry. I’ll miss you,” and she suddenly opened her eyes wide and looked directly at me. It’s the most scared I’ve ever seen her — or anyone. I smiled as hard as I could, but my tears were everywhere, falling on her.
On day six, her entire face changed, and she was pretty again. All the liquid had drained out of her little body into a bag of bloody fluid that hung off her bed. No more monster eyes under her closed lids. She looked the healthiest and most content I’d seen her in years. The skin on her face was a creamy pink. She looked like Jenny when we were in our 20s.
She died that night with my parents on either side of her bed holding her hands. My mom had a baseball hat on. It was so quiet. Colleen and I sat at the foot of the bed, looking at a perfectly framed picture of Jenny and our parents, one that I’ll never be able to unsee.
It’s been four months, and I still can’t believe she’s dead. I don’t know why our family didn’t talk about this sooner. We could have survived this awful disease if we had faced it together. For the rest of my life, I will regret not having the courage to force the moment to its crisis with one honest, uncomfortable conversation — even a family fight — about drugs and alcohol while Jenny was alive. She might still be here.
Right up until she died, Jenny denied having a problem, despite her stick legs and monster eyes and the fact that two exhausted sisters were shuffling her to the bathroom. I guess that’s what we do in the end with this scourge. We suspend disbelief to give the people we love some dignity while we do the wet work: the messy, smelly, awful and kind things. We take them to the bathroom, clean them up, touch their hair, feed them, laugh and cry.
We finally say all the things. We are our best selves, even if it is too late.
Kelly O'Connor
Kelly O’Connor is a product manager with the U.S. Digital Service.
