This essay was published by Medium: The Development Set. To read it on their site, click here.
“You know you’re going to miss me when I’m gone,” my brother Joseph says as I pick up the plastic wrap he had ripped off his turkey sandwich and flung across the hospital room. He doesn’t typically throw things, but did so because he knew it would annoy me.
“More than you’ll ever know,” I mutter, cringing at the thought of living after my only sibling has died. I toss the wrapper into the trashcan and turn towards Joey (whose name has been changed for privacy). His eyes and skin look yellow from jaundice, his stomach’s so swollen he could give birth, and his hands shake like he has Parkinson’s. He’s stopped chewing and is blinking back tears. He heard me.
“Man, this sandwich is really dry,” he complains, diverting our attention. “I think it’s as dry as that tuna you made yesterday. At least this doesn’t smell as bad.” I chuckle. Up until this week we hadn’t spent much time together in several years, but we’ve picked up right where we left off.
Joey has worked as a professional chef from New York City to Hawaii, while I, a suburban Angelino, am a self-declared domestic disaster. So any culinary attempt on my part is open game — especially since, as my older brother, he thinks he has a moral obligation to tease me. Being in our forties hasn’t changed this core belief. Apparently, the news we just received from the doctor — that he only has six months to live — won’t either.
My brother has end-stage liver disease, commonly called cirrhosis, which means that scar tissue has replaced most of the healthy cells in his liver. Until three months ago, I knew almost nothing about the three-pound organ and its crucial role as garbage disposal (eliminating toxins) and refrigerator (storing and releasing vitamins). But once I stepped in as my brother’s health advocate, I became an expert in how it functions and what happens when it fails.
But once I started telling people about Joey’s prognosis, I discovered that cirrhosis carries a deep societal stigma.
I first noticed it with my chiropractor, a widower in his fifties who lost his wife to cancer a few years ago. “Cirrhosis?” he asked, nodding his head slowly and squinting. “How did he get it?”
“He’s been a heavy drinker for 25 years,” I said, not understanding why he would ask.
“Yeah, that’ll do it,” he retorted, going back to adjusting my back without another word. He may as well have said, “So he got what he deserved.”
About 31,000 people die from liver disease annually in the U.S. There are some genetic causes, but the leading ones are hepatitis C, which is sometimes contracted through sharing drug needles, and alcoholism, or what researchers now call alcohol use disorder (AUD). Thus, people think of it as an addict’s disease and don’t have much compassion for those who get it.
I considered never seeing my chiropractor again, but quickly learned his response was on the kinder end of the spectrum. The hardest slap came from my cousin when I called her one night to make sure she knew what was going on with Joey. “Well, we’ve been waiting for him to drink himself to death — and now he has,” she blurted out over the phone, and then laughed. I was so stunned that I involuntarily chuckled along, too stunned to manage anything else. By the end of the conversation, she had thanked me for calling and told me that I could count on her, which, despite her opening remark, I’m sure she meant.
After we hung up, I realized that neither she nor my chiropractor had any idea how harsh their comments had been. Joey’s doctor wasn’t much better. I remembered the conversation I’d had alone in the hallway with him, just after he had broken the news to us that Joey didn’t have long to live. He started to ask if my brother was still drinking, but then stopped himself and said, “He can’t possibly still be drinking. How could he be? I mean look at him — his liver is in such bad shape he can barely drink water.”
It then hit me that as a society, we not only have a hard time feeling empathetic toward people who suffer from alcohol use disorder, we feel entitled to blame them.
Believe me — I get it. I’ve seethed through innumerable meals that tasted delicious thanks to Joey’s cookery, but were ruined by his slurred words and off-color remarks. For the last decade, I’ve mostly vacillated between feeling numbness and rage towards him, although now I can see that I was masking my heartbreak. My cousin probably feels frustrated as well, which would account for her callousness.
Societally, we are more addicted than ever, but some addictions are more accepted than others. For example, I’m a workaholic; I overwork in part to numb the places where I feel bad about myself. This type of compulsive behavior is rewarded in our economic system with promotions and accolades. If I were to have a heart attack, no one would mumble that they had been waiting for me to work myself to death.
