Unravelling man

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Unravelling man

Bipolar disorder can rage through life like a hurricane. So why does the US healthcare system leave us to cope alone?

by Kristin Ohlson

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Illustration by Matt Murphy

Kristin Ohlson

is a freelance writer whose work has appeared in The New York Times, Salon, and New Scientist, among others. Her latest book is The Soil Will Save Us (2014). She lives in Portland, Oregon.

5,500 words

Edited by Brigid Hains

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I used to have a twangy guitar riff as the ringtone for Hank, a holdover from the days when we were lovers and he delighted me with music and a soft, southern-inflected singing voice. We didn’t talk often since I’d distanced myself from him after he returned to the kind of heavy drinking that had landed him in rehab shortly before I met him in 1993. More than just emotional distance: I had let loose my life in Cleveland and moved to Portland, Oregon, a return to the delicious proximity of family and the coast where I was born. But Hank and I were still friendly, so my only qualm about answering when my phone suddenly twanged on Southeast Belmont was that talking on your phone while driving is illegal here. So I put my phone on speaker and held it to my chest, out of sight.

He was down south visiting his family for his birthday. He had gone fishing that day with his old friend Reggie, and they’d had a wonderful time. ‘I’m having the most wonderful time of my life!’ he told me, his exuberance vibrating against my breastbone. ‘Reggie was wonderful and the fishing was wonderful and everything – everything was just wonderful!’

‘Really?’ I said. ‘That good?’

‘Wonderful! And you, I’ve been meaning to tell you. You’re wonderful, too. You really are.’

It was a surprising and suspicious pile-up of wonderfulness, so I pulled over to text his sister and ask how he was doing. She and I had become conjoined worriers, keeping each other posted on how he sounded over the phone, cataloguing the twisted ankles and scraped elbows and shattered headlights that suggested daily drinking, even when he claimed otherwise. ‘Let me call you later,’ she texted back.

It turned out that his visit had been about as destructive as one of the hurricanes that periodically rages through their city. He trashed his stepmother’s house with dirty clothes and dirty dishes and his dishevelled self, passed out in a chair. He smoked inside her house – an infraction almost as shocking as taking a piss in one of the neighbourhood churches. When the family gathered for his birthday, he cursed and argued at the table and was so unlike himself that everyone reeled away from him in dismay. And he announced that he might not leave for a few weeks, even though he was due back at work on Tuesday. He was having a good time and work be damned! This from a man who loved his job, showing up with Clydesdale diligence even during his worst drinking days, hiding his red eyes behind sunglasses.

That was the first signal that he was unravelling, seized by a mania that would shatter every mooring to the life he had built over 58 years. Within six months, he would lose his job and blow his retirement savings on fancy guitars, $400 shirts from Saks (no more 75-per-cent-off sales at Macy’s!), and catering for parties no one attended. He would alienate friends and agitate neighbours and, battered by the storm in his brain, sway on the precipice of homelessness.

It was the worst natural disaster I’d ever witnessed, an act of God, but with no Federal Emergency Management Agency and no clear path to help. Everyone who loves someone with mental illness seems to chart a solitary course, navigating the outback and dragging the afflicted along. We pray someone will help us, but discover laws and a health care system impeding meaningful treatment. The care we find is too sparse to make a difference, too slow to keep them from destroying their lives. Only love binds us to their crisis because pulling someone back from a psychiatric death spiral could mean dropping your plans – your own work, your own friends, your own life – to stand vigilant watch and advocate on their behalf.

On the day of my daughter’s wedding seven years ago, a Hank of a different hue rose before dawn to fish. He was there when my daughter arrived at the end of a dock near the house where we were staying. She wanted to write a toast to her new husband as she watched the sunlight tip over the mountains and across the lake. They kept an easy silence as the waves and swallows and occasional fish – far from his eager hook – went about their quiet business. She told me later that it was hard to think of anyone who would have been a better companion than Hank at that moment. Sweet, calm, kind, reliably at peace with the sunrise and the water and other simple things. We counted on him for this.

