The Scottish Mail on Sunday - You
REAL LIVES
Mark Lukach and his wife Giulia were living their dream when she suffered a sudden psychotic breakdown at the age of 27. Here he reflects on how, in that moment, their life together was irrevocably altered
‘I lost my wife and gained a lifelong patient’
The first time Giulia’s doctor said the word ‘schizophrenia’, I thought I must have misheard him. His assessment felt like a death sentence. Schizophrenia meant the psychosis would come back to haunt her for the rest of her life. She would never again be able to trust her own mind. She’d probably never be able to return to her high-powered job or our dream of having three kids. Even though this initial diagnosis was eventually changed to bipolar, in that instant I lost my wife and gained a lifelong patient. I put my head down and sobbed.
After the meeting, I went to San Francisco’s four-mile stretch of beach. A friend told me that I had to do as they tell you on an aeroplane: put on my oxygen mask and take care of myself before I could put on Giulia’s. The first three days of her hospitalisation I barely slept or ate and when I did it was to binge on junk food. I tried to tell myself that I had to be rested and clear to be her protector. 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 so I went home and got my wetsuit and board. I threw myself into the ocean, grappling with the implications of Giulia’s psychosis. I paddled out past the breaking waves into what felt like the open ocean. I faced its enormity and dived in. I couldn’t control what happened, or how long it would take her to get better, but I didn’t feel afraid. I felt relief.
I heard a soft pull of air and glanced to my right to see two dolphins swimming together. They swam right under me and then popped up again on my left side. I watched them swim away and thought of how vast and terrifying the ocean is and I resolved that if they could stay together, then so could we.
‘Honey, you’re coming home!’ I beamed as I saw her.
‘Mark,’ she whispered, as she leaned in close, looking wildly over her shoulder to see if anyone might be listening. ‘This is a big mistake. I am the devil and need to be locked away.’
My buoyant optimism skipped a beat. The doctor had been so convincing last night on the phone that Giulia was more stable, yet here she was, still psychotic and coming home with only me to take care of her. What was I getting into?
I brushed off her hesitations and said, ‘You’re doing great, Giulia.’ We packed up the last of her things. After only a few moments together she had returned to a sense of stability and talked about how she couldn’t wait to see our bulldog Goose and take him to the beach.
With the paperwork signed and a bag full of medication, a nurse led us to the glass doorway
that had divided my world from Giulia’s for the past 23 days. I held on to her hand as we walked out into the waiting room. She was weak from the weeks of inactivity and lack of sleep.
At first, she was cautious of everything, desperate to feel comfortable and settled at home but trapped in uncertainty. Like a bad fever, the psychosis 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 was the sign of its return with the rocking side to side, the puckering lips.
For me, the transition from being with her 90 minutes a day at the hospital 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 of the front door and was halfway down the road by the time I got to her.
The medication knocked her out early, by 7pm. Her sleep was motionless and dreamless, the collapse of a hurting mind that wanted to be rid of itself. When she finally woke, 12, 13 or sometimes 15 hours later, she had barely moved.
After she fell asleep my nights were filled with a thick loneliness. I spent all day with her, our lives stripped back to the barest essence of survival, but at night, the rest of the world crashed back. I paid bills, emailed our parents; I sat uneasily with guilt over leaving my work as a teacher, 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.
After about a month I couldn’t handle these nights any more so I started running. I tiptoed down the street barefoot, crossed the dunes and ran from one end of Ocean Beach to the other and back again, music blaring in my headphones. I begged and pleaded as I ran: please get us through this mess.
Giulia’s psychosis faded gradually. The first time I left her alone and awake was almost two months after her discharge from hospital. Two months of always keeping her in sight. But at some point we needed to let the space return into our relationship, to detach each other from our intense co-dependency.
That morning we had a lovely bike ride and Giulia was drained when we got home. She needed a nap, so when my friend Austin texted me about going surfing I figured I would give it a shot. She had been in good spirits and it had been a pretty good week. I’d have to leave her alone at some point, so today was the day.
