by Mark Lukach
Giulia started crying on the other end of the line. “Please, Mark, please come visit me.”
“I’m so sorry, Giulia, I can’t do it today. You told me not to visit, and so I am not visiting.”
“Fine. Thanks, Mark,” she said angrily, and hung up.
Cas looked at me and took a deep breath. He put his arm around my shoulder. “It’s okay, Mark.”
He reached into the back pocket of his jeans, pulled out a small paperback book, and offered it to me. “There might be another way,” he said gently.
The book, R. D. Laing’s The Divided Self: An Existential Study in Sanity and Madness, was my introduction to antipsychiatry.
I didn’t read the book that day. I waited until we got home the next day, and I went out to the beach with Goose as Jonas napped and my mom cleaned the house.
The book was published in 1960, when Laing was just thirty-three years old. At that point, the mental health profession had taken a strong turn away from psychotherapy toward medication as the treatment for mental illness. Laing hated the shift. He hated the premise that psychosis was a disease that needed to be cured. He wrote, “The cracked mind of the schizophrenic may let in light which does not enter the intact minds of many sane people whose minds are closed.”
I grimaced at this thought. What light was Giulia’s mind letting in? That she was the Devil? That heaven was a place on earth?
I flipped ahead a few pages, to read where Laing started arguing that the construction of mental illness is demeaning, even dehumanizing, and is all part of a power grab by the supposed normals to keep psychotics under control. After I read, “I have never known a schizophrenic who could say he was loved,” I threw down the book in disgust. How could anyone say that I didn’t love Giulia? I had done everything I possibly could to support her.
But Laing would not have seen me that way. In his construction, patients are good, doctors are bad, and family members botch things up by listening to physicians and becoming bumbling accomplices in the crime of psychiatry. I was therefore an accessory, a conspiring force to make Giulia take medication that made her distant, unhappy, and slow. I justified that the meds kept her alive, so everything else was secondary. I had never doubted the rightness of my motives. I’d cast myself in the role of Giulia’s self-effacing caregiver—not a saint, but definitely a guy working on the side of good. Laing made me feel like I was her tormentor.
I called Cas from the dunes.
“Cas, what the hell were you thinking with this book? Do you have any idea how it feels to read this shit? The last thing I need right now is to be told that I’m fucking everything up and making it worse by putting Giulia in the hospital. Do you have any idea of how stressful this is?”
Cas was patient. He knew me well and had anticipated this reaction. “Mark, I’m only trying to show you that there might be another way,” he said.
“What does that even mean, ‘another way’?” I demanded.
“It means that maybe the hospital isn’t the best place for Giulia,” he said, choosing his words carefully. “Maybe taking all of these pills isn’t the way for her to get better. Maybe it is, but maybe it isn’t. At least consider that there are other options.”
“If she’s not in the hospital, what else am I supposed to do?” I yelled. “You think I can take care of her by myself with Jonas in the house? As she rants and raves about heaven being a place on earth and stays up all night? Are you fucking kidding me?”
Cas stopped me there and got very firm with his tone. “Mark, if you were to slip over a cliff, and all you had was one branch to hold on to, you would hold on to that branch for dear life. But you might be ignoring the other things that are there for you to grab on to, things which are out of your range of sight, things which others must show you.”
“What the fuck does that even mean?” I usually loved Cas’s parables, but I wasn’t in the mood. “What does Laing say I should be doing, Cas? If I’m doing it all so wrong, and I’m incapable of loving Giulia, then what should I be doing?”
Cas returned to his initial gentleness. “I don’t know the answer to that,” he said. “I will never know. The answer is not up to me. It’s up to you and Giulia.”
“Well, I can’t exactly talk to Giulia about that right now.” I slammed down the phone.