I met Hank when I was still bruised from the end of a marriage to a very different kind of man. Not a bad guy at all – we’re still very friendly – but marriages don’t end in the midst of good times, and I was nearly incapacitated by grief at the end of ours. I met my husband when I was 18 and, amid all the other glorious attractions, I fell in love with his family. They were a vivid and volatile crowd that loved to argue politics. Their constant roar of opinion was an exciting contrast to my family of origin, of whom a rather caustic elderly neighbour once said, when several of us paid her a visit years after we moved away: ‘Ah, the Ohlsons. Always so nice! Always so polite! Always saying the right thing!’ My 18-year-old self thought that niceness was terribly boring, but my marriage racked up so many years of conflict that I lost enthusiasm for sparring. I didn’t quite realise that I wanted a man as peaceful and sweet as my father, but I found someone like that, in Hank.

A friend who worked with him introduced us. She warned me in advance that Hank had just gone through his own ‘marital carnage’ (my phrase, not hers, one of my favourites from the play Hurlyburly) and had recently emerged from three inpatient weeks of treatment for alcoholism, but that he was a really, really nice man. According to Alcoholics Anonymous – he was attending AA meetings daily when we met – he shouldn’t have got into a serious relationship with anyone until after a year of sobriety, but we dismissed that as needless orthodoxy and fell in love.

I look back and wonder if those falling-in-love brain chemicals cloaked the darker Hank that would emerge

I remember my own brain state back then. How driving across town to Hank’s apartment seemed like a mythic journey. How fevered I was, even just sitting together at the shoe store to try on sneakers, our arms brushing as we bent to tie the laces, whispering while the salesman went off to search for sizes. We were amazed that we could feel this way again, and I actually began to long for a time when I’d be able to think about something else. Now I look back and wonder if those falling-in-love brain chemicals cloaked the darker Hank that would emerge.

I recently asked my friend Ceci McDonnell about this. She’s a therapist back in Cleveland whom I emailed after that first phone call, asking for help figuring out what was going on and how to get Hank services. I called her again to get some help thinking through this piece. ‘Yeah, the chemistry of falling in love is not unlike mania,’ she said. ‘There’s the same urgency and intensity and that might have postponed his depression.’ If someone is on the bipolar spectrum, alternating cycles of mania and depression wrack the body and brain. ‘We know they can throw themselves into something to prevent crashing. But there’s an inevitability to the cycles.’

At first, I had no idea that Hank was on any sort of spectrum. For the first four years, he was a sunny presence. During my marriage, I had kept my own moods strictly policed. My husband was moody and spectacular – he had played a role in a local production of Hurlyburly – and I became the dull rock that kept the moving pieces of our family life from flying away. But Hank was ever calm, ever positive. He glowed with a golden optimism. Because of him, I took new risks with my career, and my life grew bigger. My own moods began to leap in more magnanimous arcs. And when I arced into darkness, Hank was a great comfort. This is a little creepy, but I sometimes had this image of myself tucked safely inside his chest, foetus-sized, next to his big heart.

I wonder sometimes if I was too greedy with that comfort.

Then he started to struggle with depression. There were some disturbing things going on in his life – cutbacks at work, family problems – and he seemed to lose what I thought of as his effortless effervescence. He was always a big TV watcher – a source of some strife between us – and became someone who spent all his non-work hours on a couch with a clicker in his hand. It seemed obvious that this ceaseless electronic parade was a drug of some kind, and it wasn’t an effective one. I made the kind of irritating noises that people make when they don’t understand another’s depression. Take a walk! Take a class! Let’s do something fun!

He became hypomanic, although I didn’t use such an alarming clinical term to describe it. Annoying is the word I used

The bleakness improved and then it got bad again and then it improved and then it got bad again – it’s hard to remember now how many cycles there were and how he emerged again with his sunniness restored. Difficult as his depressions were, none were life-destroying, as the mania has been. I probably would have described them as funks. So when I look back now, I search for examples of irrational exuberance that might have foreshadowed the mania. All I can remember is the month he took an antidepressant that was being frequently advertised and prescribed as a tool to help people quit smoking. He became hypomanic, although I didn’t use such an alarming clinical term to describe it. Annoying is the word I used. He was chipmunk cheerful, talking fast and zipping from one project to another and so free with happy bromides that I couldn’t be in the same room with him. When we went to our couples book club, everyone gaped as he yakked on and on about the book, the meal, his day at work, the weather, whatever. I was relieved when he tossed the pills in the trash. But not long after that – or was it before? – he began taking antidepressants regularly.

