Wolf as he sees himself going out in the world.
One month before his 18th birthday, my son Wolf was thrilled to receive invitations from galleries in Melbourne and New York City to exhibit his paintings of mythical creatures, herbivores, aliens, religious imagery, and cities destroyed by solar flares. The bad news is that the showings are scheduled for the summer of 2013. Wolf may not be alive then. At least according to the call I received from one of his doctors, suggesting that he and I begin sessions with an end-of-life grief counsellor.
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Wolf was born with a microdeletion in his 22nd chromosome. The resulting medical conditions have rippled out into ever-expanding rings of pain; each attempt to fix one problem results in another. The more tests and treatments and medicines he is prescribed, the sicker he gets. The sicker he gets, the more tests and treatments and medicines he is prescribed.
At various points in his life, Wolf has been diagnosed as schizoaffective, bipolar, ADD, OCD, and ODD, and he’s also been undiagnosed with these disorders. Finally, the doctors settled on NOS – “not otherwise specified.” The US Department of Health claims that 20 percent of Americans are mentally ill, and even questioning authority is considered by some to be a disorder. If you fell into their diagnosing hands, who knows what they would find? Wolf has never had a break from his diagnosers.
I am grateful to science for saving Wolf’s life at three weeks old when his heart failed; I am grateful to psychiatry for creating medications to stave off crises that, without intervention, could have been disastrous. I am grateful to the many giving doctors, nurses, therapists, teachers, and aides who have taken his little broken body and mind into their hands and hearts to infuse them with more life. But somewhere along the line they – and I – forgot that eventually we would have to step away and give that life back to him.
When the grief counsellor was recommended, Wolf was already seeing three therapists weekly: one for speech, another for behaviour modification, and one to monitor psych meds. If they were not able to really help him live, why should we bring in another to help him die? Between the three specialists monitoring his thoughts and the 11 in charge of his physical systems – circulatory, immune, gastroenterology, ear-nose-throat, etc. – Wolf was on 16 medications. Blood tests and bone scans every couple weeks. Untold cups peed and pooped in, refrigerated and delivered. MRIs. Any rashes? Any thoughts of hurting yourself or others? Any delusions? Have we met our goal to interact with peers appropriately 75 percent of the time? Have you developed hair on your scrotum? Let me see. Any tenderness around the nipples? I’m just going to insert this barium into your G-tube.
Home was no sanctuary. So many times he had to fast for 12 hours to prep for a test or leave a play date early because I’d forgotten to pack all the equipment he needed or cut a vacation short for an appointment or get up at 5 AM for the drive to Boston Children’s Hospital. Sleep wasn’t a refuge, for him or for me. One night, while I was having a really nice dream about trying on bathing suits (and I looked good in every one of them), the telephone, which I kept right by my head, ripped me out of my sleep. A nurse practitioner had just read the results of Wolf’s latest calcium-level test, and her voice was an insistent alarm clock.
Nurse Practitioner: “The doctor wants to double his calcium intake.”
Me: “He’s still throwing up every day. I don’t want to increase his calcium.”
Nurse Practitioner: “You have to. If it gets much lower, he could have a seizure.”
Me: “Could have a seizure. With the vomiting and nausea, he is starving to death.”
Nurse Practitioner: “I see. I’m feeling like you need to come in and touch base with the doctor. Are you feeling that?”
Me: “No. Wolf and I have up to five appointments a week, every week. I’m not feeling like I need to touch any base on an issue we’ve already gone back and forth on.”
Nurse Practitioner: “I’m going to put you on hold, because I need to get the doctor in on this… I have the doctor standing right behind me, and she says his calcium needs to be doubled.”
Me: “He can’t take it. He’s going to be throwing up ten times a day.”
Nurse Practitioner: “Well, we agree that the calcium needs to be increased, so you’re going to have to double that. We’ll call you back in a week or so and talk about how it’s going. That’s all I have for you now.”
I doubled his calcium.
The Easter Seals aide who accompanies Wolf to his volunteer animal-care job emailed me the next day: “Wolfgang threw up earlier and just threw up again while we were trying to eat lunch. As he is pouring formula into his tube this time, he says he will throw up again if he has any more. I am strongly suggesting he finish anyway so that he doesn’t starve. Which will hurt him more in the end?”
Wolf at three weeks old.
This was followed by a phone call from a Medicaid rep who informed me that they would be refusing additional doctor overrides on Wolf’s prescription for Ondansetron (primarily used after chemotherapy to deactivate the portion of the medulla oblongata that induces vomiting), the one thing that has been effective at reducing his nausea. At $1,000 a month, the rep said that it was no longer a cost-effective solution.
“He lost 22 pounds this summer,” I replied. “He gained back six as soon as the Ondansetron kicked in, and that is the only thing that kept him out of the hospital, which will cost you a hell of a lot more.”
“I understand how you feel” she said.
“No, you don’t. You don’t understand how it feels to listen to someone you love puke his life out because his insurance company thinks he doesn’t deserve the medicine he needs.”
Medicines order Wolf’s body around, and then his internal directives are changed whenever some number cruncher at an insurance company forces his doctors to compromise treatment. Therapists tell him how to think and behave, what his values are (for instance, he should desire independence). That’s not a personality; that’s a chart. To be “independent” on command is to be utterly dependent on others’ ideas of self.
Everyone occupies a place in Wolf’s head but Wolf. Even the nonprofessionals – myself, his aides, other relatives, the bus driver, other kids – pile on, reminding him of his “goals” and the many ways he is not meeting them. We define what growing up means for him – “doing what you’re supposed to do” (what we tell you to do). We even think it’s our business to tell him how to develop into a man, a space that for everyone else is considered personal and private. Because Wolf’s hormones and executive thinking are delayed, his social skills immature, his body still childish, clumsy, disorientated, and limp, and his disposition passive and receptive, we all live under the impression that his being is an open topic of discussion.
If Wolf hadn’t already been diagnosed insane years ago, we would have driven him there. By constantly discussing how we could buy him more time, we suffocated his will to live. Death by boredom, death by advice tsunami.
“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 hyper-religious, 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 tantalised 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 afterwards.
“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, criticising others for their treatment of him, criticising 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 unsavoury, like cleaning the stinky rabbit cages at the shelter, it’s like his eyes and his skin change colour 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?
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 stabilisers. (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 hospitalised. She said that she’d awoken suddenly at 3 AM worried about him. We’d all been fighting to re-instate 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 hospitalisation,” 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 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
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