Mark Lukach "My Beloved Wife In A Psychiatric Hospital"

Video: Mark Lukach "My Beloved Wife In A Psychiatric Hospital"

Video: Mark Lukach "My Beloved Wife In A Psychiatric Hospital"
Video: How To Love Through Mental Illness | Mark Lukach 2024, March
Mark Lukach "My Beloved Wife In A Psychiatric Hospital"
Mark Lukach "My Beloved Wife In A Psychiatric Hospital"
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When I first saw my wife-to-be walking across the Georgetown campus, I shouted silly Buongiourno Principessa! She was Italian - gorgeous, and too good for me, but I was fearless and, moreover, I fell in love almost immediately. We lived in the same rookie dorm. Her smile was bello come il sole (beautiful as the sun) - I immediately learned a little Italian to impress her - and after a month we became a couple. She came to my room to wake me up when I woke up classes; I tied roses to her door. She had an excellent GPA; I had a mohawk and a Sector 9 longboard. We were in awe of how amazing it is - you love and they love you.

Two years after graduation, we got married, we were only 24 years old, many of our friends were still looking for their first job. We packed our belongings into a shared van and told the driver, “Go to San Francisco. We will give you the address when we know it ourselves."

Julia had a definite life plan: to become a marketing director for a fashion company and have three children under 35. My goals were less rigid: I wanted to body-surf the waves of Ocean Beach in San Francisco and enjoy my job as a high school history teacher and football and swim coach. Julia was collected and practical. My head was often in the clouds, if not submerged in water. After a few years of marriage, we started talking about the birth of the first of our three children. By our third wedding anniversary, our captivating youth has transformed into a captivating maturity. Julia has achieved her dream job.

This is where the wonderful tale of love ends.

After a few weeks in her new position, Julia's anxiety increased to a level that I have never met. She was a little nervous before, demanding from herself impeccable adherence to certain standards. Now, at the age of 27, she froze, numb - horrified at the possibility of disappointing people and making the wrong impression. She spent all day at work trying to write a single e-mail, sending the text to me for editing, and never sending it to the addressee. There was no room in her head for anything other than anxiety. At supper she sat staring at the food; at night she lay staring at the ceiling. I stayed up as long as I could trying to calm her down - I'm sure you do a great job, you always do that - but by midnight I was bound to doze off, exhausted by guilt. I knew that while I was sleeping, terrible thoughts kept my beloved wife from falling asleep, and she anxiously awaited the morning.

She went to a therapist, and then to a psychiatrist, who prescribed antidepressants and sleeping pills, which we naively considered a reinsurance. She's not that sick, is she? Julia decided not to take her medication. Instead, she called her work and said she was sick. Then one day when we were brushing our teeth, Julia asked me to hide the medicines, saying, "I don't like that they are in our house and I know where they are." I replied: "Of course, of course!", But the next morning I overslept and hurried to school, forgetting about her request. At the time, I considered it a minor oversight, like losing my wallet. But Julia spent the entire day at home, staring at two orange jars of medicine, mustering the courage to take them all at once. She didn't call me at work to tell me about it - she knew that I would immediately rush home. Instead, she called her mother in Italy, who kept Julia on the phone for four hours until I got home.

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When I woke up the next morning, I found Julia sitting on the bed talking calmly but incoherently about her nightly conversations with God, and I started to panic. Julia's parents had already flown to California from Tuscany. I called the psychiatrist, who again advised me to take medication. By that time, I already thought it was a great idea - this crisis was definitely beyond my comprehension. And, nevertheless, Julia refused to take medications. When I woke up the next morning, I found Julia wandering around the bedroom recounting her animated conversation with the devil. I've had enough. Julia's parents and I, who had arrived in town by that time, took her to the emergency room at the Kaiser Permanente Clinic. There was no psychiatric ward at this clinic, and they referred us to St. Francis Memorial Hospital in downtown San Francisco, where Julia was admitted. We all thought her psychiatric hospitalization would be short-lived. Julia will take some medicine; her brain would be cleansed in a matter of days, perhaps hours. She will return to her original state - with the goal of becoming a marketing director and a mother of three under 35.

This fantasy was shattered in the emergency room. Julia will not return home today or tomorrow. Looking through the glass window at Julia's new, terrifying home, I asked myself, "What the hell have I done?" This place is full of potentially dangerous people who can rip my beautiful wife to shreds. Besides, she's not crazy. She just hasn't slept for a long time. She's stressed. Perhaps she is worried about her job. Nervous about the prospect of becoming a mom. No mental illness.