When Hank had his manic break – when it became obvious that something alarming and new was happening – it was hard for other people to realise that it was a manic break. They hadn’t been privy to his depressions, as I had, and whoever heard of someone becoming bipolar in their late 50s? It’s an unusual presentation, said people such as my therapist friend McDonnell and others, since most people present with bipolar when they’re in their teens or 20s. But it can happen, especially when someone has a close relative with bipolar disease. And Hank did.

One therapist suggested (asking me not to quote her, since she hadn’t met Hank and this was just conjecture) that Hank had perhaps flipped into mania because of the antidepressants. She said that when someone has an underlying and undiagnosed bipolar condition, medicating just the depressions can have that effect. Wow, I thought. A few weeks later, I was sitting at breakfast with a new OkCupid date, a scientist and a sweet guy who told me – over two buttermilk pancakes and three strips of bacon – that he lost his lab and job and marriage because of a similar late-onset mania. His doctors weren’t sure why it had happened, but one theory was that antidepressants had flipped him over. ‘I can tell by the look on your face that this is a deal-breaker,’ he sighed.

Yet the connection between antidepressant use and mania is less clear than he’d suggested. According to Gary Sachs, the founding director of the Bipolar Clinic and Research Program at Massachusetts General Hospital, studies have associated a slightly higher flip rate with only one antidepressant, Effexor. As for the others, he told me: ‘There may well be a small risk.’

For reasons unknown, Hank and the OkCupid guy are medical outliers, with the shitty luck of being interesting cases. While I don’t wish a lifetime of bipolar illness on anyone, I wonder if the people who develop this illness young are better equipped to deal with it. The onset often comes when they’re still within their family’s grip, when they are surrounded by people who consider it their job to watch over them, and they have years to become scholars of this flaw in their brain. As they mature and make new connections, the people who love them are alert for symptoms and quick with intervention. Sachs told me that some people suspect Mark Twain might have had an undiagnosed bipolar illness. He and his wife developed an elaborate signalling system for those times when his moods veered dangerously out of control, for instance at a dinner party. One signal to shut up, another to get up and leave the room – and he heeded them, because he had spent decades with the disease.

‘She was like the tail on his kite,’ Sachs told me. ‘People with these conditions are always looking at the world through their current mood. But if they have good supports, they can do extremely well.’

Hank never got the chance to build up the kind of supports he needed in his crisis. It took all of us too long to figure out what was going on and where to turn.

A few days after that first phone call, Hank flew back to Cleveland. I begged him to call one of the therapists or doctors that he’d seen in the past few years. He had met with most of them only once or twice, but there was a psychiatric nurse with whom he had something approaching a therapeutic relationship: she knew him from the outpatient alcoholism programme he’d attended when he and I were still together, and I think he had been in touch with her after he was hospitalised for a series of panic attacks.

But he wouldn’t call her. He wouldn’t go to the hospital. He was fine. He was better than he had ever been in his life! Why hadn’t he ever realised how good life could be! He agreed that he needed to sleep – he hadn’t slept in days – and promised he would nap immediately, as soon as he hung up the phone. When I called later that day and he didn’t answer, I hoped he was still sleeping. Instead, he was off at the Apple store, buying laptops and iPads and accessories for his TV. He spent $10,000 in an hour or two, a lot for a man with a modest income and, aside from his retirement account, no savings.