Giulia’s days in the psych ward added up. Before I knew it, we exceeded twenty-three days and were now in unchartered territory. Giulia was looking better, but she was easily irritated, and she still had occasional slips into delusional thinking. On day twenty-five, they moved her out of the acute section to the non-acute section. On the other side, she had more freedom to move around, more access to the outdoors, more activities, and substantially more patients to talk to. She made a few friends, one in particular named Violet. Giulia and Violet spent hours each day walking the halls together, arm in arm, listening to an old iPod that the hospital let them borrow, an earbud apiece, Coldplay’s “Yellow” on repeat the entire time.
The question of Jonas visiting became more pressing, since he was allowed on the non-acute side of the ward. Giulia’s doctor was strongly in favor of it. She even arranged for a back room to be cleaned out so the three of us could have some privacy. I asked Giulia all the time if I could bring Jonas to the hospital. “I don’t want him seeing me in this place,” she said day after day. “I just want to get the hell out of here and I will see him at home.”
Dr. Franklin and I kept pushing, and Giulia relented. Suoc, Jonas, and I climbed into the car with a couple of bags of toys and went to visit Giulia.
In the back room we laid out a blanket, plopped Jonas on it, and scattered toys to coax him to crawl. He was so active with his rolling and sitting up, and I guessed that he was going to be crawling any day now. I so badly hoped that he would do it here, in the hospital, in front of Giulia.
The first visit went well and lacked the drama of the brief visit when Giulia was still in the acute section. Giulia agreed to another visit a few days later. The visits with Jonas were a welcome relief from my solo trips. Giulia and I had run out of things to say, just like before. Thankfully, she wasn’t obsessively trying to explain her delusions to me during our visits anymore. Instead, her focus was entirely about coming home. It became the only thing she wanted to talk about, as if I had control over it. I couldn’t give her concrete answers, which made her more impatient. Our visits alone were unbearably tense.
“I want to get out of here,” she’d say. “When can I come home?”
“When the doctor says you’re ready,” I’d respond.
“Why do I have to wait for their permission? I want to go home. I should be able to say when I go home. This is ridiculous.”
“I want you to come home, too. But we have to wait for the okay from the doctor.”
Jonas’s presence changed everything; he became the entertainment and conversation. We watched him, and played with him, and urged him to crawl for that toy that was out of his reach, and cheered him on, and marveled at the amazing little person we had made together.
I loved the visits with Jonas, but I also hated them. I hated that our son was a visitor at the psych ward on the day he turned six months old. I hated that Giulia was tentative and scared of how to behave around our son. I hated that these visits were the only way to have my family together.
Jonas did not learn to crawl in the hospital. He learned at Ocean Beach. He saw a sand dollar and crawled over to it. Suoc and I hooted and hollered together and took pictures and videos.
But I didn’t tell Giulia. We were only a few days away from Thanksgiving. I thought there was nothing wrong with a little white lie, so why not pretend that Jonas didn’t first crawl until he was there in the hospital with her, so she could experience the same pride that I felt?
I called the hospital to see if it was okay for us to bring food for Thanksgiving, and a lot of it, to share with patients and staff, and they said that would be fine.
Suoc and I spent Thanksgiving Day c
ooking jambalaya with shrimp, chicken, and sausage, focaccia bread, and cookies.
It took three round trips from the car to the psych ward to unload all the food, and each trip I had to buzz the bell to be let in and have the staff check to make sure that what I had with me was safe. We set up the food in our back room, and Giulia walked around the halls and invited everyone to come and eat.
Giulia sat with Jonas in her lap as people came and left. I tried to introduce myself to people, but no one wanted to talk. They just wanted a heaping plate of food and then to get out of there.
After we finished eating, I proposed that we go around the room and say what we were grateful for.
“I’m grateful for Giulia, Jonas, and Suoc,” I said. “I know that none of us wants to spend Thanksgiving here, but at least we are together. Family is what matters most.”
Suoc went next. “I’m thankful for Giulia, Jonas, and Mark,” she said.
Then it was Giulia’s turn.
“I can’t think of anything I’m grateful for,” she said.
“Nothing?” I asked.
“Nothing,” she repeated.
