by Mark Lukach
I had started to call my mom nightly as soon as Giulia was hospitalized. I needed to talk to someone, and as long as I can remember, my mom has been a soothing presence in times of crisis. When I was a little boy and constantly getting sick with asthma and allergies, I was rushed to the hospital a half dozen times in panics of blue-faced wheezing, but I don’t remember feeling scared because my mom was able to maintain such a cool head and stroke my cheek to reassure me that everything was going to be all right.
I tried my best to model my mom when I visited Giulia and put on an ironclad mask of calm and confidence, even though I was quivering with fear on the inside. After each visit, exhausted by the effort, I needed to talk to my mom so I could put down my guard. My parents had moved back to Japan after twenty years away—we had lived there for six years when my siblings and I were in elementary school—and the time difference made it perfect for me to catch her while I lay awake unable to sleep and she was getting started with her morning. Each time we spoke, we inevitably ended up brainstorming what to do next and how I could be more proactive in supporting Giulia.
“I know you are fighting, Mark,” she said to me that night. “But you don’t know what it is to really fight. You are trusting and you give people the benefit of the doubt, which is wonderful in most situations, but not this one. This is your family. This is your wife. She is in the hands of professionals and you have to let them do their job, but you have to fight like hell for her. Just like she fought for you.”
My mom was referencing when I had been the one hospitalized, a year prior, with acute pancreatitis. Giulia visited me one morning as a nurse was changing the sheets of my bed. The nurse had to roll me from side to side to accomplish this, and my latest dose of morphine had almost worn off. I was racked with a pain that a female doctor told me is the closest that men can experience to the pain of childbirth. I was gasping, “Ten, ten, ten,” to indicate that I was a ten on the pain scale. The nurse was focused on changing the bedsheets.
“Stop!” Giulia screamed. “He’s at a ten, he needs medicine. Stop moving him!”
“I’m almost done here,” the nurse said as she shifted me around. “Just give me another minute.”
“Get off of him!” Giulia stormed out into the hallway and kept screaming. “Get this nurse off my husband! He’s at a ten and this moron is changing his bedsheets!”
Other nurses intervened. I was given morphine. The sheets were changed later. The nurse apologized to both of us, in front of the doctor. Giulia’s loyal-to-a-fault protection of me became legendary in our family. Now my mom was insisting that I be just as fierce in my loyalty.
After a week, Giulia started to engage more with her surroundings. She came out of her room more and went to the group therapy sessions that were in the TV room, chairs temporarily pulled into a circle for patients to share their experiences. Sometimes they worked at tables on art projects, which Suoc and I encouraged by bringing boxes of crayons and a sketchbook so Giulia could continue to work outside of her scheduled art time. At our nightly visits, she’d show me some of the artwork she had made. Her first drawing was a brightly colored living room—rainbow couch, happily patterned rug, pastel-teal walls. On one of the walls, Giulia had drawn a dark picture frame, and inside the frame she had written, “The Devil wants me to fail.”
She also discovered the patients’ phone just down the hall from her room, which she used to call me. Dozens of times a day she called, with not much to say except any variety of how psychotic she was, how scared she was, or how much she loved me.
She was powerless in the psych ward. She ate when she was told to, showered while supervised, got to go outside for only thirty minutes a day on a depressing patio, took her meds—and if she didn’t, she was pinned down by orderlies to have the medication injected into her hip.
The phone was a rare opportunity for a small display of power, a way to choose how to interact with the world. I told Giulia that if she wanted me to visit, all she had to do was call, and I would come. Every morning, she called and asked me to visit, just as I had anticipated. I couldn’t conceive of not visiting her.
Then one day, she didn’t invite me. Although she had called several times that day, she had never said anything about wanting to see me. I hadn’t asked her either, but by six thirty p.m., I was lost. Was I really supposed to not visit? I jumped on the Vespa and motored off to the hospital.
I signed in and went to Giulia’s room, where she lay on her side, looking at the wall.