Hank sauntered out of police headquarters in the exquisite coat and hat a stylish French banker might wear

That was the first time we – my daughter and I in Portland, friends back in Cleveland, Hank’s mostly far-flung family – noticed the crazy spending, although it had begun before. He went to Pottery Barn and bought new dishes and wine glasses and linens and piles of artful baubles to entertain the many guests he was sure were going to come to his parties. He paid the tab for rooms full of strangers at restaurants and offered to take a neighbour’s children shopping and let them pick out whatever they wanted. He emptied out Home Depot’s woodworking department and piled up boxes in his basement for a new career making fancy garden trellises. He bought high-end guitars and displayed them on stands in his living room, poised like a choir ready to sing. He decided his real career opportunity lay in starting a band and opening a recording studio in his apartment, so he started inviting other musicians to join in and left the woodworking equipment to moulder in his basement. He called a drummer friend, who said he didn’t want to drag his drums up the stairs to Hank’s apartment to rehearse, so Hank added a $10,000 drum kit to the collection. He displayed a heretofore unnoticed fine eye for clothing and filled his closet with couture.

Months later, he called a mutual friend in the middle of the night to come pick him up at jail, where he’d been held after the umpteenth noise complaint from his neighbours. What most stunned our friend was the sight of Hank sauntering out of police headquarters in the kind of exquisite coat and hat that a very stylish French banker might wear. The afternoon he was released from one of the many psychiatric hospitals or psych units or detox centres that held him from one to 10 days in the six months that followed that first phone call – never long enough for him to stabilise – he bought a fully loaded Toyota Avalon.

How did he pay for this stuff? He was on disability leave for a few months, receiving some sort of paycheck and building up debt. When he lost his job, he drained his 401k. When he ran out of cash, he sold some of his new stuff to buy cigarettes and food.

I chastised him for all this spending, but I was a carping Cassandra to his whirligig Bacchus. He was incredulous that none of us understood how wonderful his life was. When he called to regale me with the details of his Pottery Barn purchases, I dutifully began to tell him how deluded this was, but he interrupted me. ‘Darling, stop worrying! I have plenty of money! I have all the money I need.’

‘I guess you must have won the lottery,’ I said.

‘That’s right!’ he answered, jubilant that I finally got it. ‘I won the fucking lottery!’

I was, in fact, a tiny bit… jealous isn’t quite the word – but I could see how much fun it would be to blow all my retirement savings on everything I wanted, right now. When pulled to the surface, that unconscious thought disturbed me because I had done something like that when I moved from Cleveland to Portland. Aside from a few pieces of furniture inherited from my mother-in-law and an illuminated globe that had been in my parents’ house when I was a kid, I wanted my Portland domesticity to look completely different from my Cleveland life. I sold or gave away all my old stuff and prowled eBay for earthenware plates and brightly hued Swedish cookware and barware with images of fanciful chickens, all from the 1950s and ’60s. I hired a contractor to fix up my new little house in Portland and a landscaper to make a stone patio and garden. I didn’t spend all my retirement savings, but I spent more than is probably wise and must now be more careful about money than I ever have been. At the time, all that spending felt… wonderful.

Yet my spending was different from Hank’s. People with bipolar disorder, said Hilary Blumberg, director of the Mood Disorders Research Program at the Yale School of Medicine, lack balance in the prefrontal cortex, the part of the brain right behind our foreheads that, among other things, regulates emotions and impulses. That part of the brain works a bit like a see-saw, with positive emotions generated on the left and negative emotions on the right – resembling the cartoon images of someone pelted with opposing advice from the angel on one shoulder and the devil on the other. In a manic state, the positive emotions from the left side of the prefrontal cortex exhort ‘Do it, do it, do it!’ and overwhelm the right side’s ‘Bad idea! Bad idea!’ Or, as Blumberg put it more carefully: ‘If there is less activity in the right hemisphere, the positive emotions of the left hemisphere may become more prominent relative to negative emotions.’

Hank’s left prefrontal cortex was king of the mountain for six months. His family and friends and I fretted and conferred after that first alarming weekend down south. Finally, one of his children called the police and a friend convinced the cops that he might be suicidal and they took him to the emergency room. And truly, we were worried about this, because how could flying this high not trigger a dizzying fall? How could sweet, mild, taciturn Hank abide the loud and extravagant Hank who had taken over? But he was held only for a day that first time. Then another day the next time. Then 72 hours. Then five days. Then a week. Then 10 days. Each time, a social worker or nurse would call me – he always gave them my phone number – and promise they’d get him sorted out. Then I’d hear he had been released, long before the three or more weeks that it takes for the medications to work, when I knew from his phone calls that he was still manic and delusional. I called one of the social workers after he had been released, which was pointless – it’s not as if she was going to hunt him down and bring him back. And anyway, he was off buying a car.