We sat in silence, the air sucked out of the room, and then almost on cue, Jonas raced across the ground, crawling for a toy, the execution of my grand plan.
“Look at that,” Giulia said blandly. “Jonas is crawling.” She barely moved, none of the cheering or dancing that Suoc and I had shared.
I abandoned the ruse. She was still too far gone and too medicated to experience these milestones with Jonas. “Yup,” I said. “He started a few days ago. He’s getting so fast already. Our little Man in Motion.”
We watched him go from toy to toy, his peals of laughter bringing us occasional smiles, but everything felt wrong. The jambalaya was too spicy, the bread burned on the bottom. We weren’t supposed to be here. It was all so wrong. We all felt it, except for Jonas, who kept crawling faster and faster and squealing in delight with himself.
nine
November 2012
We had our final family meeting on Giulia’s thirty-second day in the hospital. The full team gathered—Giulia, Dr. Franklin, two nurses, her case manager, and me. Giulia was the first to speak.
“I want to come home to my son and my life. Enough of this. Let me out of here.” It was a short, forceful declaration. She sat back, crossed her arms, and waited for a response.
“We understand that, Giulia,” Dr. Franklin said. “We’ve understood that for over a week now. It is the only thing you talk about anymore.”
“Well, of course it is,” Giulia responded. “You get to go home each night. I don’t.”
As I sat and listened, I thought of Cas’s “other way.” How would I feel if I had been locked away from my family for so long, unable to leave on my own terms? Maybe Giulia’s irritation was a reasonable reaction to her situation and not a sign that she was “crazy.”
“You’re right, we do go home each night,” Dr. Franklin said. “But we’re concerned by how irritable you are about this. You are so impatient about going home and exhibit a lot of anger about it. That makes us worried.”
“I’m not irritable,” Giulia said with obvious irritation.
One of the nurses chimed in. “Giulia, you screamed at me today because I said I didn’t know when you were going home. That’s not a nice way to treat people.”
Dr. Franklin added, “That kind of agitation has us worried about Jonas. What happens if he does something that doesn’t feel right to you, like he wakes up crying in the middle of the night? Are you going to be angry with him?”
Giulia sat sullenly, refusing to respond, so I interjected, after staying silent for what felt like an eternity.
“Have we considered that maybe Giulia’s agitation isn’t part of psychosis or mania? She’s been in here a long time. Maybe it makes sense that she’s so frustrated.”
I had never rebelled against the doctors before, and I was scared to do it now, but Laing had gotten under my skin.
Dr. Franklin sighed. She could see that our long-standing alliance was cracking.
“Yes, I hear what you’re both saying.” She sounded defeated. “Which gets to the point of this meeting. We’re here to talk about discharge.”
Giulia squealed with delight.
“We believe that Giulia can go home,” Dr. Franklin said. There was no joy in her voice. She almost sounded as if she were regretting the words as she said them. “Tomorrow.”
Giulia jumped out of her chair and into my lap for a hug.
“But we are releasing you Against Medical Advice, Giulia,” Dr. Franklin said, interrupting the celebration. “It will say this in your medical file. We are letting you go home, but we don’t think that you’re fully ready for it. We simply recognize that the hospital is no longer doing you good, but we worry about the strains that the circumstances will put on your husband and your son.”
“Against Medical Advice . . . does that mean you’re worried about Jonas’s safety or something?” I asked. “Because don’t forget that I’m not working, so I’ll be home all day with Giulia and Jonas. And we also still have help. Giulia’s mom is in town, and my mom gets here tomorrow.”
“Yes, I know,” Dr. Franklin said. “We aren’t worried about his safety. Giulia wouldn’t be going home if it was a matter of safety. We’ve seen Giulia enough to not see her as a threat to people. But still. She is in a fragile state and it’s asking a lot for her to be taking care of a young child. We think she needs more time to settle down, but we can see that she’s not going to listen to that request. That’s why this is an AMA discharge.” She was clearly unhappy.