However, my wife was ill. Acute psychosis, as defined by doctors. She was almost constantly in a hallucinatory state, captured by unrelenting paranoia. For the next three weeks, I visited Julia every evening during visiting hours, from 7:00 to 8:30. She burst into unintelligible chatter about heaven, hell, angels and the devil. Very little of what she said made sense. Once I went to Julia's room, and she saw me and huddled on the bed, repeating monotonously: Voglio morire, voglio morire, voglio morire - I want to die, I want to die, I want to die. At first she whispered through her teeth, then began to scream aggressively: VOGLIO MORIRE, VOGLIO MORIRE, VOGLIO MORIRE !!! I'm not sure which of this scared me more: how my wife wishes her death by screaming or whispering.

I hated the hospital - it sucked all the energy and optimism out of me. I can't imagine how Julia lived there. Yes, she had psychosis, her own thoughts tormented her, she needed care and help. And in order for her to receive this care, she was locked up against her own will, she was tied up by orderlies who put injections with medicine in her thigh.

“Mark, I think it’s worse for Julia than if she died,” my mother-in-law once told me, leaving the hospital of St. Francis. “The person we are visiting is not my daughter, and I don’t know if she will return.

I silently agreed. Every evening I was picking at the wound that I had tried to heal all the previous day.

Julia was in the hospital for 23 days, longer than the other patients in her ward. Julia's hallucinations sometimes frightened her; sometimes they calmed her down. Finally, after three weeks on heavy antipsychotics, the psychosis began to subside. The doctors still had no definite diagnosis. Schizophrenia? Probably not. Bipolar disorder? Does not look like. At our pre-discharge meeting, the doctor explained how important it was for Julia to continue with her treatment at home, and how difficult it could be because I couldn't force the injections like the hospital attendants did. Meanwhile, Julia continued to plunge into hallucinations and come back from them. During the meeting, she leaned over to me and whispered that she was the devil and that she should be locked up forever.

There is no textbook on how to cope with your young wife's psychiatric crisis. The person you love is no longer there, replaced by a stranger - terrifying and strange. Every day I could taste the bittersweet taste of saliva in my mouth, foreshadowing vomiting. To stay sane, I plunged headlong into the work of an excellent husband, mentally ill. I wrote down everything that made the situation better and worse. I made Julia take her medication as prescribed. Sometimes I would have to make sure she swallowed them, then check my mouth to make sure she wasn't tucking the pills under her tongue. All this led to the fact that we ceased to be on an equal footing, which upset me. As with the students at school, I asserted my authority over Julia. I told myself that I knew better than her what was good for her. I thought she should obey me and act like an obedient patient. Of course, this did not happen. Mentally ill people rarely behave properly. And when I said, "Take your pills" or "Go to sleep," she angrily answered "Shut up" or "Go away." The conflict between us reached the doctor's office. I considered myself Julia's lawyer, but I did not take her side when dealing with her doctors. I wanted her to follow medical guidelines that she didn't want to follow. I would do anything to help the doctors adhere to the treatment plan. My task was to help her.

After discharge, Julia's psychosis continued for another month. This was followed by a period of depression, suicidal thoughts, lethargy and blackouts. I went on vacation for a few months to be with Julia all day and take care of her, even helping her out of bed. All this time, doctors continued to adjust the treatment, trying to find the best combination. I took it upon myself to monitor Julia so that she takes her medications as prescribed.

Then, finally, suddenly, Julia's consciousness returned. The treating psychiatrists said that perhaps this prolonged episode of her ill health was the first and the last: deep depression with psychotic symptoms - an embellished name for a nervous disorder. Next, we had to take care of maintaining balance and stability in Julia's usual life. That meant taking all your medications, going to bed early, eating well, minimizing alcohol and caffeine, and exercising regularly. But as soon as Julia recovered, we eagerly breathed in the smell of ordinary life - walks along the Ocean Beach, real intimacy, even the luxury of silly pointless quarrels. Soon enough, she started going to interviews and got an even better position than the one she left due to illness. We never considered the possibility of a relapse. Why would you? Julia was ill; now she felt better. Our preparations for the next disease would mean an admission of defeat.

However, the strange thing was that when we tried to return to our life before the crisis, we found that our relationship turned 180 degrees. Julia was no longer an alpha person who worked through all the details. Instead, she focused on living for the moment and being grateful that she was healthy. I became a pedant, fixated on all the little things, which was unusual for me. It was strange, but at least our roles continued to complement each other and our marriage worked like a clock. To such an extent that a year after Julia recovered, we consulted with a psychiatrist, therapist and obstetrician-gynecologist, and Julia became pregnant. And two years have not passed since the moment I took Julia to the mental hospital, as she gave birth to our son. All five months that Julia was on maternity leave, she was delighted, absorbing all the splendor that belonged to Jonas - his scent, his expressive eyes, his lips, which he wrinkled in his sleep. I ordered diapers and put in place a schedule. We agreed that Julia would return to work and I would stay at home to do the housework, writing while Jonas slept. It was great - 10 whole days.

