by Mark Lukach
three
September 2009
“Get out of here!” Giulia shrieked as she pointed at us. “It’s not safe! You need to leave!”
Suoc and I stood in the doorway to Giulia’s bare room. It was our first visit. We had dropped Giulia off the day before and spent every minute of the past twenty-four hours waiting until we could come back. Now we were here, to see the inside of the psych ward, with our beloved Giulia in it, and she was screaming at us to leave.
Giulia sat upright on a twin bed that was stuffed back in the far corner of the room, her blanched blankets a heap around her. The tile floor and the walls were the same color, a white so insignificant that it was practically a noncolor. She still wore the hospital gown they had changed her into at the ER, the blue faded after years of use. Next to her bed was a bedside wooden table, with two chairs nearby, and that was it. The room was otherwise empty, useless, colorless space.
Giulia’s door was just a few feet away from the nurses’ station. I learned later, when they moved Giulia to another room, that this room, always within eyesight and earshot of the nurses, was for the most vulnerable patient.
I was distraught with impatience to see some type of improvement after a night in the psych ward. I was also anxious to assess the conditions of the hospital and, most important, to see how Giulia had handled her first twenty-four hours alone. I had been calling the hospital every hour on the hour, but the only report I had gotten was that she had been in her bed all day and refused to engage with anyone.
Instead of the improvement I was hoping for, Giulia was worse—more agitated, more intensely delusional. “Stay away from me!” she continued to scream.
I still didn’t know how to engage with her outbursts, so I resorted to calming, gentle assurances, as if trying to soothe a scared child.
“Hi, Giulia, it’s good to see you,” I gently replied over her loud warnings.
“Get out! The Devil is here and he wants you. You need to leave now!” She was hysterical with fear. I looked over my shoulder back at the nurses’ station, and the two nurses working there were watching us intensely. Visitors were not allowed in patients’ rooms, but since Giulia had just been admitted yesterday and hadn’t left her room, we had been granted an exception.
“Honey, it’s okay, there’s no one to get us,” I said slowly as I fidgeted in the doorway and forced a smile to hide my racing anxiety. “We’re just here to see you.” I paused and tried to shift the conversation to the condition of the hospital. “How are things going? Are you doing okay in here?” I instinctively took a step forward, to be closer to her, and Giulia exploded.
“Don’t you dare come near me!” she screamed. She was uncontrollable with a fear that something was going to happen to us.
I retreated back to stand shoulder to shoulder with Suoc in the narrow doorway. We stood in helpless, defeated silence. I could hear Suoc’s heavy breathing, the first I had really noticed of her since we’d stepped onto the elevator up to the third floor for our visit. I was so focused on seeing Giulia, I had almost forgotten that Suoc was there. We were practically holding each other upright in the doorway, both of us consumed with love and fear for Giulia.
After a minute, I mustered up the courage to try something.
“I’ve got an idea. What if we take those two seats and put them over here, by the door? That way we can talk to you but you don’t have to worry about being so close.”
Giulia didn’t respond, which I interpreted as a tacit agreement. She nervously watched as I scooted into the room and slid the chairs away from the bed. The farther back I pulled them, the more her body relaxed.
“Okay, this works. We’re here, and we’re fine. You don’t have to worry.”
Giulia leaned back against the headboard. We sat down. Suoc fidgeted at a loose string that dangled at the cuff of her sweater.
“So, Giulia, tell me about your day,” I said. I was dying to know what she’d done all day. “Are they treating you well here? Do you like the nurses?”
Giulia continued to have no interest in the day-to-day.
“I did bad things and the Devil is here and I need to go down in order to come back up. I don’t know why he picked me but he did and that’s all there is to it.”
She took a long pause and looked at us pleadingly. “I don’t understand why you guys are involved in this, too. Everyone wants to gather me in a big circle, and shame me for what I’ve done. You all know about my faults and now I have to suffer for them and you both are part of it.”
“Dai, Giulia, non è vero,” Suoc responded in Italian. Come on, Giulia, it’s not true. “Mark, do you know about this?”
“I don’t know about this, but what I do know is that Giulia is a very good person who has friends and family who love her and care for her a lot.”
But Giulia kept on insisting. The conversation continued this way, volleying back and forth between two irreconcilable realities. On one side, Suoc and I were trying to stay calm and be in our reality, so we could confirm our love and faith in healing. On the other, Giulia spastically prepared for some apocalyptic showdown with the Devil.
Giulia grew intolerably frustrated by our inability to understand her. She rolled onto her back, pulled her knees toward her chest, and chanted, “Voglio morire, voglio morire, voglio morire.” I want to die, I want to die, I want to die. At first she hissed through her teeth, then she started shouting, “VOGLIO MORIRE, VOGLIO MORIRE!” in an aggressive roar. I’m not sure which scared me more: listening to my wife whisper her death wish or scream it.
A nurse barged in and recommended we take a break, so we stepped out into the hallway. I had called them all day and they had reported the same thing: Giulia hadn’t left her bed and wouldn’t talk to anyone. She spent the whole day on her side, staring at the wall. Which was certainly worrisome. But now she was in a fury, and the nurses weren’t impressed. “Perhaps you are making her more agitated by being here,” the nurse said. I somehow convinced her to let us stay.
