The Right to Die Is the Right to Live

Wolf the Artist and His Struggle to Survive as He Pleases

By Lisa Carver

Self-Portrait in yellow.

When Wolf turned 18, I secured guardianship over him in order to continue to speak to medical professionals on his behalf. I’m a pretty nice person, but I don’t imagine everyone who gains control of someone deemed mentally or physically incapacitated (along with access to hundreds or thousands of dollars a month to spend “for the ward” as the guardian sees fit) loves freedom as much as me. Guardianship gives me “the right, power, and authority to determine where the ward travels or lives.” I have also been granted “the right, power, and authority to gain access to all confidential records and papers of the ward,” which means he has no privacy. He is also not allowed by the court to “make decisions concerning educational matters and training or the provision of social and other supportive or assistive third-party provider services.”

We, his “team,” had deemed him incapable of making decisions that would enable him to have a true life that didn’t constantly revolve around survival. We hadn’t allowed for the possibility that maybe he didn’t want to keep going. Or maybe he did. We’d never given him a chance to figure it out. 

The day after Wolf’s 18th birthday, I asked, “What do you want?” I don’t think anyone had ever asked him this before. 

“I want friends,” he answered. “I don’t have any friends because there’s always doctors and aides. I don’t know how to have friends, but I want to try.”

“Do you want to fire some doctors?”

“Can I do that?” 

“It’s your life.”

He was shocked.

Within a week he had fired two of his three therapists and his yoga instructor (who is great and had been giving him lessons for 13 years—only no one had noticed that for the past year or two, he’s hated it), and he informed his hormone-therapy doctor that he would only be coming in for blood tests every other month. He tore down the stop, wolf! sign stuck to the refrigerator door with a magnet and ripped up his behavior chart and his appointment calendar. He tried to convince his psychiatrist to cut down on his mood stabilizers. (The psychiatrist said no.) I found someone to take Wolf to church. He woke up early for it, happy to have a reason to put on a collared shirt. He also started lifting weights. He says he’s “working on his abs.”

Wolf at 17 years old. He won three medals that day.

Less than two weeks into Wolf going gangbusters on the formatting of his life, one of Wolf’s doctors—a wonderful and thoughtful lady—called and told me she and the hormone doctor had decided that Wolf needed to be hospitalized. She said that she’d awoken suddenly at 3 AM, worried about him. We’d all been fighting to reinstate the Ondansetron, and we’d lost. She was convinced that without this last-ditch medical defense against his constant vomiting, death by starvation was imminent. She hadn’t seen him since his decision to change his life, so how could she know that giving him choices, after almost two decades of being made helpless, could have had such a profound and immediate effect on his body? It was as if once Wolf’s mind figured out it had its own power, it then relayed this message to his immune system, which said, “Oh!” and started working, just like that. I told her he was hardly vomiting at all anymore, but I don’t think she believed me.

“No hospitalization,” I said firmly. 

“I had to do a lot of work to get a spot for him,” she pleaded. “It will be a safe environment to experiment with stopping or starting different meds where we can handle it if he goes into cardiac arrest. We need to find out what’s going on. We need to stop this.” 

“Yes, we need to stop curing him. It’s making him sick.” 

She was silent for a long time. I thought I could hear her crying. The last time she’d seen Wolf, he was moaning and wouldn’t open his eyes. The last time she’d seen me, I was crying. When she had heard from various doctors about Wolf suddenly refusing treatment, she must have thought he was taking part in an assisted suicide.

And that’s what it would have been, had things gone that way. But so far, in the weeks since we—since Wolf—made the decision to reduce treatment, it’s been the opposite: His health has improved. It’s like he’s living for the first time ever, instead of treading water waiting for the release death brings. And he likes it, this being-alive business. He’s still most likely going to die young, perhaps sooner and more suddenly than if he was hooked up right now in a hospital bed as the doctor had wanted—but he’s vibrant, and parts of him that have been dormant since birth have come alive. He’s still painfully humble, but now when he needs to be, he’s the boss.

Like the other night when he fired a particularly pushy aide. “I would like to be your friend,” Wolf told him, “but I don’t want the client-aide relationship anymore.”

“Is this because of the other day when I had to yell at you to stand up in the shower?” the aide asked.

“There’s just too much negativity. I want to have some fun. I want to have some friends.”

“Because you could have drowned. I’m doing my job. Do you want to just not take a shower at all if no one’s reminding you to, and stink?”

Wolf sat there stone-faced, firm in his new resolve. The aide, who hadn’t noticed that, even though Wolf looked the same, everything had changed. She went on and on with the old lecture that life is not all about fun, and finally turned to me as if Wolf weren’t sitting right there and said, “Does he still have other aides? Is he firing them, too? Can he do this?”

“Yup,” I said. “He just did.” 

Artwork By WolfGang Carver, Archival images courtesy of Lisa Carver

Bring a box of tissues and read more from our Hopelessness Issue:

The Secret Drinker’s Handbook

Don’t Get Caught