“Hi, honey,” I said to her back.
She slowly rolled over, saw me, and rolled back to the wall. “I didn’t invite you here today.”
I had grown pretty good at talking at Giulia rather than with her, so I brushed off her comment and rattled off some of the stuff I had done that day. But she just rolled back over and said, “I didn’t invite you here today.”
So I sat at her doorway in silence. I had nothing else to do. My entire life revolved around these visits. When I wasn’t in the hospital, I was on the Internet researching, on the phone seeking advice, on the beach by myself, watching the ocean, crying. I had nowhere else to go, so I watched her breathe. I counted the square tiles on the floor. I waited.
About twenty minutes into the silence, Giulia rolled back over for a third time and said in the same deadpan tone, “I didn’t invite you here today.”
I continued to stay in the doorway. I thought I was making an important, positive statement: I wasn’t going anywhere.
The ninety minutes of visiting hours wound down, and with only a minute left I broke the rules and tiptoed up to her bed. She heard me approaching and rolled onto her back. I leaned down and broke another hospital rule by kissing her on the forehead. “I love you, Giulia. I’m glad I came to visit you today.”
She looked me in the eyes and said again, “I didn’t invite you here today.”
Sometimes I visited Giulia with Suoc, and sometimes I visited by myself. Either way, I almost always found a parking spot on the same block, one street over from the hospital entrance, near a restaurant with big glossy windows. After a half dozen nights of parking in the same area, I looked inside those windows and saw the beautiful hostess who worked there smiling at me. I hesitated from my hustle to the hospital, startled to catch her eye and her broad smile, and then put my head down and kept going for my nightly visit.
The next night, she was there smiling at me again. This time I gave her the slightest smile in return. The following night, the same woman, the same welcoming smile.
To her, I was probably a guy who lived in the neighborhood, on his way home from his job, and from the way she smiled I could tell she was hoping I would come inside, chat, maybe exchange phone numbers. She couldn’t possibly know that I was parking in the same spot to visit my psychotic wife on the third floor of the hospital, the floor that needed a special elevator for access.
But each night, the hostess was there. I returned the eye contact, never lasting more than a fraction of a second, but that moment of connection through a restaurant window was my one escape from hell. It wasn’t a hell of my own creation, but one I got sucked into, so it became my hell. This was my moment of rebellion.
I looked through the window and saw in a flash an alternative: a charmed life full of joy and laughter. I knew that life well because I had been living it with Giulia. I looked into the hostess’s face long enough for it to blur into Giulia’s, and I was so full of rage that this life had vanished. I was mad at Giulia, and her illness, and the nurses and doctors, and then mad at myself for becoming a resentful husband longing for an escape, an escape into a life I thought I already had.
I never went inside to say hello. I never even paused long enough to break my stride. I always broke eye contact first, put my head down while stuffing my feelings back into the pit of my stomach, and rushed down the street to the hospital.
No one understood what was going on with Giulia. She had shown no hints of instability before this breakdown, yet her psychosis was uns
hakable. The daily dosages of medication contained a variety of antipsychotics: Geodon, Seroquel, and Depakote, in addition to mood stabilizers to slow down her continued paranoia of religious doom. While I theorized that Giulia was in some sort of a breakdown owing to stress and sleeplessness, no one on the medical team definitively knew what caused it.
After a week, the lead psychiatrist at the hospital called for a family meeting. He didn’t invite Giulia, and I didn’t think to include her either. She was still so lost in her delusions and easily agitated. The doctor had approached Giulia on several occasions to talk about plans for recovery, but she aggressively shut him down every time he brought up the topic. This meeting would be with the family, but not with the patient.
Romeo had since returned to his job in Europe, and Suoc was intimidated by such an important discussion in a foreign language. So I went alone. I brought my laptop, so I could act as a stenographer and report back on the conversation.