From the doorway, I asked Giulia if I could come close to her for ten seconds. Just ten seconds. We could test to see if the Devil really was contagious. She had barely conceded before I snuck in and stood by her side. After a few seconds, I left.
Giulia watched in shock.
“You’re not dead,” she declared in disbelief. “And I’m not dead either. Why?”
“Because we love each other,” I said.
“We do, don’t we.”
“Yes, we do. And that is stronger than this.”
She sat in uncertainty for a while and then looked back with an entirely different expression—fragility, helplessness, desperation.
“I’m scared, Mark.”
“I’m scared, too.”
I pulled my chair up close to her bed and held her hand. We didn’t talk much, but at least we were together, and she was calm. We somehow managed to stay thirty minutes past the close of visiting hours, and Giulia took us to the cafeteria, where food had been laid out. I had a piece of cake. It was delicious, and I considered going back for seconds but decided that wasn’t a great idea.
I kissed Giulia on her forehead before I left, feeling victorious. I had convinced her out of her reality and back into mine, if even for a moment.
The first few days of Giulia’s hospitalization, I spent almost every waking hour on the phone. I spoke with the nurses at the hospital, asking for updates; with the social worker who had been assigned to Giulia’s case; with her doctor’s voice mail (he never picked up, but that never stopped me from calling); with friends and referrals about what might be going on, in order to have second, third, fourth, and fifth opinions; and finally with family, reporting whatever I learned.
With every call I made, I grew increasingly agitated at the inflexibility of the mental health system. I understood that the mentally unstable needed protection, but the system didn’t understand that my wife didn’t need protection from me. I was there to help. Of course I was there to help. But
so many rules and loopholes stood in the way.
For starters, I was technically not allowed to speak to any of the nurses or Giulia’s doctor. Romeo and I had been parking the car when Giulia was processed by the psych unit, her mom by her side. When asked whom the doctors would be permitted to speak with, Giulia looked at her mom and said, “Her.”
Suoc was unenthusiastic with the prospect of being the main point of contact. Her first language was Italian, and she was hesitant in English. Her fundamental suspicion of psychiatry didn’t help. The American nurses, speaking in technical language about psychosis and delusions, were intimidating. But, no matter. Since Giulia hadn’t signed off for me to speak to the hospital staff, legally, no one could give me information about her status or care. Still, I badgered them with phone calls hourly. A few nurses caved to my entreaties and answered my questions, but they were uncomfortable with it. The doctor insisted that I get Giulia to sign a note giving me permission to receive information on her behalf. She couldn’t even acknowledge our reality, how was she supposed to officially grant me permission to speak to her doctor?
Another frustration involved the prescribed medication. The psychiatrist had seen Giulia within a few hours of her admission and had prescribed sleeping pills and a medication called Geodon, a fairly new antipsychotic that was known to help control the hysteria, paranoia, and delusions associated with a psychotic break. But on a 5150, it was up to Giulia to decide whether to take the prescribed meds or not. She refused the medication.
Logically, this made sense. The law protected patients from taking any unwanted medication while in the seventy-two hours of a 5150. This not only respected the rights of patients—an important development in a long history of abuse against the mentally ill—it afforded a “wait and see” approach that worked for the common occurrence of people who were in there because of drug overdoses.
In Giulia’s case, however, I felt like this was lost time toward her recovery. Her psychosis was related not to drugs, but to anxiety and an absence of sleep—at least that’s the theory I had pieced together. She didn’t need a seventy-two-hour detox from drugs, she needed the opposite: the right drugs, and right away. The law that was meant to protect Giulia instead seemed to be letting her get worse.
After the three days expired, things would become more complicated legally. The doctor would have to either discharge Giulia or upgrade her 5150 to a 5250, a fourteen-day hold. In the fourteen-day hold, Giulia would be offered the same medication as before, but now if she refused, she could be forcibly injected, even if it was against her wishes.
I learned all of this from the Internet and from the piecemeal conversations I dragged out of the nurses, who were still not permitted to talk to me in those first days.
On the third day, the hospital was going to have a hearing where the doctor presented his case to a judge, to see if Giulia’s 5150 should be upgraded to a 5250. I asked if I could attend, and they said sure. I still wasn’t technically allowed to speak with any of the nurses, but I was allowed to go to the hearing. It was going to be on Thursday at ten a.m., almost exactly seventy-two hours after we had brought Giulia to the ER.
For some reason I thought I needed to dress up for the hearing, so I wore a shirt and tie and arrived at nine thirty. I buzzed the ringer to the nurses’ station.
“Can I help you with something?” she asked, poking her head through the door. “It’s not visiting hours until this evening.”
“Oh, I’m not here to visit,” I said. “I’m here for Giulia Lukach’s hearing. I was told it was going to be at ten a.m.”
“Oh right, yeah, actually that already happened. The judge was running early, so they finished about a half hour ago.”
“But they said ten. I’m thirty minutes early.” I was in disbelief.
“Well, it’s done already. You can come back tonight to visit.”
