by Mark Lukach
“No,” Giulia said, shuffling out from under Jonas. “You can take them hiking. I’m going to go out and run a few errands now that you’re home.”
“Okay . . . ,” I said, my tone once again accusing, even though I said only a single word. I didn’t know that Giulia had plans to go out for the morning.
“You got to go surfing for four hours while I took care of Jonas, so now I get to go out for four hours.” She sailed through our house into our bedroom to change. I trailed behind her.
“Yeah, but you guys just watched a movie. You didn’t take Goose out. You didn’t even change Jonas out of his pajamas, or the diaper he has been in all night. So when you say you ‘took care of him’—” I hadn’t even finished my thought before Giulia erupted.
“How dare you tell me how to spend time with my son?” Giulia yelled. “I don’t tell you how to spend your time. Let me make my own choices. I’m sick of you telling me how to run my goddamn life!”
She was changed and out the door within a few minutes. She came home almost precisely four hours later, just as she had promised.
Our old patterns had found us, after all.
The further Giulia’s episode faded into the past, the more I thought about Laing. I no longer had the knee-jerk reaction of wounded pride. I stewed on some of his concepts, especially the skewed power dynamic that certainly existed in our family. Laing boiled down the treatment of psychosis to power. Who gets to decide what behavior is tolerated? Who chooses how and when to enforce the rules? Even with Giulia’s psychosis faded, we battled over those questions.
Cas and I had long ago patched up the tension created when he gave me Laing’s book. I began to delicately ask him what exactly his “other way” might entail. He was a self-described “psychic adventurer” who had wrestled personally with and researched intensely issues of identity, fragmentation of the psyche, and power in relationships while in a PhD program, so I figured he had plenty of ideas. We now visited Cas and Leslie more regularly, and Cas and I carved out Sunday mornings for just the two of us. He hopped on his mountain bike, I put on my running shoes, and we rode/ran out to Arch Rock on Point Reyes together and talked the whole way. Our trail was mostly flat, and Cas patiently pedaled his bike at my running pace, which meant that he did most of the talking and I grunted in agreement as I tried to keep up. Our conversations were more like philosophy lectures, sprinkled with advice from a close friend.
“I had a torrid love affair with Nietzsche,” he said on one of our outings. “I fell deeply for Nietzsche in every possible way, but then he crushed me like an empty Coke can, and left me in ruins,” Cas continued. “You need to read Thus Spoke Zarathustra, because I think you’ll see a lot of yourself, and what you’ve tried to do in caring for Giulia, in his concept of the Superman. But first you should read Jung’s Man and His Symbols. That’s going to speak to you a lot. It’ll really give you a new perspective on Giulia’s delusions, and what they might be hinting at.”
While Cas gave me dozens of book recommendations and theories to consider, he always left it up to me to decide how to proceed. “It’s not up to anyone else to dictate the terms of your relationship with Giulia, except for you and Giulia.”
Even with this prodding, I was intimidated to address questions of Giulia’s health, and the way we dealt with it, directly with her. So I did some reading and research on my own, picking at the uncomfortable questions I had about Giulia’s time in the hospital and some of the medication she took. I had already exhausted the Internet’s capacity to explain to me what side effects might look like. I needed to hear from people who felt the same degree of frustration with their recovery treatment that Giulia felt. I was so emotionally absorbed in her recovery that I had a hard time hearing her without taking things personally. But if I could read about strangers, I could listen without feeling judged or be relieved from trying to control the outcome.
On the pretext of doing research for a magazine article, I e-mailed and called various people who were outspoken critics of psychiatry. I talked to Robert Whitaker, author of Mad in America and Anatomy of an Epidemic, who kindly schooled me on the history of antipsychiatry in its many manifestations. Laing was one of the first, and many followed in his footsteps to create the Mad Pride movement, which modeled itself on gay pride, reclaiming the word mad as a positive identifier instead of a slur. Mad Pride came out of the psychiatric survivor movement, with its goal of taking mental health treatment decisions out of the hands of doctors and well-intentioned caregivers and putting those decisions into the hands of patients.
