by Mark Lukach
I brushed off my hesitations and said, “You’re doing great, Giulia,” because she was coming home. She could finally get out of this place.
We finished with the final packing of her stuff, but she was mostly done already. She had showered and put on her freshest clothes. After only a few minutes together, she had returned to a sense of stability and talked about how she couldn’t wait to see Goose and take him to the beach.
We left her room for the last time, then walked together to the conference room, overstuffed with art supplies, for her discharge meeting. She signed countless forms. The only one I can remember made her promise to not purchase a gun for the next five years.
She would start an intensive outpatient program with Kaiser the next day, where she would get a new social worker, a new doctor, a new case manager, and who knew, maybe a new diagnosis, new medications, new therapies. But all of that would come tomorrow. For now, she was coming home.
With the paperwork signed and a paper bag filled with various medications, a nurse led us to the glass doorway, the one that had divided my world from Giulia’s world for the past twenty-three days. I held on to her as we walked out into the waiting room, our first time crossing this plane together. She was weak from the weeks of inactivity and lack of sleep.
We got into the elevator. The special one I had ridden alone so many times.
I wouldn’t let go of her hand. She blinked and beamed as we stepped into the fresh air.
“Wow,” was all she said. “Wow.”
“Giulia, you’re coming home.”
She glanced over at me. I saw some clarity in her eyes, a glimpse of the real Giulia. She looked back at the hospital, up to the third floor.
“I’m coming home. Let’s get out of here.”
four
October 2009
Our bulldog, Goose, sauntered through his days by following the sun from room to room. In the morning, he sprawled out on the hardwood floor of our main hallway, because the rising sun cast a warm sunspot through the large windows. By midday, he relocated to a different patch of sun, in the dining room, his body pressed up against the legs of the table. In the afternoon, it was the breakfast nook. These rooms collectively formed a ring around a central atrium in our home, a space we never really used but loved anyway for the light. Goose agreed and spent his days slowly walking in a circle, moving from one sunny nap spot to the next.
Our dog’s patterns were predictable, so when I brought Giulia home from the hospital, I knew he would be in the dining room, loudly snoring with his tongue stuck out as he slept.
As we pulled into the garage and parked the car, I could sense Giulia’s hesitancy. As much as she wanted to be home, she was scared. She kept looking at me, wordlessly seeking approval and validation. I led her up the stairs to our floor of the house and went right to the dining room.
“Goose, look who’s home,” I whispered to him.
Giulia stood back, watching for his reaction. He normally greets family by pawing at the air, nipping at fingers and ears, his stubby little tail a spastic frenzy. This was the longest he had been away from her. I was nervous he might plow into her with his sixty pounds and knock her over in her fragile state.
But Goose understood. He saw her, walked up to her, and looked into her face with his big brown eyes. Giulia crouched down, put her arms around his floppy neck, and pulled him in toward her chest. He sat there with his head lifted high and welcomed her hug. I had spent so much time fretting how I would deal with Giulia, and here was our dog, in all of his simplicity, giving Giulia exactly what she needed: gentle and unassuming love.
We were home only a few minutes before we were back in the car to go to the beach. Goose dug at rocks, Giulia and I sat in the quiet of the day, a day as beautiful and warm as the day I took her to the hospital. A jogger ran by and Giulia jumped up in alarm.
“Why is she doing that?” Giulia gasped, her hands clutching her face as she backed away from the woman.
“Doing what? She’s just running,” I said.
Giulia rocked back and forth from one foot to the next, a side-to-side sway. Her lips puckered and unpuckered, her hands clasped tightly against her chest.
“This is not good, Mark. She’s running from me. I need to stop it. This was all a mistake. It’s not safe for me here.” She continued to back away.
Since we were finally outside of the hospital and its no-touching rule, I walked up to her and put my arms around her waist. She leaned into me, her frame still so frail.