“Wait, wait, wait, I’m not leaving yet—” I grabbed on to the door handle that was on my side of the room so the nurse couldn’t close the door on me. “Can I at least find out what happened at the hearing? I mean, come on.”
“Okay, wait a minute.” She closed the door and went back to the nurses’ station.
I sat in the waiting room, fuming with frustration at the bureaucracy of the mental health system, picking at my stuffy shirt and tie. I had wanted to be there. Suoc and I both adamantly agreed that Giulia was looking worse than when we brought her there, so there was no way that she should be coming home. What if the doctor hadn’t agreed?
After a few minutes of shuffling through paperwork and speaking on the phone, the nurse at the station came back into the waiting room and sat in the chair next to me.
“The judge signed off on the doctor’s request,” she said. “Giulia has been upgraded to a 5250.”
“So she has to be here another fourteen days?” I asked.
“Yes, kind of. If she’s ready to come home sooner, then of course she’ll go home earlier.”
“What if she’s not better after fourteen days?”
“Then we do another hearing, with another possible extension.” A heavy silence followed, as I thought about how long two weeks were.
“So now this means that Giulia can’t refuse her medication, right?” I asked.
“Right,” the nurse said.
“So did she get her medication?” I pressed.
“I’m not supposed to get into the details, since Giulia still hasn’t signed off for you to speak directly with us.”
“Oh, come on, please,” I begged her. “Give me a break. Please. I came out here for a hearing, I got here early and I still missed it, the least I can get is a little update.”
The nurse looked at me uncomfortably. “She got her medicine this morning, right after the hearing,” she said quietly.
“Did she take the medication voluntarily?” I asked.
“I can’t tell you that,” she said timidly. “I shouldn’t have even told you that she had medicine.”
“Please, this is a nightmare, just please work with me here,” I said, exasperated. “Can you at least tell me if she took the pills by herself?”
“She did not take the pills by herself. But she got her medication.”
I knew what that meant. I closed my eyes and imagined three nurses walking into Giulia’s room, offering her pills, knowing she would refuse them, and then holding her down as they rolled up her hospital gown to expose her thigh for an injection. This was what a 5250 meant. And I had showed up early, in a shirt and tie, to argue that Giulia needed the 5250. But the image of it, the nurses pressing on her body, Giulia tensed and yelling and resisting whatever way she could, and them injecting her anyway, and knowing with certainty that it had happened, felt so tragic that it eclipsed the anger that had been boiling over.
“So that’s that,” I said quietly, breathing deeply to hold in the tears. “Can I go see her?”
“I’m sorry, but it’s not visiting hours.” The nurse gently patted my hand and then went back to work. I sagged into the already sagging chairs, completely overwhelmed by the layers of emotions that buried me into my seat: grief, fear, rage, more grief.
In the perverse dystopia of the psych ward, this was progress.
The world outside the hospital became its own maze. Giulia had worked at her new job for only six weeks, and she had called in sick for the past two weeks. She hadn’t accrued enough days to file for a medical leave. I spoke with her boss, who put me through to their outside HR rep. The rep presented us with two impossible options: either they fire Giulia from her dream job or I quit it on her behalf. Either way, Giulia’s job was over. It was just a matter of how it looked on her employment record.
Meanwhile, my work reluctantly introduced me to the Family and Medical Leave Act, which granted me upward of three months off as a caregiver. I took sick days for the first few days of Giulia’s hospitalization but returned to school for a day to see how it felt. A friend had convinced me that maybe the course work and students w
ould be a distraction.
It was a disaster. I zombied my way through my classes. I needed only fifteen minutes of my first period to know that I was going to be filing for an extended leave. During water polo practice, I hid my tears behind sunglasses, and I told my team that I was going to be taking a lot of time off.
On the car ride home from my last day at school for three months, I called back the HR rep and quit for Giulia. This would be better for her résumé in the long run, because otherwise the job would have to tell any other companies that they had fired her for work abandonment.
Within the course of five minutes, without talking to Giulia, I had quit her job and taken three months off of mine.
On the third evening of Giulia’s hospitalization, I was able to convince her to sign the paperwork that allowed me to speak with her nurses and doctor. Finally.
The next day I called each hour, as usual, but this time I got full reports. Today, Giulia was obsessed with a fear that she didn’t have a heartbeat. She left her room but always had her palm placed on her chest, looking for her heartbeat. She began engaging with other patients, to ask if she could feel for theirs. But she never found hers.
“Mark, I can feel your heartbeat!” It was a tremendous relief for her to feel my pulsing chest when I visited her that evening. “But I don’t have one.”
“Sure you do, Giulia.” I pressed my palm up to the chest of her increasingly bony frame. Pounds evaporated off her as she continued to not sleep or eat. Once I felt the beat, I tapped along with my hand on my thigh.
Uncertain, she put her hand on top of mine, to verify.
“I don’t feel it. No heartbeat.”
I continued to tap the rhythm. She reached back to my chest.
“There’s yours. I can feel yours. But I don’t have one. I told you I’m not in this world.”
“Mark, you need to fight for Giulia,” my mom warned me over the phone.
“I know, Mom, I am fighting,” I said wearily.