Who knew what to do? The new Hank was social, out and about, always at a table or bar, wandering the streets knocking on doors, walking into friends’ homes unannounced. It was clear that this Hank was different – brightly aggressive, clueless to their discomfort, unfurling skeins of wild talk that they didn’t know how to take. Was his band really going to perform at Playhouse Square, and was he really talking about a contract with Tommy Emmanuel’s manager? Had he really bought that great house which had been empty so long and was he really building a recording studio inside? His delusions were so convincing it was hard for his friends to understand what was real.

And since he was still drinking, it was hard for them to figure out if what they were seeing was extreme alcoholism or something else. I was sure from that first phone call that it was something else, a manifestation of brain sickness distinct from alcoholism, and I felt a spray of fury every time someone said that he would eventually hit bottom and realise he had to take responsibility for his behaviour – as if this was something a 12-step programme could cure.

‘That’s an old-time Alcoholics Anonymous idea,’ Ceci McDonnell told me. ‘And I get it: most people need discomfort before they want to change. But when you have bipolar illness, there is no bottom because the illness is so distorting. If someone is delusional — meaning they have fixed irrational beliefs – the intensity of those beliefs remains strong even as things keep getting worse.’

some of the same brain areas affected by bipolar disorder are also affected by substance abuse

Some of us thought Hank’s excessive drinking caused the mania, but many experts now think it’s the other way around: that people with bipolar illness drink to self-medicate against the fearsome swings of their psyche. In any case, there is a connection between the two afflictions. In one study, the US National Comorbidity Survey found that people with mania were up to nine times more likely than the general population to have an additional lifetime disorder of drug or alcohol dependence. Blumberg tells me that some of the same brain areas affected by bipolar disorder are also affected by substance abuse: ‘It is possible that there are genes that are involved in the development of the prefrontal cortex that lead to vulnerability for both bipolar disorder and substance abuse, and that that is why the two co-occur for some individuals.’

No matter the cause, getting someone treatment for mental illness is agonisingly tough in a health care system where long-term, therapeutic relationships have been trashed. ‘To help someone with these disorders, a therapist must know them well and have an ongoing connection, and that rarely happens any more,’ McDonnell told me. In addition, privacy laws passed in the mid-1990s are often so rigidly interpreted by health care institutions that families aren’t told what’s going on. When families aren’t sure what the diagnosis or treatment plan is, it’s hard for them to help, try as they will.

Patient rights laws have also placed the burden for making medical decisions on the person least capable of making them – the person with the mental illness. If you have a problem with your heart or your kidney, you yourself are highly motivated to take care of it. I have several loved ones who didn’t want to become experts in breast cancer, but became crack researchers and advocates for their own care after they were diagnosed. Hank didn’t think he needed treatment. He thought he was wonderful! And because of patient rights laws, no one could force treatment on him without a court order. ‘These patients have the legal right to refuse treatment, but they’re not in their right minds,’ McDonnell said.

Not so fast, the Virginia psychologist Russ Federman told me when I complained to him about patient rights. ‘Just because someone is delusional doesn’t mean they are dangerous or can’t manage themselves on a day-to-day basis,’ he said. ‘They may not be able to live very effectively in society, but the distance between being moderately symptomatic and being manic or even psychotic is not very far. Protecting the rights of individuals and protecting individuals from the adverse impact of their psychopathology is a delicate balancing act.’

Imagine, Federman said, someone else who feels like spending all his money. This imaginary person is not mentally ill, but has accumulated assets and lived prudently and suddenly decides that he’s tired of being prudent. ‘That person has the right to spend all his money. From a legal perspective, it’s not easy to differentiate between your friend and that hypothetical person.’