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After only four sleepless nights, Julia was again possessed by psychosis. She would skip lunch to express milk while chatting with me and Jonas at the same time. Then she chatted uncontrollably about her big plans for everything in the world. I took bottles and diapers in my bag, strapped Jonas into the baby seat, lured Julia out of the house, and drove to the emergency room. Arriving there, I tried to convince the psychiatrist on duty that I could handle it. I knew how to take care of my wife at home, we were already going through this, we only needed some kind of antipsychotic that had helped Julia well before. The doctor refused. She sent us to El Camino Hospital in Mountain View, an hour south of our home. There, the doctor told Julia to feed Jonas one last time before she took the medication that would poison her milk. As Jonas ate, Julia chatted about how heaven once was on earth and that God has a divine plan for everyone. (Some might think this sounds soothing, but trust me, it’s not at all.) Then the doctor took Jonas away from Julia, gave him to me, and took my wife away.

A week later, while Julia was in the psychiatric ward, I went to visit our friends in Pont Reyes, Cas and Leslie. Cas knew that I was already worried about having to take on the role of Julia's orderly, the psychiatrist's assistant, again. As we strolled along the swampy coast off the scenic California coast, Cas took a small brochure out of his back pocket and handed it to me. “There may be another way,” he said.

The book by R. D. Laing's Shattered Self: An Existential Exploration of Mental Health and Madness was my introduction to anti-psychiatry. The book was published in 1960, when Laing was only 33 years old, and medication was becoming the predominant treatment for mental illness. Laing clearly disliked this bias. He didn't like the suggestion that psychosis was a disease to be treated. In an elucidation that somewhat predicted the current trend of neurodiversity, Laing wrote: "The confused mind of the schizophrenic can let in light that does not penetrate the healthy minds of many healthy people whose minds are closed." For him, the strange behavior of people with psychosis, de facto, was not bad. Perhaps they made reasonable attempts to express their thoughts and feelings, which was not allowed in a decent society? Maybe family members, as well as doctors, made some people crazy to shame them? From Laing's point of view, the interpretation of mental illness is demeaning, inhuman - it is the seizure of power by imaginary "normal" people. Reading The Shattered Self was insanely painful. The most cruel phrase for me was the following: "I have not seen a schizophrenic who could say that he is loved."

Laing's book helped develop the Mad Pride movement, which copied its structure from Gay Pride, which demands that the word "crazy" be positive instead of disparaging. Mad Pride evolved out of a movement of the mentally ill, whose goal was to bring mental health issues out of the hands of well-intentioned doctors and caregivers to the patients themselves. I love all these movements to fight for their rights - I think everyone deserves the right to accept and self-determination - but Laing's words hurt me. I made love for Julia the center of my life. I put her recovery above everything else for almost a year. I was not ashamed of Julia. Quite the opposite: I was proud of her and how she fights the disease. If there was a green or orange ribbon for those supporting the mentally ill, I would wear it.

However, Laing destroyed my concept of myself, which was dear to me: that I am a good husband. Laing died in 1989, more than 20 years before I stumbled upon his book, so who knows what he would really think now. His ideas about mental health and its maintenance may have changed over time. But in a very sensitive state, I heard Laing say: the patients are good. The doctors are bad. Family members spoil everything by listening to psychiatrists and becoming clumsy accomplices in psychiatric crime. And I was such an accomplice, I forced Julia to take medications against her will, which alienated her from me, made her unhappy, stupid and suppressed her thoughts. From my point of view, these same drugs allowed Julia to stay alive, making everything else secondary. I never doubted the correctness of my motives. From the beginning, I took on the role of Julia's humble guardian - not a saint, but certainly a good guy. Laing made me feel like a torturer.