Eighteen million people in the U.S. suffer from alcohol use disorder. Why do we think about their addiction differently? We think they have to hit “rock bottom” and there’s “nothing” we can do to help.
Some researchers suggest this would be the equivalent of prescribing insulin shots only after a person has fallen into diabetic coma or offering antidepressants to people only after attempted suicide.
If we can move past stigmatizing them for their struggles, we might be able to see how our healthcare system and society have failed them. In 1956, the American Medical Association named alcoholism a disease, but sixty years later, addiction medicine is the only branch of medicine that is still rooted in religion instead of modern science.
Most doctors believe that Alcoholics Anonymous (AA) is the only way to treat AUD. And to be sure, many people have turned their lives around thanks to AA. Its grassroots approach and peer-support network pushes against the isolation that many alcoholics face. Also, it’s free, which makes it accessible to people who may not be able to afford treatment otherwise. However, it’s unreasonable that our medical system does not offer alternatives.
Joey tried AA at different times, but even though we grew up in a Catholic family and he believes in God, he couldn’t stick with it. As a very private person, opening up to a room full of strangers couldn’t have been easy.
One of our cousins, on the other hand, hasn’t had a drink since we were in our twenties and swears by AA. So it does work for some people; we just don’t know how many, since members are anonymous and statistics are therefore hard to track. The most precise statistic Gabrielle Glaser was able to track for an Atlantic story earlier this year suggested a five to eight percent success rate — against AA’s own claim of 75 percent.
There are alternative AUD treatment options, although rarely used. Naltrexone, the subject of the documentary One Little Pill, has a 78 percent success rate in helping people control or stop drinking. The U.S. Food and Drug Administration approved it for alcohol-abuse treatment in 1994, yet doctors prescribe it to fewer than one percent of patients due to the taboo of giving drugs to people with a history of addiction. While naltrexone wouldn’t work for my brother because he already has cirrhosis, it may have helped a decade or two ago.
While demonizing the behavior of those suffering from AUD, our healthcare system does little to address the chemical side of alcohol dependence after the initial detox. For example, Joey doesn’t typically like sweets, so I love when he craves them because it means he hasn’t been drinking and his body is having sugar withdrawals. This type of symptom should be monitored by a medical professional, as should the negative effects that alcohol can have on the brain, such as problems with cognition and memory.
I’ve also noticed that our medical system is overly specialized; they’re treating Joey for liver disease without addressing his alcoholism or the psychological factors that may have caused it.
This is especially problematic since in the last month, he has made a recovery the doctors initially said would be impossible (although they now admit some improvement is not uncommon in patients who get cirrhosis from alcohol). Since it’s been six months since he stopped drinking, the parts of his liver that still function are functioning better. This means that he will likely live longer than the initial prognosis, although we don’t know how much longer. I feel relieved by this news — and scared. How will he be able to stay away from the bottle?
“Don’t relapse. If you drink one beer you could end up in a coma,” the liver specialist warned Joey just last week. This, after the nurse had cautioned everyone in the waiting room not to drink during the upcoming holidays because even one drop would be poisonous. But neither the doctor nor nurse asked about or offered a plan to avoid relapsing.
When I asked for a mental health referral, the doctor rebutted that a psychiatrist wouldn’t know how to treat alcoholism and that if anything, my brother should go to AA. Then he asked us to leave him to “handling the liver.” If Joey wanted a mental health referral, he should ask his primary doctor for it. He ended the conversation by telling me, “Joey has to want it.”
I didn’t point out the numerous things Joey didn’t want that were nonetheless prescribed, such as an endoscopy and medicine that makes him vomit. Those were non-negotiable. Why isn’t dealing with the underlying issues that may have spawned his alcoholism?
It’s comforting to know that this probably won’t be our last holiday season with Joey. Still, people keep telling me to savor every moment with him and have suggested recording his voice so I can listen to him telling stories after he’s passed. But Joey is not a big talker and has no interest in being recorded — although he does have a lot to say about my attempts in the kitchen. This Christmas, I plan to join him in front of the stove to finagle some free cooking lessons. Even though odds are against it, I hope it will be the beginning of a new tradition that we get to carry out for many years to come.