The long haul

It was the worst game of hide-and-seek Mark Lukach ever played. When his wife Giulia suffered her first psychotic break in 2009, Lukach was tasked with making sure she took her daily dose of antidepressants and sleeping pills – and then with hiding those orange, plastic bottles so his suicidal wife couldn't swallow all the pills later.

"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," Lukach writes in his new book, My Lovely Wife in the Psych Ward.

The affecting memoir follows Mark, a high school history teacher, and Giulia, a marketing manager, as they live through three hospitalizations in psychiatric wards over five years: the first for 23 days, the second for 33 days and the third for 13 days. Giulia is given a troubling number of diagnoses from baffled doctors: schizophrenia, postpartum psychosis and finally bipolar disorder, which is indeed what she suffers from. Giulia experiences both the highs and lows as negatives, and her mania manifests itself in delusions, sometimes involving God and the devil. "Startling intensity" is how Lukach describes his wife's descents from stress at work and lost sleep to being admitted to hospital, often within just days.

The memoir is a rare glimpse into the "perverse dystopia of the psych ward": nurses forever doing bureaucratic paperwork in cold rooms with barred windows, beat-up vinyl chairs, bland, green floors and "faded framed prints of impressionist paintings that no one looked at." Weeks confined in hospital are followed by intensive outpatient programs and powerful pharmaceutical cocktails that see Giulia erupt in acne, put on 60 pounds in two months and become sluggishly slow. Lukach likens her mind to an old TV stuck between channels on white noise. The medications merely turn down the volume.

Before the psych wards, the memoir depicts a painfully normal couple. The two meet in freshman year and marry six years later, the waves rocking them as Lukach proposes while they paddleboard and kayak far off land in the Atlantic Ocean. They move to San Francisco. He surfs and she zips to work on a scooter. There are potlucks and Frisbee games with friends in Golden Gate Park. They get a dog and blast Coldplay after dinner while washing dishes together. There are no cracks in the veneer, until there are.

His wife's mental illness makes Lukach "fierce with loyalty." The memoir – which was born out of a well-read 2011 New York Times Modern Love essay – reveals an imperfect marriage and an unshakable husband. The Globe spoke with Mark and Giulia Lukach from the San Francisco Bay Area, where the 34-year-old parents live with their five-year-old son, Jonas.

Three hospitalizations and the threat of more with a bipolar disorder diagnosis: how has this mental illness affected your marriage?

Mark Lukach: This has forced Giulia and I to be a lot more in tune with each other. Whether she's doing well or not, I'm more aware of how important it is to listen and not speak for her. And Giulia, she can't just assume that I'm chugging along at 100 per cent all the time. Writing about it also forced conversation; otherwise, we could have stuffed this away under the category of "let's never talk about that again" because it was so terrible. Giulia read the book multiple times and provided a lot of feedback. We had to revisit these things and though that was difficult, it's why we're in a good place in our relationship right now.

Giulia Lukach: Our marriage went through a lot of strain with me getting sick. When people get married and say, "in sickness and in health," you really don't know what you're signing up for. You don't think you're going to be the person that gets sick. We're stronger because of the experiences we've been through. I feel on solid ground with Mark in a way that I've never felt before.

Through the psychotic breaks, you take on roles in your marriage that you did not anticipate: Giulia as patient and Mark as "enforcer." How did you see your husband when he was checking your mouth for pills and dictating your movements throughout the day?

Giulia: I hated it with my whole being. That's how the nickname for Mark came about: "the Medicine Nazi." Looking back, I feel so bad that I referred to Mark that way when he was trying to help me. At the time I felt suffocated in my own existence. I was so angry at my life. I couldn't do anything or get away with anything. I needed to rebel in any way I could.

In the early days of the illness, Mark doles out platitudes: "stay positive" and "be in the moment." Why does this approach generally irk and alienate those who are mentally ill?

Mark: It's like telling someone who is angry, "Just relax." It's the worst thing you can say. It's a fundamental rejection of their feelings. When people that you love or know are feeling things that make you uncomfortable, the default reaction is to want to fix it. But it's important for these things to be heard and not talked over or swept away.

"I treated her depression like a fire," you write, "and I was the extinguisher."

Mark: I remember when she was out of the hospital we would Skype with her parents. I realized that I almost never let her actually talk. We'd sit there, they'd ask questions and I'd give Giulia a half-second to answer before I jumped in and answered for her. I could see my in-laws looking at each other. It was clear they wanted to hear from Giulia, not me. I was trying to put a positive spin on things so they wouldn't worry, instead of letting Giulia wrestle with it in front of her parents.

Some family members of sick people want to question doctors aggressively. Others defer to all authority figures. Giulia's mom cleans the house obsessively as a way to control something – anything. What did you learn about family responses to mental illness?

Giulia: My parents were just clueless. They had no idea what mental illness was. They just thought I was stressed at work. I still have a lot of family members who want to sweep it under the rug. They won't even acknowledge the book coming out. It's been hard but I'm trying to come to terms with the fact that not everyone is going to want to read the book, or acknowledge that we're related.

