I have been following this story in the news but have not written about it at length. I want to pretend with my whole heart that it isn’t happening, because it troubles me so deeply.
He’s back home now, after his flight from chemo being chronicled in the news media for weeks. And I, the libertarian who is sentenced with taking low-dose chemo every week from now until the end of her natural life, have an understanding of the story that not everyone else gets. I should be writing about it, but I can’t because of the blind rage that overtakes me.
We’ll try, though. Because I have to address it.
First off, we all know the boy has a type of lymphoma. And that bothers me. We shouldn’t know that. Medical records are supposed to be private–between a doctor and a patient. I’m not sure who first let out what this boy had–maybe his parents, maybe his doctors. Regardless, that’s not our business. And yet we all know it because it’s on the news. I certainly hope none of my medical issues and treatment becomes newsworthy. Because apparently we now have this “doctor patient confidentiality–unless it’s a really good story” rule in the United States.
Even more awful is the other problem. The idea that people who aren’t the boy or the boy’s parents are trying to make medical decisions for the boy and his parents. Chemo does save lives. But I’m taking it. I’m taking it at low doses. Those low doses–for treatment of autoimmune disease instead of cancer–are bad enough to make me often think that it’s just easier to be sick. I can completely understand someone electing to die rather than live the hellish quarterlife these drugs give you.
I should carefully disclaim that I know people who are undergoing full-blown chemo for full-blown cancer who don’t seem to mind it that much. Not everyone reacts the same way. But you never know–until you’ve shot the caustic acid into your body–whether you’ll be one of the folks who sleeps for a day afterward bathed in sweat. You’ll never know if you’re one of the people who is so nauseated you can’t eat for 72 hours after dosing. You’ll never know if you’ll watch your hair come out in fistfuls in the shower. You’ll never know if your mouth will fill with tiny white blisters that make eating anything salty or acidic impossible. You just don’t know.
In some ways people who have cancer have a clearer-cut decision when it comes to chemotherapy. Do it and live. Don’t do it and die. It’s a plain choice. It should be the patient’s choice. Not the media’s or the courts’ or the doctors’. Granted, choosing to die seems like not much of a choice to many people. But once you’re diagnosed with cancer, death is always a concrete option. It is no longer an abstract ‘someday’, but a certainty. Unless you’ve been there–and I haven’t personally–you don’t know and can’t say.
If this boy elects his own death I say that’s his business. And I say we leave it to him.