“Giulia, you’re home. You’re where you’re supposed to be. You’re back with me and Goose, back at the beach, where we belong, together.” I looked into her eyes. They were blank, but searching through her confusion.
By then, Goose had abandoned his rock and had wedged himself between us, to sit on our feet.
“We love you, Giulia, we’re so happy that you’re home.”
Giulia continued to fidget, but after a few minutes she calmed down and sat back on her beach chair. Psychosis waxes and wanes like the tides, and a passing jogger had triggered a fierce return of her disoriented, paranoid thinking. And then just as inexplicably, it faded away. The hospital hadn’t fixed anything. It had only stabilized her, and not even all the way.
The first few weeks went much like our outing to the beach. Giulia was cautious of everything, desperate to feel comfortable and settled at home but trapped in uncertainty. The psychosis seemed like a bad fever that came and went at whim, and Giulia slipped in and out of it several times a day. Sometimes the psychosis had her fixated on religion, sometimes it was intense paranoia, or it might be delusions. Her body language became the visual cue of its return, with the rocking side to side, the puckering lips, the hands to her chest. For me, the transition from being with Giulia ninety minutes a day to all day, every day, was abrupt and demanding. I rarely left her side. The first time I did, to step into the bathroom on the first afternoon she was home, she walked out the front door and was halfway down the block by the time I got to her. I feared it was dangerous to leave her alone, to do whatever she might want, like listen to the voices that were in her head.
Thankfully, there was IOP, the intensive outpatient program at Kaiser, intended as a step-down program from her time in the hospital. On Monday, Wednesday, and Friday mornings, nine a.m. to twelve thirty p.m., Giulia attended group therapy, one-on-one meetings, and “classes” such as cognitive behavioral therapy, art therapy, or dance.
IOP afforded me ten hours a week when I didn’t have to be vigilant about Giulia’s care. I kept my running shoes and surf gear in the back of the car, so when I dropped off Giulia, I sped back to the beach for a bodysurf. If the waves weren’t cooperating, I’d park the car at the base of the Cliff House and change into running clothes and head up the hill to the Lands End Trail, a stunning urban trail that wound along the northwest corner of the city. I loved IOP for providing the rare opportunity to detach from Giulia.
The true merit of IOP was not necessarily in the therapy it provided—which Giulia tolerated but mostly rolled her eyes at—but rather in the regular contact with psychiatrists. In outpatient care, most patients see their psychiatrists infrequently, no more than once every few months. But Giulia was seeing these doctors three times a week, so they could closely monitor the impact of their ongoing experiment with antipsychotics and antidepressants, in the pursuit of the magical cocktail that might heal Giulia. I was learning that psychiatry, and the prescribing of medications, is more art and guessing game than science. She was discharged on the antidepressant Lexapro and two antipsychotics—Geodon and Zyprexa. Although she had taken the Geodon throughout her twenty-three days in the hospital, the doctor from her hospitalization hastily added Zyprexa to the mix in her last few days at the hospital, since it has a reputation of being one of the most potent antipsychotics.
Giulia had initially refused to take her medication in the hospital, but she hated the alternative—nurses pinning her down to inject medication into her hip
. She eventually began to take the pills of her own volition while in the hospital, although she frequently voiced her displeasure with taking them. She knew that if she wanted to be home, she had to take the medication. But she still hated the medication, especially Zyprexa.
That pill in particular became our biggest sticking point. I had researched the side effects of Zyprexa once the doctor had prescribed it and knew what might be coming: acne, increased appetite, weight gain, lethargy. As with all psychiatric medications, there was the worry that it might make her more suicidal as well.
The side effects hit hard. The acne came, as warned. Giulia gained almost sixty pounds in a matter of two months. She had gone from alarmingly thin to the heaviest she had ever been, in only two months.
Worst of all, the Zyprexa slowed her down. Giulia moved as if she were walking underwater, and she thought that way, too. She had a hard time with open-ended questions. “What do you want for dinner?” I’d ask. She’d pause to process. I learned to rearrange the questions so that she could answer with a straightforward yes or no.