But I could differentiate. I sometimes felt the only moral response was for me to get on a plane and go back to Cleveland and hunker down among the empty boxes in his apartment and make sure he got treatment – to bang on doors and stand in hallways and make someone take care of him. Or set him up in my spare bedroom in Portland and watch over him. I blurted this out to my daughter one day and she said: ‘Are you sure you want to do that, Mom? That would be a huge responsibility.’ And the answer was no. I wasn’t willing to give up my life for him, and that’s what it would have meant.

‘you need at least 50 beds for a population of 100,000. In 2008, England had 62 beds per 100,000. The US only had 14 beds per 100,000’

Even if we could revise the patient rights and other well-intentioned laws to be more helpful to people with mental illness, there is still a fundamental flaw in the system. There are not enough hospital beds for the mentally ill and especially not enough public hospital beds, since people with mental illness have often blown through their resources and can’t get private care. ‘The rule of thumb is that you need at least 50 beds for a population of 100,000 people,’ said Doris Fuller, the executive director of the Treatment Advocacy Center in Arlington, Virginia. ‘In 2008, England had 62 beds per 100,000 people. The United States only had 14 beds per 100,000. And that’s the same number of beds that America had in 1850, which is when we decided to treat mental illness as a disease.’

Instead of funding our hospital system to care for mentally ill patients, we let our police and jails take care of them. As Nicholas Kristof illustrated in his New York Times column on 8 February this year, America’s largest mental health facility is a Chicago jail. And it’s not as if Chicago is special. ‘Nationwide in America, more than three times as many mentally ill people are housed in prisons and jails as in hospitals,’ Kristof wrote.

In the sixth month of Hank’s mania, despair began to knife through. He’d call me weeping, asking why I had not come to his party, asking why no one ever came to his parties. He started to panic about money, because even though he was working on three lawsuits that were sure to make him a multimillionaire – and me, too, and my daughter, all of us would be millionaires! – he needed money right now. He was furious when I wouldn’t come to Cleveland and deposit some funds into his checking account. His calls finally became so frequent and angry that I turned off my phone. He was in what’s called a ‘mixed state’, in which mania and depression flicker in rapid succession. This is when the risk of suicide peaks.

That’s when he got lucky; the system kicked in. My daughter found a county mental health crisis centre, and I called them over and over. They went to his apartment twice, then told me they were working on a plan – not that they could tell me what it was, because of privacy laws, but it was a relief to hear. Next thing we knew, he had been court-ordered into treatment for three weeks.

He called me often from the phone in the hallway. After about two weeks, he began to sound like himself again – no rage or elation. But he was surprised anyone thought he belonged there. Group therapy was minimal. He wanted to feel the weather. He wanted to go outside.

It wasn’t the suite of healing therapies I wished for him. I know people with money go to places with gardens and unharried staff and healthy food. But at least he wasn’t alone in his apartment, his delusions blooming and then exploding, the hunks of cheese marbleising on the table and the wine uncorked.

‘I’m starting from scratch. I have no job, I have no money, I have nowhere to live, and I’m a fucking idiot’

And then suddenly, he was out before the three weeks were over. He sounded dazed and sombre, and everyone around the country who had been following his progress rejoiced. His kindest of landlords planned to delay eviction and let him move out at a less-frantic pace. His children planned to help him sort through and sell his purchases. Other relatives were helping him with funds, though he worried a paycheck wouldn’t come soon enough to prevent his car from being repossessed. ‘I have nothing,’ he told me. ‘I’m starting from scratch. I have no job, I have no money, I have nowhere to live, and I’m a fucking idiot.’

I assured him that he wasn’t an idiot, he had just been sick in his brain and had made some terrible decisions. I tried to shine up some optimism, but really, if I were in his place I’d drink myself senseless to block out the terror of this piper he would soon have to pay. I had wanted to reach through the phone and shake the people at the many treatment centres who told me they were releasing him because he wasn’t a danger to himself. Wasn’t the wreck he’d made of his life dangerous enough?

Within hours of his release, he was drinking. Within a week, he had called the suicide hotline and was admitted to another psychiatric unit. This time, Hank didn’t hector the staff to let him go. Finally, he had seen the bleak landscape carved by his mania, knew this was now his country, and wanted the help of many steadying hands before trying to make his way.

Note: Hank’s name and some identifying details have been changed to protect his privacy.

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