I didn’t tell Giulia I was coming. The meeting was during off-visiting hours, and I didn’t want to disrupt her sense of the routine. Giulia’s social worker met me at the glass door, and we tiptoed off to a back office, but Giulia saw me when she rounded a corner and smiled, so we stopped to say I was there to talk to her doctor, and I would be done in just a few minutes.
Giulia’s social worker had been remarkably compassionate with me and tolerated my multiple calls a day to her. She was the one person who seemed to recognize how difficult this was for me, too. She led me into an office that felt like a faculty room at an elementary school: large round table in the middle of the room, with art supplies stacked to the ceiling on shelves along the wall. “For art therapy,” the social worker explained.
Giulia’s doctor joined us, as did the Kaiser case manager, who would ultimately be the one to facilitate her discharge out of this hospital and into Kaiser’s care.
After introductions, the doctor began.
“Giulia’s most pervasive symptom, as we all know, is psychosis,” he said. “Psychosis is associated with several severe mental illnesses, and Giulia is not a textbook case of any one of them. She has had no symptoms until now, at age twenty-seven, which makes schizophrenia and borderline personality disorder seem unlikely. She has also never been manic before, which would make bipolar feel equally unlikely.”
I already knew all of this. I had been researching these illnesses online relentlessly, and I looked for every possible reason to exclude Giulia from one of these life-altering diagnoses. I held on to hope that her affliction was something else. Giulia simply didn’t fit neatly into any of the categories I’d read about. Surely, I told myself, there was another answer. Surely hers was a momentary and singular setback. I wouldn’t dare believe anything else. I had been leaving messages on the doctor’s voice mail almost every day, deluding myself that I could convince him that Giulia was different.
“Based on which medications she has reacted positively to, and which she hasn’t, my working diagnosis is that Giulia is an extremely rare case of schizophrenia that has not displayed itself until adulthood. The technical term for what she is exhibiting is schizophreniform, which is basically the early stages of schizophrenia. That’s what I suspect right now. Giulia has schizophrenia.” His voice was steady and low.
The first time he said the word schizophrenia, I thought I must have misheard him. But he was clear with his final assessment, which felt like a death sentence. Our normal life together disappeared with a single word: “schizophrenia” dislocated my heart. Giulia would never be the same. Schizophrenia meant that the psychosis would come back to haunt her countless times for the rest of her life. She would never again be able to truly trust her own mind. She’d probably never be able to return to her career or her dream of becoming a marketing director by age thirty-five or having three kids. With one word, I had lost my wife and gained a lifelong patient. I put my head down and sobbed. I had tried so hard to stay cool in my interactions with the hospital team, but I couldn’t anymore.
Because I was sobbing, I didn’t hear Giulia knocking at the door or see the doctor get up to open it a crack and tell her that we weren’t ready to talk with her yet. Nor did I see as she insisted and pushed the door open. I didn’t know she was there until I felt her hand on my shoulder, and I looked up and saw the worry in her face.
“What’s wrong, Mark?” she asked me tenderly. “Why are you crying?”
I ached with sadness, but I gulped it all down with one swallow. “Nothing’s wrong, Giulia,” I said, forcing a smile, my eyes stinging with tears that I pretended she didn’t see. “We were just talking about you coming home, and how you just need to take your medicine, and that we are all so proud of you.”
Everyone else nodded in agreement.
After the meeting, I returned to San Francisco’s four-mile stretch of beach. Ocean Beach gets relentlessly hammered by all sorts of weather, wind, and waves, which makes it perfect for getting lost. I walked Goose in my bare feet with my hood up to hide the sadness I wore on my face.
A friend of mine told me that I had to do just like they say on the airplane: I had to put on my oxygen mask and take care of myself first, before I could put on Giulia’s. The first three days of her hospitalization, I barely slept or ate, and when I did, it was to binge on junk food. I felt like hell and was sinking into helplessness. I tried to talk myself into how, to be Giulia’s protector, I had to be rested and clear. If I didn’t put on my mask first, I would pass out, and then I’d be no good to anybody.