Even though I had my frustrations with Giulia’s two hospitalizations and outpatient programs, I didn’t hold any of the medical professionals at fault. No one had acted with malice toward Giulia, even the nurses from the first hospital, who were clearly overworked. There was only one psychiatrist to manage a ward with a revolving patient group of thirty people. No wonder he didn’t return my calls. They were all doing the best they could, often in overworked and overcrowded circumstances, in a field of medicine that the mainstream expected to be objective and scientific but the insiders knew was far from it.
I also spoke with Sascha Altman DuBrul, one of the founders of the Icarus Project, an alternative medical health organization that calls mental illness “the space between brilliance and madness.” I was nervous when I spoke to Sascha. I wanted to hear his stories, but I was also there to ask for advice, and I feared what he might say. Was I doing everything wrong? Was I part of the problem?
Sascha instantly put me at ease. He started by arguing that each person’s experience with mental health is unique. This may sound obvious, but psychiatry, to some extent, has been built on generalizations. Sascha didn’t like how psychiatry stuffed patients’ singular experiences into one of a handful of available boxes.
“I have a diagnosis of bipolar disorder,” Sascha told me. “While that term can be really useful for explaining some things, it’s lacking in a whole lot of nuances.” He said he found the label “kind of alienating.” All that resonated with me. For Giulia, too, none of the diagnoses seemed quite right. In her first psychotic break, psychiatrists ruled out bipolar disorder; in her second, they were certain she was bipolar. Besides, as Sascha put it, no matter the diagnosis, psychiatry “gives you terrible language for defining yourself.”
As for medication, a constant source of tension between Giulia and me, the Medicine Nazi, Sascha believed that the question of whether or not to use pharmaceuticals was more nuanced than just yes or no. The best response might be maybe, sometimes, or only certain medications. For example, Sascha himself took lithium every night, because after four hospitalizations and more than a decade with the label bipolar, he was confident that the medication was a positive part of his care. Not the whole solution, but a piece.
All of this was very comforting, and far from the guilt and judgment that I feared Sascha might heap on me, but I really perked up and started paying careful attention when he introduced me to the concept of mad maps. Like advanced directives for the dying, mad maps allow psychiatric patients to outline what they’d like their care to look like in future mental health crises. The logic is if a person can define health while healthy, and differentiate health from crisis, that person can shape his or her own care. The maps are not intended to be rejections of psychiatry, though they might be that. Instead, they are designed to encourage patients to plan ahead—to treat a relapse as possible or even likely—in order to give them more control and avoid, or at least minimize, future mistakes.
I loved the concept, but I pushed back on Sascha. “These maps sound incredibly useful, and pardon me for asking this, but do you have any children? Are you married? Did you make your map with your family?”
“No,” he admitted. “I made mine with my best friend.”
“That’s my big issue,” I told him. “Giulia might have a vision for how she wants to care for her illness, but it’s clearly different from mine. And we live together. We share bank acc
ounts. We have a son. That makes things much, much harder.”
Sascha paused for a minute. “We’ve never met before, Mark, we don’t know each other, but I really feel for you, man. You’re trying to do the right thing. That’s the best we can all do.”
In December, Marie killed herself.
She had texted Giulia the day before, saying that she was having a terrible day. Giulia had texted back that Marie was the strongest woman she knew and that everything would be okay. Then Giulia didn’t hear back. Marie’s employer knew of her mental health struggles and that if they couldn’t locate her, they were to call the police. When she didn’t come back after lunch, they called. The cops busted through Marie’s door and found her in her bed.