When I returned home Giulia was sitting at the dining room table. ‘Don’t worry about my medicines tonight, I already took them,’ she said.
At first I was more confused than panicked. ‘What do you mean? You don’t even know where the pills are.’ I was still changing the hiding spot every few days so that she wouldn’t find them.
‘I found them,’ she said quietly. ‘I took more than I need, I put a big fistful of them in my mouth.’
I gasped. ‘Did you swallow any of them?’
‘No, I spat them out into the bin.’ Giulia appeared calm and matter- of-fact.
I raced into the kitchen and there they were, as promised, about 20 pills, dissolving at the bottom of the rubbish bin.
‘Don’t worry, Mark, I didn’t swallow any. Not the first time, or the second time.’
‘The second time?’ I felt I couldn’t breathe.
‘Don’t worry, I spat those out into the bathroom bin.’
Once again she was telling the truth. I went to the bedroom and started to pack a bag for her, not thinking, just acting.
Giulia appeared in the doorway, glaring and accusatory.
‘Please don’t, Mark, I can’t go back to the hospital. I didn’t take any pills. I spat them all out.’
‘But you tried to overdose Giulia. Twice! I wasn’t here to stop you. I left you and you found the pills and almost took them.’
I asked her over and over again to tell me the truth, to promise me that she hadn’t swallowed any of the pills and she never wavered in her response. I finally relented and put away her clothes. I nervously checked her heart rate every 20 minutes or so, both of us hating the other for having to do this.
Her medications took weeks to reach full effect. I felt like she was the subject of a science experiment. This drug didn’t work? Let’s increase it or decrease it, or replace it, or add something else to supplement it. Sorry you’re suffering through depression, psychosis and miserable side effects while waiting to see if it works.
But I refused to lose hope. Gradually, Giulia became more spontaneous in conversation. It had been two months since she had exhibited any sign of psychosis. Progress. Finally.
‘Mark, if I kill myself, will you promise me that you will find a new wife so that you can still be happy?’
I sighed but I didn’t have an answer for her. I was tired from worry, tired from spending so much time trying to convince Giulia that it was worth staying alive. I couldn’t handle another conversation about suicide. There had been so many over the eight months since she had been hospitalised.
Slowly, Giulia began to say more. ‘I can’t ever come back from what I went through in the hospital,’ she said nervously, a mantra I had heard and rebutted hundreds of times. But this time I didn’t say anything. I merely listened.
In the gaps between her sentences I realised how I rarely let her speak about how she was feeling. I treated her depression like a fire I had to extinguish. I had to act quickly every time the feelings surfaced, to stop them from growing into a destructive inferno. My instinct was to love her psychosis and depression away, to talk her out
Our lives were stripped back to the barest essence of survival
of her suicidal tendencies. Finally, exhaustion shut me up. ‘I hate myself and want to die.’ I said nothing; her despair hung heavily in the room. ‘I wish I had never been born.’ More silence. And then she left me stunned. ‘Thank you for listening to me,’ she said, grabbing my hands, pulling them up to her lips to kiss. ‘It’s so nice to talk to you.’
I realised then why people call suicide hotlines. The person on the other end of the line is there to listen without judgment or fear.
Then she surprised me further by leaning in to kiss my lips, our first kiss since she had left the hospital.
‘Thank you Mark, I feel a lot better. Let’s make some dinner.’
***** Giulia’s illness continued to improve and eventually they both returned to work, Mark to teaching and Giulia to her job in marketing. Then, two years later, she became pregnant. Giulia was in labour for 27 hours and with the final push our son arrived. I held on to Giulia and there was Jonas, a brown tuft of hair on his head. I leaned into them and wrapped my arms around my family. I fell in love with him instantly.
