The Right to Die Is the Right to Live

Wolf the Artist and His Struggle to Survive as He Pleases

By Lisa Carver

"When the men on the chessboard/Get up and tell you where to go/And your mind is moving slow..."

I see now that I, too, bullied Wolf’s gentle soul. He is hyperreligious, and I discouraged him from going to the evangelical church that he likes because I felt that their concentration on the Kingdom of Heaven—where, Wolf is told, he will have a perfect body and feel no pain and his epiglottis will work right and he can eat with his mouth instead of pouring formula down his gastronomy tube—was keeping him from being responsible and proactive in this life. And I felt the emphasis on a fantasy afterlife exempted him from having to come to terms with his anxiety in this one—his constant disturbance over pain that any and all life-forms anywhere might be experiencing. If I swat a mosquito, he feels it inside him; he identifies with the squashed insect, with all small and unloved creatures. He always has. In heaven under Jesus’s protection, his church tells him, there is no such thing as cruelty.

Since he can’t drive or figure out how to ride the bus on his own, my reluctance to help him get to church was, effectively, my banning it. I was desperate to keep him in the here and now; I felt threatened by his notions of a perfect future. I felt like he might choose to leave us, not stay and fight where things are so hard when tantalized with offers of something easy and beautiful. But why should a person with such a messed-up body and mind be forced to live in this crappy world? I was wrong to trap him inside the house on Sundays, and I was wrong to trap him in his body instead of letting him escape the pain, at least for a little while, through the promise of a superior vessel. I negated his convictions “for his own good.” That was selfish. Growing up, I was oppressed in many ways, and I seethed with a hatred that felt like revolution. I swore that when I was an adult, I would never judge or block anyone’s desire. And here I was, doing exactly that to my own son. 

It got that way, of course, through love and fear. Wolf was sleeping 12 to 15 hours a day; he’d broken three bones solely from walking around. We loved him, we were losing him, and we were helpless except for attempts to regulate two small aspects of his decline, so we fixated on them: dumping meds (in the toilet, in the garbage, down the sink, balled up in a napkin) and “sneaking food,” which simply means he sometimes goes behind our backs and eats something with his mouth. When Wolf ingests food orally, some of it drops into his lungs and rots. This kills cilia that block foreign bodies from entering the respiratory system. Cilia don’t grow back. If he doesn’t stop, the act of inhaling will become harder and harder for him until, eventually, he’ll suffocate.

As his energy dropped and his health worsened, those closest to him grew, slowly and incrementally, angry with him. I wanted to have a nice life. I wanted to take Wolf and his sister, Sadie, to the beach on the last warm day of the year of what could turn out to be the last year of his life, but he was stuck in the bathroom where he puked and quivered and napped on a floor mat, repeatedly saying, “I’ll be ready to go in five minutes,” while Sadie and I watched reality TV until finally it was dark; we weren’t going anywhere. 

“I don’t want to die,” he told me afterward. 

“But you must want to,” I said, “because that’s what you’re doing to yourself.”

Sometimes I hated this person who disobeyed our orders because he was killing my son. Wolf’s a naturally scared kid anyway, so when I told him he was killing himself it terrified him. Or, I alternately thought, maybe I hadn’t scared him enough? Did I need to be even bleaker to get through to him? I was tired. I was sad. I made mistakes. I spent hours every day taking him to appointments, talking about these appointments, researching, attending conferences, filling out paperwork, fighting with his schoolteachers and aides, picking up meds, arguing with Medicaid, criticizing others for their treatment of him, criticizing myself, coming up with new ideas that seemed like they might work but then didn’t. I couldn’t sleep. It’s hard to keep a job under these conditions, hard to keep friends. And what was it doing to his sister? She barely had a mom. She lived with an invalid and his nurse/butler/lawyer. There was always something to attend to that was more urgent than her wants and needs.

Wolf was telling the truth. He didn’t want to die. He just wanted to be left alone, to be a normal young man and not a patient. To stop being “fixed” or tested or told what to think and believe and do. He wanted to live, and what we were doing to him made his life impossible. He either couldn’t articulate these feelings, or he tried and no one listened. It’s almost impossible for him to disappoint or disagree. He still feels it when things aren’t right… he just can’t say no to anyone’s face, so he swallowed his noes and let his worries build up inside, building pressure, needing to erupt. Maybe that’s what was making him throw up so much.

At the peak of my exhaustion, I attended a Buddhist guided-meditation retreat. The goal was to practice loving kindness, which was a new and creepy concept for me, but all my concepts hadn’t been working, so I figured why not try these on? For our third “imagining,” the instructor asked us to picture the face of someone with whom we were in conflict. To examine this face without judgment and with unconditional acceptance—to just see them.

And just like that, I saw Wolf for who he was. Professionals pronounced Wolf as having “flat affect”—a face that does not show any expression. But when he is around animals, even if he is doing something that other people find unsavory, like cleaning the stinky rabbit cages at the shelter, it’s like his eyes and his skin change color and become bright, glowing. He looks shy about his happiness, like a young mother unfamiliar with the feelings of joy and importance and luckiness. He’s not a sickness in need of a cure. He’s a kind, delicate, caring, mystical, and unusual young man who loves jokes and is, I saw then, also full of strength and rebellion. He’s perfect as is. Of course he’s going to die. We all are. His death will probably come earlier than most. But right now, he’s just right.

Also, he’s a teenager. So he makes himself sick with bad decisions and inconveniences those who try to help him. All teenagers do! Even most adults. The consequences of Wolf’s destructive actions simply unfold more rapidly. Plenty of people drink and smoke and eat themselves slowly into the grave. No one has a right to take their choice to do so away.

Over the years, I’ve refused treatment for Wolf twice, when I believed that the potential benefits were not worth the suffering and humiliation such treatments would entail. Both times I was “written up.” I don’t know what was written or where that information was filed, but it made me feel threatened. If I, with all my faculties, felt so powerless against everybody’s authority over Wolf’s life, how must he feel, with his 67 IQ, his chronic exhaustion, and his inability to pronounce half of his medications? And yet, is it not his life? Shouldn’t he be the one to ultimately determine its quality and quantity?