Your families panic and put Mark on speed dial for daily updates, which becomes taxing. Eventually, they opt for warm letters and photos in the mail instead, with no expectation of correspondence being returned. What advice do you have for families going through this?

Mark: Family members can make it clear that they are there to support you but they should be patient and not call every five minutes to say, "I'm here when you need me." Otherwise, just wait. I needed to turn to every single one of my family members at one point or another.

I wanted to turn to your experiences in the mental health-care system. You describe soulless psych wards; disinterested, patronizing nurses who ignore desperate family members to do paperwork instead; doped-up patients getting discharged too early. How do you feel about the system today?

Giulia: We needed to rely on the system for my survival. The psych wards were necessary. It was important that I couldn't hurt myself. Some nurses were extremely thoughtful and loving, helping me a lot. I was so grateful to them. Other times, I couldn't even believe I was getting treated this way as a patient. There are changes that need to be made in terms of protecting the patient and having more caregiver rights.

What needs drastic improvement?

Mark: Giulia was in three hospitals. One of them felt like a prison. Why does it have to feel like a prison cell? Why can't you allow people to have some freedom to be in nature and get some fresh air, when we know that is critical for health across the board?

I have other suggestions but they are costly, including to slow everything down. We want people to be healthy as soon as possible, but don't move them out of the system when you reach the bare minimum of stability. I wish our health-care system wasn't tapping its wristwatch. I wish it was just as patient as family members try to be. Take the long view: see how much support is needed over the long haul.

I would like mental illness to be treated as a family situation, not as an individual situation. I called my insurance provider when Giulia was hospitalized and told them that I needed to speak to a therapist, that I was having a tough time. They were willing to pay for 30 minutes a month of therapy, which was ridiculous. They told me that I didn't have a diagnosis to justify anything. I'm in a moment of profound crisis here and I need someone to talk to.

I still went and saw a therapist but we just paid out of pocket. How different it would have been if our insurance had provided sustained, frequent therapy for me, for Giulia, together. Those approaches are so much more inclusive of the family. They can make a really big difference.

This book draws attention to caregivers. Mark, you mention the moment on airplanes when flight attendants instruct passengers on oxygen masks: they ask parents to put their own masks on before their children's. In your case, you needed a bit of time for you – to surf, run or cycle – so you could better care for a sick wife and a young son.

Mark: It took me a long time to appreciate this. When I was a kid and heard those instructions on the airplane, my interpretation was that it was selfish. I thought, "You should help the person, then take care of yourself." It took supporting Giulia and seeing just how frazzled, exhausted and unhealthy I was feeling to realize that the oxygen-mask instructions make total sense. I can't be Giulia's best advocate or her best partner – or a father or a teacher – without a basic foundation of self-care.

Many marriages wouldn't survive this. What did you have that allowed you to survive?

Mark: I don't want to take too much personal credit for that. Our circumstances helped a lot. We come from families where they were able to drop everything and come support us. We had a pool of savings that we could dip into to pay for out-of-insurance costs. That was critical. I was the squeaky wheel that got all the attention in the hospitals because I was calling constantly. What about the people with no one to call on their behalf?

Also, the way Giulia was as a patient: she didn't like the pills but she was pretty darn compliant about taking them. If she had taken herself on and off her pills, that's almost like supporting an addict who hasn't hit rock bottom, where they don't yet accept what they have to do to take care of themselves. Giulia accepted it pretty early on. That made this easier. I don't have to worry when I go to sleep, did Giulia take her meds? She knows that's a key part of her staying healthy.

Finally, we were together through the formative years of adulthood. By the time Giulia got sick, she was so entrenched in my concept of past, present and future. Of course we were going to make it work and stay together. This is who we are are. There's no other way.

Giulia: Mark having the belief in us gave me the belief. He's downplaying his role but I don't know if I would be here without Mark present the last eight years to get me through three hospitalizations that shook up my entire existence.

Where are you at today?

Giulia: The triggers are the same: lack of sleep and stress at work. If I go one night without sleep I contact my psychiatrists and we set the game plan in motion. I can send them a note and literally, within 30 minutes, they'll reach out to me. My psychiatrist treats me like a human.

Then I'm on lithium. When there are stressful periods, I'll up the dose with my psychiatrist. I get lithium levels bloodwork done regularly. We take it very seriously because they've seen what happens. I end up in the hospital for a month at at time because of a couple days of no sleep.

We can all retweet mental-health hashtag campaigns, sure, but on the ground, with struggling friends or family members, many people find mental illness terrifying. This book is a very public and explicit account of bipolar disorder. What do you want to see change?

Giulia: There is stigma and a lack of understanding around mental illness. It took me so long to say the words, "I am bipolar" without feeling shame. It's a chemical imbalance in my brain, and that's okay. I hope we start to approach mental illness with more love and compassion whether you're the one who is sick, the caregiver or someone who doesn't really understand it.

Mark: My hope is that caregivers can read this and be less afraid. I hope people don't get scared if this happens to someone they love. I know that sounds ridiculous, but I mean scared to the point of running.

This interview has been edited and condensed.