Julia's second hospitalization was even more difficult than the first. On quiet nights at home, having put Jonas to bed, I shrank from the horror of reality: IT will not go away. In a mental institution, Julia loved to collect leaves and scatter them around her room. During my visits, she gave free rein to the stream of her paranoid questions and accusations, then wilted, picked up the leaves and inhaled their scent, as if he could hold her thoughts. My thoughts also scattered. Laing's ideas raised many questions. Should Julia be in the hospital at all? Was it really a disease? Did the drugs make things better or worse? All of these questions added to my sadness and fear, as well as self-doubt. If Julia had something like cancer or diabetes, she would have directed her own treatment; but since she had a mental illness, she did not. Nobody even really trusted Julia's opinion. Psychiatry is not one of those areas in which diagnoses are based on hard data with clear treatment plans. Some particularly prominent psychiatrists themselves have recently harshly criticized their discipline for an inadequate research base. For example, in 2013, Thomas Insel, director of the National Institute of Mental Health, criticized the so-called bible of all psychiatrists - "DSM-IV" - for lack of scientific firmness, in particular, because it defines disorders not by objective criteria, but by symptoms. “In other areas of medicine, this would be considered old-fashioned and insufficient, akin to a diagnostic system for the nature of chest pain or the quality of fever,” he said. Allen Francis, who oversaw the drafting of the 1994 DSM and later wrote Saving the Normal, expressed his opinion even more bluntly: “There is no definition of mental disorder. That's nonsense".

Yet the doctors, Julia's parents, and I all made decisions for her. She continued to hate the drugs we forced her to take, but she came out of the second psychosis in much the same way as the first: with medication. She returned home 33 days later, continuing to go into psychosis from time to time, but most of the time in control. She no longer spoke of the devil or the universe, but again she was not with us, deep in depression and chemical fog.

During her recovery, Julia attended group therapy classes, and sometimes her friends from this group came to visit us. They sat on the couch and lamented how much they hated drugs, doctors, and diagnoses. I was uncomfortable, and not only because they gave me the nickname Medical Nazi. Their conversations were fueled by information from the anti-psychiatric movement, a movement based on patient support from patients. That is, the mentally ill are the same mentally ill - regardless of whether the influence of other patients is positive or not. This terrified me. I was afraid that the issue of Julia's recovery had been passed from the hands of sane, sympathetic people - that is, doctors, family and mine - to people like her, who themselves may be psychotic or suicidal.

I was not sure how to deal with this, I was exhausted by our regular fights about adherence and visits to the doctor, so I called Sasha Altman DuBruhl, one of the founders of Project Ikarus, an alternative healthcare organization that “seeks to overcome the limitations intended for designation, ordering and sorting of types of human behavior ". Project Ikarus believes that the condition that most people consider mental illness is actually "the space between genius and insanity." I didn't want to call at all. I did not see genius in Julia's behavior and did not want to be judged, and I felt guilty. But I needed a fresh perspective on this struggle. DuBrule immediately reassured me. He began by saying that each person's experience with mental problems is unique. It may be obvious, but psychiatry is in some way built on generalizations (and this is criticized by Insel, Francis and others: psychiatry, as described by the DSM system, is a reference for generalizing labels based on symptoms). DuBruelle did not like the idea of distributing each person's individual experience into one of several possible boxes.

“I have been diagnosed with bipolar disorder,” he told me. “While these terms can be useful to explain some things, they lack a lot of nuance.

He said he had discovered the label "a kind of alienation." This resonated with me. For Julia, too, none of the diagnoses was entirely correct. During her first psychotic outbreak, psychiatrists ruled out bipolar disorder; during the second outbreak, three years later, they were convinced that it was bipolarity. In addition, DuBruhl said that regardless of the diagnosis, psychiatry "uses terrible language for its definitions."

As for medications, DuBruhl believed that the answer to the question of whether to take medications or not should be much more detailed than just “yes” and “no”. The best answer might be “maybe,” “sometimes,” and “only certain drugs”. For example, DuBruhl shared that he takes lithium every night because after four hospitalizations and ten years with a bipolar label, he is confident that the drug plays a positive role in his therapy. This is not a 100% solution, but it is part of the solution.

All of this was very comforting, but when he told me about the concept of Mad maps, I really perked up and began to closely follow his thoughts. He explained to me that just like the will, the "madness map" allows patients with psychiatric diagnoses to map out how they see their treatment in future psychotic crises. The logic is this: if a person can determine his health, being healthy, and distinguish a healthy state from a crisis, then such a person can also determine the ways of caring for himself. The maps encourage patients and their families to plan ahead - considering an exacerbation possible or rather likely - to avoid future mistakes, or at least minimize them.

When Jonas was 16 months old, Julia and I put an antipsychotic medication in our home medicine cabinet, just in case. This may sound reasonable, but it was actually stupid. We hadn’t heard of “madness cards” yet and, accordingly, hadn’t discussed what the situation should be in which Julia would need to take medicine, so the medicine was useless. Should she take medicine if she slept a little? Or does she need to wait until the attack occurs? If she has to wait for a seizure, she is more likely to become paranoid, that is, she will not take the medicine as she wishes. It is almost impossible to convince her to take the medicine at this moment.