“Do you want chicken for dinner?” I’d ask.
Pause. She’d stall for a long time.
“Yes.”
I had observed her sluggishness in the hospital, but those visits were only ninety minutes long. Long enough to notice, but short enough to forget in the avalanche of all the other worries at the time. While she was at home, there was no forgetting. The side effects were everything. Every step, every minute, was tainted by side effects, a life in forced slow motion, an engine stalled with no signs of a restart.
But the Zyprexa was working. Giulia’s racing delusions had slowed down, along with everything else. Her outbursts of clasped hands and worried rocking back and forth were gone. The medicine was doing its job.
Giulia had a hard time seeing it that way. Zyprexa only meant side effects to her. If given the choice, she would have stopped the medication immediately, and she made that clear to everyone. So the doctors ordered that I watch Giulia take her medication, to ensure that she swallowed the pills. She later told me that she had mastered a technique of concealing her pills under her tongue or in her lip, even when I made her open her mouth to prove that she had swallowed.
The pills caused additional tension because Giulia, still a suicide risk, couldn’t have direct access to her prescriptions. I changed up hiding spots almost daily. I first hid them in the pocket of a jacket hanging in the hallway closet for a day, then in a box of cereal, and then behind our DVDs of Arrested Development. It got to the point where I would forget where I put them and had to search for them myself, while trying to conceal the hiding spots in the first place so Giulia wouldn’t be clued in on where to look for them in my absence.
Zyprexa became the symbolic representation of the impossible choices that mental illness brings into relationships. Giulia wanted all of the Zyprexa, to kill herself, or none of it, which would probably usher in a relapse. She wanted nothing to do with the prescribed dosage. But the current dosage seemed to be helping her, even though the side effects were brutal.
We never discussed a plan. I didn’t see any other choice except to follow what the doctors told us to do. We had to keep her out of the hospital and her mind free from the torments of psychosis. We developed our silent, sad routine. Giulia sat on our bed and waited with the bedroom door closed as I dug a few pills out from the hiding place du jour. When I returned I handed them to her with a glass of water and we avoided eye contact. After she drank them down, I checked her mouth. I began to see her mind like an old television set, one with a dial you had to turn to change channels. She had gotten stuck between channels, and all that was broadcasting in her mind was crackling white noise, which drove her mad and scared me to death. The medicine was like turning down the volume. The channels might still be stuck, but at least the set was no longer spewing the deafening static. The volume had to be lowered until the channels could work again.
There was relief, but a potent sorrow in this. With the volume down, Giulia’s entire life was on mute. She wasn’t psychotic, she wasn’t delusional—she just kind of wasn’t.
Our days also fell into a routine. Our life was like a lazy Sunday afternoon, on repeat, ad nauseam.
Wake up.
Walk the dog at the beach.
Go to yoga, or play tennis, or ride bikes, or some other wholesome activity, all of which we did slowly and delicately, under the haze of Giulia’s medication.
Eat lunch.
Walk the dog again.
Do an art project, or read, or watch a little TV.
Dinner.
Medicine.
Bedtime.
IOP mornings helped—I loved my surf sessions—but there was almost no variety. We rarely saw other people. We became just like Goose, shuffling around in circles, trying to chase the sun spots in this new existence. But there wasn’t a lot of sun. We mostly trudged through fog.
The medications knocked Giulia out early, by around seven p.m. She fell asleep almost as soon as she lay down, whether on the couch or in bed. Her sleep was motionless and dreamless, the collapse of a hurting mind that wanted to be rid of itself. When she finally woke twelve or thirteen or fourteen or even sometimes fifteen hours later, she had barely moved.