Nothing mattered to me as much as Jonas. My obsession with him made it easier not to worry about Giulia. Of course, she was awake in fits and starts throughout the night to feed him and I was at her side to help with nappy changes and to coax the two of them back to sleep. Giulia wasn’t showing any signs of anxiety, and I settled into the ordinary experience of being a parent. After such a life-changing time, ordinary seemed something to celebrate.
From the early-warning signs – insomnia and spiralling anxiety – it took Giulia six weeks to become psychotic the first time. The second time it took only four days. She had been back at work for three weeks after her five-month maternity leave. Her workplace was restructuring and Giulia panicked, assuming this meant last one in, first out. Since I was staying home to look after Jonas, she was our only source of income. The pressure to keep her job was immense and she became stressed under the burden.
After four nights of no sleep, Giulia was standing in our room, just after dawn.
‘I’ve figured it out, Mark. Heaven is a place on earth. That’s the test. That’s why they are restructuring. What a great thing to understand. I need to tell them this and they will let me stay.’
I knew then that she had to see a doctor immediately, and to my surprise Giulia agreed and helped me pack a bag of bottles and nappies. ‘OK, if that’s in God’s plan,’ she said. ‘In the hospital they are going to give you anti-psychotic drugs and that’s not good for Jonas so you won’t be able to breastfeed him. Do you want to feed him one more time?’
‘Yes, of course I want to. I love Jonas.’ She was so calm and unafraid I began to cry. ‘It’s OK, Mark, heaven is a place on earth.’
At the hospital, Giulia pulled Jonas to her breast and told him how she had to go away, that it was going to be OK and Daddy would take good care of him. After Giulia had finished nursing, the doctor took Jonas out of her arms, handed him to me and we drove away.
On her 32nd day in hospital they agreed to let Giulia come home. She jumped out of her chair and into my lap for a hug.
‘But we are releasing you against medical advice,’ the doctor continued. ‘We don’t believe you are ready for it. We simply recognise that hospital is no longer doing you good, but we worry about the strain this will put on your husband and son.’
It was a tremendous relief to know she was coming home. It had been exhausting driving an hour in each direction to visit her, only to be bombarded about why I wasn’t fighting to let her come home. On the drive home Giulia marvelled at how far away the hospital was and what a hassle it must have been to drive there every day.
The psychosis faded much the same way it had the first time, gradually, without fanfare, but it left little cause for celebration because it was immediately replaced with the deep chasm of depression. I let Giulia and Jonas have time alone by stepping into the kitchen and leaving them in the living room together. From there I couldn’t help but eavesdrop. It was excruciating. Jonas cooed at Giulia who sat silently in response.
I began to treat Giulia like a visiting guest, with no expectations about nappy changing, cooking, cleaning or shopping. I did my best to remove all the stressful and inane parts of parenting so that she could enjoy only the fun bits.
Five months after her discharge from hospital, the three of us walked along Ocean Beach. I noticed her stride had more purpose. She wasn’t shuffling apathetically. Her distant blank stare was lifting, too. She was more communicative with Jonas, playing peek-a-boo and digging shapes in the sand for him to crawl through and smash.
‘If I get sick again,’ Giulia said, ‘I’m not as scared of it.’ I said nothing. ‘I mean, I don’t want to become psychotic again but I know it’s OK. I know what to expect. I know, too, that you and Jonas will be OK while I need time to get it back under control…’ Her words got lost in the sound of tears and she trailed off.
‘I’ve got this “thing” for life Mark,’ she looked at me, gracious and dignified under the weight of her diagnosis. ‘Call it bipolar, call it a disease, but it is never going away. It will always be with me but at least I am not as scared of it any more.’
This is an edited extract from My Lovely Wife: A Memoir of Madness and Hope by Mark Lukach, to be published by Bluebird on 4 May, price £16.99. To order a copy for £12.74 until 14 May, visit you-bookshop.co.uk or call 0844 571 0640*
My instinct was to love her psychosis and depression away, to talk her out of suicide