We heard the news in such a cold, bizarre way. Giulia had written a blog post on our round-the-world travel blog about Marie’s artwork years before, and the night after her suicide, her brother left a comment saying, “What a nice tribute to Marie, we miss her.” As cohosts of the blog, Giulia and I both got an e-mail alert that someone had commented. Giulia was at a party with friends in our old neighborhood, only a block away from Marie’s house, when she got the e-mail. She called me, and all I heard was Giulia weeping. She could barely speak. I drove out to Ocean Beach to pick her up, and I hugged her, but there wasn’t anything to say. Giulia had lost her most genuine companion in her recovery, the one who could immediately understand her based on their shared experiences.
I had long ago given up on the notion that suicide is a cowardly cop-out. I think that anyone who feels suicidal is presented with one of two types of courage. Giulia had one type, which was to face the feelings each day and still choose life. No matter how much life hurt, this courage helped her wake up each day.
Marie had the other type of courage, one I wish no one had. She believed in her feelings. So deep was her sense that things would never get better, and that there was no way out, that she ended her whole world.
Giulia had the first type of courage. But the more she thought about Marie, the more she feared that she might find the second type, and what it would mean for me, and Jonas, and the rest of the people she loved.
“Marie always told me that the second hospitalization is the hardest,” Giulia said the night after she got the news. “It’s the one where you realize that this isn’t going away. I’ve had my second hospitalization. There might be a third, or a fourth, or a fifth. I don’t want what happened to Marie to happen to me.”
“I don’t want that either, Giulia,” I said.
“So how do I avoid it?”
“I don’t know,” I said. “You’ve avoided it so far.”
“I think we need some type of plan.”
I waited for Giulia’s grief to ease before we tried to create a plan. She told a lot of stories about Marie; she cried; she listened to old voice mails and read old texts; but thankfully she avoided a relapse, something I feared might be possible. But Giulia’s grief was clearly not just for Marie. The way she talked about Marie’s death, it was as if Giulia were grieving for herself as well. She knew that it could have been her.
Finally, one evening when we were in bed, after Jonas had fallen asleep, as Giulia was getting ready to watch Friday Night Lights on the iPad, I cautiously brought up the idea of a mad map.
“So, about that plan,” I said. “I think it’s time we talk about it.”
Giulia didn’t say anything.
“I think we should talk about the Risperdal in your medicine cabinet, first.”
“What’s there to talk about? We have Risperdal in the house. Big deal. Are you afraid I’m going to take it all?” Already, she was getting defensive.
“No, that’s not it,” I said. “I’m talking about taking Risperdal as prescribed, in the event that the psychosis returns. I think we need to figure out what it would have to look like in order for you to take it. Last time it was only four nights of no sleeping before you were in the hospital.”
Giulia cut me off. “I don’t want to talk about this, Mark. I’m not going to go psychotic again. I don’t want it to happen, so it’s not going to. Just have some faith in me.”
“I don’t want it to happen, either,” I said. “But it might. You said so yourself. We should make a plan for it now, while you’re feeling good, rather than wait until a crisis hits and I end up making all the decisions for you.”
“You mean like quitting my job for me,” Giulia said, taunting.
“Yes, I mean like that,” I said.
“And refusing to listen to me when I say that I’m ready to come home,” she added with increased hostility.
“Well, I guess that’s how you see it,” I said. “I was just trying to listen to what the doctors said.”
“Or forcing me to take medication I don’t want to take.” She was fired up now.
“Or keeping you alive so you don’t jump off the fucking Golden Gate Bridge!”
“Well, this is a great idea, Mark,” Giulia said, standing up out of bed. “Thanks so much for having faith in me that I’m going to have another psychotic break!” She stormed into the bathroom and slammed the door.
“This has nothing to do with faith, Giulia,” I called out. Giulia locked the door in response. “This is because I realize that we both made huge mistakes in how we handled your hospitalizations. Those mistakes hurt us. Of course I don’t want you to go psychotic again. But I’m not sure how much we’re in control of that. And if it does happen, I definitely don’t want to make the same mistakes again.”