The waves looked fun enough, double overhead with a slight onshore wind, plenty surfable but far from perfect, which meant that the lineup wouldn’t be too crowded. I went home and got my wetsuit and board. I’d loved to surf as a kid on the East Coast, and when we first moved to San Francisco, I was able to surf regularly for the first time in my life.
I paddled out that day to try to quench an existential thirst, throwing myself into the ocean to grapple with the implications of Giulia’s psychosis. I paddled hard, pushed myself under waves. I wanted to feel their lash on my back and hear their rumbles above me. Ocean Beach is notoriously brutal. On big days, it can take upward of an hour of relentless paddling to get out to the lineup, and the surf was big that day. I happily swapped out one form of suffering for another.
Once past the breaking waves, I sat on my board, floating peacefully. Coldplay’s “Viva la Vida” played over and over in my head, which was odd since I’d prefer to have any other music in my head rather than Coldplay. But Giulia loved the band, and especially that song, a staple soundtrack for our nightly dishwashing dance parties. Those carefree days felt buried and removed, but I couldn’t shake the song.
It’s about a king who had everything and then, in a flash, lost it all. A man who used to rule the world. That just about summed it all up for Giulia and me. We’d been so charmed, and we both lost everything.
Strangely, it’s a sad song that doesn’t sound sad. It’s almost celebratory, and I didn’t understand why until now. I had been jealously guarding my role as Giulia’s husband. I hated the situation but liked the power and responsibility of being the one talking to the doctors. I liked coordinating the calls. I wanted to be at the center of her recovery. I was her king, right? If there was a key that would unlock her madness, I would find it.
As I floated on my board, I thought most about the question the king asks at the end of “Viva la Vida”: “Oh who would ever want to be king?” It’s too much pressure to rule the world. Control is an illusion. Trying to maintain it is crushing.
I paddled out past the breaking waves into what felt like the open ocean. While I always thought I had faith, that day in the ocean I faced its enormity, and I dove in. I let go of Giulia and released her into the currents. I couldn’t control what happened or how long it would take to get better, but I didn’t feel afraid. In that moment, at least, I felt relief. I didn’t have to rule the world anymore. I never had ruled it anyway.
I heard a soft puff of air and
glanced to my right to see two dolphins swimming together. They were within arm’s reach. They swam right under me and then popped up again on my left side.
I watched them swim away and I thought of how vast and terrifying the ocean is, and I resolved that if they could stay together, so could we.
My sister, Cat, flew in from the East Coast that afternoon. I went right from surfing to the airport to get her. That night we went together with Suoc to visiting hours. Cat wanted to visit her sister, which is what she called Giulia. The two had dropped the formality of “in-law” before Giulia and I had even gotten married.
Giulia greeted us at the glass doorway, her sketchbook close to her chest. She had been waiting. She was still in her hospital gown, even though I had brought her a few outfits to wear. She wore her glasses, and the grease in her hair gave away that she hadn’t showered in a few days. When she saw Cat, she acted as though she had been expecting her, too.
Giulia led us off to a room that had unofficially become “our place” for visits. We had run into the challenge that during visiting hours there weren’t many places to go. We weren’t allowed in her bedroom, the cafeteria was too crowded, and the TV room was too dominated by the TV. A week into her stay, a nurse took pity on us. It was the same nurse who had patted my hand in the waiting room the day I missed Giulia’s hearing. I think the nurse realized that the best way to deal with a spouse who showed up to everything early, armed with fifty questions, was to make whatever little accommodations were available. She had led us to an unused sitting room with a few couches that was locked, except that she was there to unlock it. And now we had a place to go to when we visited.
Giulia sat us three visitors down on a small, vinyl couch that creaked under our weight. We sat shoulder to shoulder as Giulia pulled up a matching chair across from us. She moved slowly and with control, and once we were all settled, she opened up the sketchbook.