The young woman walked out of the ICU knowing she’d never see her friend again. At age 26, this was the second time she’s said good-bye to a childhood playmate in this ICU. When the first of her friends to die was lying there with a machine breathing for her, there was a constant stream of friends and family coming to say good-bye. Now that her second friend was dead but for the machine pumping air into his lungs, there was the same stream of loving people to say good-bye. Both of her friends had struggled with genetic illnesses all their lives, both had done their best to stay alive, both succumbed. The first one died of cystic fibrosis; the second, of addiction.
The friend with CF did everything she knew how to do. Took all the medication her doctors told her to take, ate only the foods her doctors told her to eat, exercised, stayed fit, everything. She had a loving family that got her to the best doctors who gave her the best care. But CF doesn’t have a cure, and it doesn’t have a treatment that does more than extend life into the 20’s. It’s genetic, and it’s unfair, but so is every illness you’re born with.
The friend with addiction was really no different except for one thing. When his loving family took him to the best care, he heard that medication wouldn’t help. He heard that he should be able to “recover naturally,” that he didn’t need medication. The best doctors that his family sought out didn’t tell him about evidence based medical treatments for his genetic illness. Instead they told him his illness was caused by drugs and would go away if he just stayed clean and became spiritually fit. So in his 4th or 5th rehab he went to a religious based program to get that spiritual fitness. I don’t know his spiritual status when he died, but I know he couldn’t breathe on his own.
I wrote a piece recently about what we die of when we die of something that has a treatment we aren’t offered. The young woman’s first friend died of cystic fibrosis and our inability to treat the illness better. Everyone did everything they could. It’s just beyond us at this point in time. But I’m not sure that the second friend died of addiction. There is a treatment available that has been shown to improve survival rates, but he was told it’s a bad thing to be on. There’s a known neurobiology of his illness, but his treaters were willfully ignorant and disdainful of that knowledge, believing that their spiritual superiority was enough to give good treatment. There are proven techniques to improve outcomes, but his treaters would rather blame their failures on their patients and keep their ideology intact. It’s like drowning a witch in the middle ages, and saying after she died, “Well, I guess she wasn’t a witch after all. I’m glad we cleared that up.” If the patient lives, he was ready for the treatment. If he didn’t, it was his fault for not being ready.
Sorry to be so blunt, but there’s really no better medical term for it. If you want to treat addiction, treat it like any other illness. No one has to want a treatment to work for it to work. Penicillin works regardless of how much I want it to, or don’t. And we don’t get to hold out hard-to-accomplish treatments as the only way and then blame people because they can’t do them. We don’t get to tell people who are ill and suffering that the only way out is unavailable to them. That’s not what we do with CF patients, or diabetes patients. We meet them where they are; we create with them a treatment plan that is doable, even if it isn’t optimal, so we can move them to the next step. But somehow, with addiction, we always swing for the fence. We so badly want this not to be a real disease, we so badly want this to be the fault of the patient’s mistake, we are so scared of what it means that brain disease can be out of our control. So badly do we need to believe that it is in the control of the person that we sacrifice thousands to our failure to see that this way doesn’t work.
Twenty-six is too young to have lost two close childhood playmates to genetic illness. And any age is too young to lose a life that could have been saved. But why am I making such a fuss over one kid, when there are thousands dying every year of the same illness, the same ignorance? Because we see the thousands and don’t stop to think. Thousands are just background noise, but this one? This one had a mother and a father and siblings. This one was energetic and talented and wanted to help others. This one had friends he left behind who will never be the same. The real shame is that he’s no different from the thousands. So, why can’t we wake up and hear them?