Let me show you this scenario: Just a few months ago, Julia was painting furniture at midnight. She usually goes to bed early, an hour or two after she gets Jonas to bed. Sleep is important and she knows it. I invited her to go to bed.

“But I'm having fun,” Julia said.

“Okay,” I said. - But it's already midnight. Go to sleep.

“No,” she said.

- Do you understand how it looks? - I said.

- What are you talking about?

- I'm not saying that you are in mania, but on the surface it looks like an obsession. Paint all night, feel full of energy …

- How dare you tell me what to do? Stop running my life! You are not the most important! - Julia exploded.

The quarrel continued for several days. Anything that reminded us of our actions during her illness could end badly. So we played nice with Jonas, but for the next 72 hours, any tiny wrong move had huge consequences.

Then, a week after the start of a painful quarrel, Julia had a rough day at work. When we went to bed, she quietly said:

- I'm scared of how tired I feel.

I asked what she meant. She refused to say:

“I don’t want to talk about it because I need to sleep, but I’m scared.

And that, in turn, scared the hell out of me. She was worried about her state of mind. I tried to suppress my anger and fear that she didn't care about her health. But I didn’t sleep, I blamed it on her, and the quarrel continued again for several days.

Julia has been healthy for over a year now. She is doing well at work, I am back to teaching, we adore our son Jonas. Life is good. Mostly.

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Julia takes the medicine in a dosage that is sufficient for it to work, but without the unpleasant side effects. But even in our happiest moments, as husband and wife, father and mother, we feel in ourselves persistent traces of the roles of caregiver and patient. Psychiatric crises happen sporadically, but they deeply hurt our relationship and take years to heal. When Julia is sick, I act for her so that it is in her interests, and as I understand it, because I love her, and at this time she cannot make decisions for herself. On any of these days, during crises, if you ask her: "Hey, what are you going to do this afternoon?", She might answer: "Throw yourself off the Golden Gate Bridge." For me, it's the job of keeping our family together: paying the bills, not losing my job, taking care of Julia and our son.

Now, if I ask her to go to bed, she complains that I am telling her what to do in control of her life. And this is true because I really tell her what to do and control her life for months. In the meantime, I notice that she is not taking care of herself well enough. This dynamic is not unique - it exists in many families in psychiatric crisis. The former guardian continues to worry. The former (and possibly future patient) feels trapped in a patronizing model.

This is where the "Madness Map" gave us a glimpse of hope. Julia and I finally made it, and now in following it, I have to admit that Laing was right about something: the issue of treating psychosis is a matter of strength. Who decides what behavior is acceptable? Who chooses when and how to enforce the rules? We started trying to create a map for Julia by discussing the pills in the doctor's office. Under what circumstances will Julia take them and how much? My approach was tough: one sleepless night is the maximum dosage of pills. Julia requested more time to switch to medication and preferred to start at a lower dosage. Having outlined our positions, we embarked on a bitter dispute, punching gaps in each other's logic. In the end, we had to resort to the help of Julia's psychiatrist to resolve this issue. We now have a plan - one bottle of pills. This is not yet a victory, but a giant step in the right direction, in a world where such steps are generally rare.

We still have a lot to solve, and most of these issues are terribly difficult. Julia still wants to have three children before she turns 35. I am interested in avoiding a third hospitalization. And when we try to schedule discussions on these topics, we know that we are, in fact, creating space for the fight ahead of time. However, I believe in these conversations because when we sit together and discuss the dosage of medication, or the timing of pregnancy, or the risks of taking lithium during pregnancy, we are essentially saying, "I love you." I can say, “I think you are in a hurry,” but the subtext is “I want you to be healthy and happy, I want to spend my life with you. I want to hear what you disagree with me about the most personal things, so that we can be together. " And Julia can say: "Leave me more space", but in her heart it sounds like "I appreciate what you did for me, and I support you in everything you do, let's fix it."

Julia and I fell in love with each other effortlessly, in our carefree youth. Now we love each other desperately, through all the psychoses. We promised this to each other at the wedding: to love each other and be together in grief and joy. Looking back, I think that we still had to promise to love each other when life is back to normal. It is the normal days, transformed by the crisis, that test our marriage the most. I understand that no "madness cards" will prevent Julia from getting to the hospital, and will not prevent our quarrels over her treatment. However, the faith it takes to plan our life together gives us strong support. And I'm still willing to do almost anything to make Julia smile.

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Translated by Galina Leonchuk, 2016

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