The Love of My Life

My husband Paul was the love of my life. He was smart, funny, and incredibly kind. He was a computer engineer, a foster parent for sick and orphaned animals, a defender of the underdog, a brilliant chef, a true traveler - never a tourist, and a man with a passion for learning I’ve never witnessed before or since. I loved him with every fiber in my being for the 20 years I was with him, and for the nine I have been without him.

Alcoholism ran in Paul’s family, affecting his siblings and taking the lives of two of his uncles and his father, who died on September 6, 1992 of alcoholic cirrhosis. He was 53. Sadly, Paul died on that same date exactly 16 years later, from the same disease. He was 42. When he died I was devastated that I remained here, without him. I was a widow at 43, and had grown to despise the world that made his life and death even more difficult by treating him with judgment and contempt.

I often read that alcoholism is a disease. That makes sense. It has a strong genetic component, changes brain structure, and is defined by obsessive and repetitive “thought-looping”, making sufferers unable to focus on anything else, and prioritize drinking over everything - and I mean everything - else. The possibility of jail, loss of family, friends, jobs, and even death are secondary to these thoughts. Over 6% of all men, and 4% of all women suffer from alcohol use disorder, resulting in a jaw-dropping 88,000 deaths annually in the U.S. alone.

Yet the opinion that addiction is a choice stubbornly persists. Because it is hard to tell a heavy drinker from a person with alcoholism. Because there is a continuum, and it is difficult to know when that line has been crossed. Because it is easier to blame than it is to understand. And frankly, because some people enjoy feeling superior to others. Even the most commonly prescribed program for people with alcohol use disorders, Alcoholics Anonymous (AA), describes substance use disorder as a defect in character (see steps 4, 6, & 7).

But people are literally dying from the shame we heap on them.

One clear example of this is organ transplantation. Patients with alcohol use disorder in the USA must, in most hospitals, show they have been sober for six months before they can obtain surgery. Yet if someone has an eating disorder and needs a liver transplant, there is no similar requirement. The most bizarre part of this is that studies have shown that people like Paul who suffer from active alcohol use disorder share the same post-surgery prognosis - even decades out - as people without the disease.

Like many others, Paul was never even put on the transplant list by his doctor. Paul’s doctor’s judgment was clouded by contempt for his “choices”. In fact, after my husband relapsed, we were at an appointment during which a Harvard-educated GI Specialist (and medical school professor) yelled at me, “How could you let him do this?” Those words still haunt me every day, even though I know now that there was nothing I could have done.

While most of the medical community, at least nominally, accept the disease model, there is the paradoxical co-existence of deep-seated blame. As my husband was dying in the hospital, the staff doctor avoided him, avoided me, and missed meetings. Some of the nurses were rough with him. The doctors spoke to Paul using jargon his ammonia-filled brain could not understand.

They brought him out of sedation long enough to let him know he was going to die. I asked them to continue sedation, because I couldn’t bear to see him in any more pain. Later that night his mother came into town, and I went to a nearby friend’s home to get a few hours of sleep. Before I left, I leaned over him and asked if he felt any pain. He whispered, “Not anymore.” Those were his last words to me. He died that night when I was gone. His mother has refused to speak to me since she left later that day. Blame reared its ugly head again.

Until we instill a solid understanding of why addiction is a disease, we will continue to have a culture of blame resulting in the increasingly higher rates of mortality we see now. And until we get past blame, we cannot provide supportive, humane, and successful treatment for people with addiction. Because a person with substance use disorder will of course not seek timely treatment when doing so results in a life sentence of shame, blame, and guilt. And a society that feels disgusted by people with substance use disorder will of course provide these patients with a lower standard of care.

What can we do? One great place to start is to change the way we talk about addiction. Studies show that the words we use to talk about addiction actually affect doctor perceptions, and resulting treatment outcomes. 

So let’s change the language. People with addiction aren’t “bums” or “drunks” or “addicts”. They’re people with an illness. When we hear stories of people getting black-out drunk, or jokes about getting liver damage because of an awesome party, we need to speak up and say that is not funny or acceptable. In short, we need to give this disease the same gravitas we give to every other deadly disease. If we wouldn’t say it about Leukemia, we shouldn’t say it about substance use disorder.

This change in our language is imperative, because it is the first step to shifting the culture. We need to show that people with addiction are not some scary, pathetic, sub-human “other.” They are you, me, my husband, your wife, husband, daughter, son, co-worker, or best friend. They are strangers on the internet. They are people sitting next to us on the airplane. They don’t deserve contempt, ridicule, alienation, or death because they are struggling with an illness we are lucky enough to not have. They are human beings, a part of our collective humanity, and deserve our very best.

Originally published in 2018.