The door stayed locked. Giulia muttered, “Whatever,” so I backed away from the door and returned to bed.
I tried again a week later, after Jonas’s bedtime, when we both were fried, the only chance for two working parents to talk among themselves.
“We really need to talk about what it would have to look like for you to take Risperdal,” I said.
“I’ll take the Risperdal when I’m psychotic,” she said, barely glancing up from the iPad.
“When do you know that you’ve gone psychotic? It’s never been clear to me, it just kind of gets worse with each day that you’re not sleeping. I wonder if you could take it before you get to feeling psychotic?” I said.
She groaned and put down the iPad. “Do you want me to start taking it right now?” she said. “Then I’ll never go psychotic! And I’ll never feel anything, either.”
“Honey, I don’t want to fight,” I said.
My lack of a rebuttal calmed her down.
“I don’t want to fight either,” she answered. “But I don’t want to have to take Risperdal unless I have to.”
“Well, I think that if you can’t sleep, then it’s a ‘have to’ situation. I think that if you can’t sleep one night, you should take Risperdal.”
“That’s ridiculous, Mark,” Giulia said. “One night is not going to do anything. How about after two nights of sleep, I take one milligram of Risperdal.”
“That’s ridiculous, too!” I said. “Last time it only took four nights. And one milligram of Risperdal won’t do anything. Three milligrams, first night, that’s my suggestion.”
“Well, my suggestion is one milligram after two nights.”
The battle lines were drawn. But at least we were negotiating.
We decided to take the conversation to her psychiatrist.
Giulia had seen at least a dozen doctors in the past three years. There were the hospital doctors, the outpatient program doctors, her doctor in the city, and now her doctor in the East Bay. Her new psychiatrist, Dr. Stefania, was very sharp and very convincing. She had a no-bullshit air about her, just as Giulia did. In fact, I think I liked her because of how much she reminded me of Giulia—stubborn, ambitious, focused on a goal.
“So, we need a plan for when to take Risperdal in the event of a relapse,” Dr. Stefania said from behind her desk. “I think if you can’t sleep, you need to take your medicine. Period.”
“Exactly,” I said. I leaned back into my chair in triumph. “Sleep
is so important for you.”
“I know it is,” Giulia said. “But just because I can’t sleep doesn’t mean I should take antipsychotics.”
“Well, then how about this,” Dr. Stefania offered. “If you can’t sleep, you take one milligram by midnight. If that does the job, then you’re fine. You sleep, you go to work. If you can’t sleep, then by two a.m., take two more milligrams, for a total of three. You shouldn’t go to work on three milligrams of Risperdal, so call in sick that day. And call me, so I know you had to take the medicine. And then we will play it day by day.”
“Okay, I can do that,” Giulia said.
“This sounds good to me, too,” I said.
“That it? You guys are easy,” Dr. Stefania joked.
We were both shocked. After only a few minutes with Dr. Stefania, it was done. We had a plan for the Risperdal.
“Now get out of here and go live.”
There was much more to discuss than just the Risperdal, but at least now we had the confidence that we could figure things out. We knew that we disagreed on almost every aspect of our road map, but it didn’t have to be so impossible to find a plan that worked.
We made a point of addressing a different detail each month. In February, we agreed that Giulia would never take Zyprexa or Haldol again. If a doctor recommended it while Giulia was in the hospital, I would refuse on her behalf. In March, we confirmed that if she was hospitalized again, I would not speak to her work and would instead leave all communication up to her assigned social worker. In April, we agreed that since Giulia had medicine and was willing to take it, we would try to wait out the psychosis at home for a little while before racing off to the emergency room. Hypothetically, Giulia would already be on Risperdal and in communication with her psychiatrist, so why not see how things went at home a bit first. In May, the month of Jonas’s birthday, we agreed that he would not come and visit in the hospital.