It was a tremendous relief to know she was coming home. I was thoroughly fatigued by driving an hour in each direction to visit Giulia, only to be bombarded for an hour about why I wasn’t fighting to let her come home. But Dr. Franklin’s disapproval had me uneasy, as though I were letting the doctor down, and maybe even letting Giulia down, giving in to Giulia’s demands just because I was tired of hearing them, not because she was actually ready to come home. And then the nagging voice of Laing had me wondering if the doctor or I had any right to make these decisions in the first place.
“There are a few conditions of your discharge,” Dr. Franklin said.
“Anything,” Giulia declared.
“First, you are to begin an outpatient program with UCSF starting the first day you are discharged. You leave tomorrow, we have arranged for you to begin their program the following day. It’s five days a week, nine a.m. to three p.m., a full-day program.”
“Fine,” Giulia answered halfheartedly.
This softened my unease. Giulia was going to be in a program for the bulk of the day, substantially more than the three and a half hours of IOP on Monday, Wednesday, and Friday. Not that I didn’t want her fully home, but it would certainly make the prospect of having Giulia and Jonas at home together feel more manageable.
“And you have to take your medicine, no matter what,” Dr. Franklin said. “If you don’t take your medicine, there is nothing Mark can do about it, and you will have to go back to the ER.”
“Fine, whatever it takes,” Giulia said.
With that, Giulia was coming home. It was with an asterisk, like a baseball record that has been tainted by steroids, but she was coming home.
I had exaggerated the claim that we had help at home. Suoc was leaving the day of Giulia’s discharge, back to Italy. She had spent five weeks in the U.S., bouncing back and forth from San Francisco to New York. She was just as worn down as I was.
My mom was due to arrive the day of Giulia’s discharge, but that would be her last week with us as well. My dad’s job was transferring back to Delaware at Christmastime, and my mom had to go back to Japan to help with the move. We had help for the last five weeks, but now that Giulia was coming home, Team Grandma was going to be around for only another week.
I brought Jonas and Suoc to the hospital to pick up Giulia, so they could maximize the few remaining hours they h
ad together. Giulia had seen her mom only a half dozen times over the past five weeks.
It was pouring rain. I left Jonas and Suoc in the car. Although Suoc and I continued to disagree about how to care for Giulia, and even how to raise Jonas, I felt for her. She waited five weeks for her daughter to get better, to come home and be with her family. And now the day it was happening, Suoc was leaving.
I walked into Giulia’s room. The meeting from the night before had rattled me. I couldn’t ignore Dr. Franklin’s words: “Against Medical Advice.” It sounded so ominous, as though the doctor saw a storm on the horizon that I didn’t. Giulia had already packed up her belongings and signed her paperwork, so we left.
We ran through the rain and puddles together out to the car. Before she got in, Giulia turned back and looked at the building. She needed to see what it looked like from the outside. She had lost a month of her life to the inside of that building, but she didn’t even know how it looked from the outside. Suoc knocked on the window, but Giulia ignored her and stood still as a statue in the rain, taking in the sight of the building and the sensation of freedom. Then she finally jumped in the car.
On the drive home, Giulia talked to her mom and Jonas, but she also got lost looking out the window. Halfway there, she asked how much farther we had to go and marveled at how far the hospital was from our house and what a hassle it must have been to drive there every day.
My mom had landed and taken a cab to the house while we were gone and prepared lunch for all of us to eat. Suoc sadly reminded Giulia that she had to leave soon. Giulia, medicated and noticeably overwhelmed with being home, didn’t have much of a reaction. Which made Suoc even more upset to leave. She departed soon after lunch, isolating herself into her uncomfortable sadness.
We spent the rest of the day around the house. I smelled a dirty diaper and announced that I was going to change Jonas, and Giulia jumped at the chance to help. She took him to the changing pad, laid him down, and just sort of looked at him. I sat in the glider and gave them space, but after a few minutes of unproductive attempts to unsnap the buttons and find the wipes, we switched places.