After Giulia fell asleep, my nights were filled with a thick loneliness. I spent all day with Giulia, our lives stripped down to the barest essence of survival, but at night the rest of the world crashed back in on me. I paid bills, I e-mailed updates to our parents, I sat uneasily with my guilt over leaving work, my worries about where her illness was going to take us, my frustrations with no companionship, no sex, no job, no life. I couldn’t go anywhere or have anyone over.
I turned to the Internet, the baseball playoffs, television. Netflix stream had just been invented, so I binge-watched The Office and Lost. I used the TV narratives as conversation pieces with Giulia the next day, so I had something to talk about. The TV and the Internet gave me something to occupy my attention, but best of all, they asked nothing of me in return. I could turn off the TV or log out of social media and walk away without anyone needing me.
About a month in, I couldn’t handle these nights anymore. I was wound too tight with anxiety and grief to sit on my couch all night. Giulia was so heavily medicated that she didn’t move in the night, let alone wake up, so I started to go running. I usually set out around ten p.m. I tiptoed down the street in my bare feet with a headlamp on, crossed the dunes, and hit full stride once I got down to the hard-packed sand of Ocean Beach. I ran from one end of the beach to the other and back again, music blaring at full level in my earbuds, my headlamp turned off to run in the darkness. I sometimes saw figures blur by in the dark, other night wanderers who came to the beach to empty themselves of feeling. Low tides were the best: the ocean retreated back into itself and left an expanse of glistening wet sand. It was like running on a mirror held up to the universe. I foolishly ran while looking up at a sky reflected below my feet and begged and pleaded to the world, Please get us through this mess.
Giulia’s psychosis faded after a few weeks at home. I credited the Zyprexa. But she wasn’t better yet. In the wake of the psychosis lay a crippling depression. As the depression settled in, Giulia often said to me, “You don’t know what I went through in the hospital. I can’t live after that. I can’t make it.”
Yes, she had tried to throw herself out of the moving car on the way to the hospital, but that felt like a side effect of her psychosis. I didn’t understand true suicidality until her psychosis was gone. Without the delusions, suicide was almost all Giulia thought about. It was one of the few topics she brought up unprompted in conversation.
We took one of our countless family walks on the beach on a morning when the fog was particularly beautiful. Ocean Beach is usually cursed with a high fog and a stiff wind. This morning, the wind was absent and the fog coated the ground like a dense, magical mist. We couldn’t see more than ten feet in front of us. Because it was such a lo
w fog, we could see the sun above us, through the fog, desperate to punch through. The light illuminated the fog in a way I had never seen, and it felt as though we were lost in a blinding, gold pixie dust.
The moment was too beautiful to wallow in the slowness and sadness of our lives, so I chased Goose and ran in circles around Giulia. I took the golden fog as an excuse to refuse to let our lives become nothing but heartache. I flirted with Giulia by kissing her cheek and pinching her butt as I raced around her.
“Mark, I need to ask you something,” she called as I whizzed by.
I circled back to her, my forehead wet with sweat and fog, my heart rate up, eyes alive and feeling good, dammit. “What is it, honey?”
“If someone kills themselves, do they still get a funeral?”
I stopped in my tracks.
“What was that?”
“If someone kills themselves, do they still get a funeral?” she repeated. “Because I know if you kill yourself you go to hell, but do they let you have a funeral? Because I’d want to have a funeral, for you guys. I’d hate for you to not at least get to go to a funeral for me.”
“Well, we don’t have to think about that stuff, Giulia,” I said, “because you’re not going to kill yourself. You’re going to make it.”
Giulia took a long pause, then said, “God is a fuckup.”
I slumped beside her, my feet now heavy. We turned around and walked back to our car in silence.
When we crested the sand dunes, Giulia said, “Mark, will you let me kill myself? You don’t know how unbearable this is. If you cared for me, you would let me kill myself.”
I ached at this definition of caring. Giulia was asking me to love her in the way she needed, which was to let her end her life.
“I do care for you, Giulia, but I don’t want to lose you.”