My name is Rob and I’m an alcoholic. My name is Rob and I’m an addict. I’ve said those two lines in various rooms on and off for over 20 years now. It’s not a secret. Everyone who knows me knows I’m an addict in recovery. Everyone I work with. Everyone.
My name is Rob and I have bipolar disorder with ultradian cycling (aka ‘rapid-rapid’ cycling) with occasional psychotic episodes. I have never said that in a room full of people. Very few people in my life know this. Only one person I work with is fully aware of my condition, or understands any of its severity and complexity.
While I have mentioned being “bipolar” to select people in my life, I have rarely given any details of my condition, instead relying on popular conceptions (and misconceptions), which do not usually include episodes of psychosis, or the kind of frequency with which I swing between poles. There are 2 major types of bipolar, along with mixed, nonspecified, cyclothymic (lower-grade), and finally the most severe form, with the worst prognosis and highest risk of suicide: “rapid cycling.” The sub-category of “rapid-rapid,” or ultradian, cycling is the most unusual. While many with bipolar experience finite periods of ultradian cycling, some of us simply…live there. If I were to even double the baseline minimum for standard rapid-cycling (so, 8 periods of mania or depression within one year) it would constitute the most calm and uneventful year my brain has ever known. People with rapid-cycling, even the non-ultradian type, are also worsened by taking certain medications that are standard of care for many with bipolar, such as antidepressants, making it more difficult to address problematic symptoms.
I’ve spent many years in 12-step meetings talking and hearing about shame. Let’s say shame and I are well-acquainted. I have plenty of shame about my years using and lying and cheating and basically not being a very good person. I’m still ashamed of things I did while I was active drinking and using. Sometimes horrifyingly so. I wake up some nights sweating—other nights I stay up and can’t shake some major or minor action where I was in the wrong. I am sucker-punched repeatedly with regrets about actions from twenty-five years ago that sting so much they feel as if they could have happened yesterday. Like most addicts, I have a hard time forgiving myself, a hard time letting things go, a hard time showing myself the empathy I would show a friend (or stranger) who made a similar mistake. Even though I have heard literally thousands of others in recovery talk about these similar feelings, it’s probable that I will never be able to fully let go of the shame surrounding some of those worst memories of my actions, like the time I relapsed after 15 years clean, and started stealing my wife’s pain pills, which she needed for a serious medical condition, letting her frantically search the house for her honestly prescribed medication, that she didn’t misuse, so that I could get high. Maybe I should forgive myself for that and maybe I shouldn’t, but when I think of it, yes, I still feel a lot of shame.
Still, despite shame over these actions, I am not ashamed, at the core, of being a drunk. An addict. Of that self-identification. “He’s one of us,” a friend in recovery might say to me about someone I’ve just met, and we all know what that means. I identify with other addicts, regardless of their walk of life. There are things we all just know, about where one another have been. I have come to peace and acceptance about my membership in this tribe long ago, and I feel at home with this part of my identity.
On the other hand, I’ve come to realize I am ashamed about having a mental illness.
While there are genetic components to becoming an addict, there is still a level of choice involved. I can (and do, at least today) choose not to drink. I can choose not to take pills. I need help with this…but, ultimately, it’s my choice. I can work the steps and somehow make my way through life with more tools than I used to have to deal with shit.
I can’t not be crazy. There is nothing I can do to stop the fact that I have bipolar disorder and that my cycles are about as rapid as they come. It’s just there, in a shaky paternal bloodline that has two schizophrenics and a suicide. I am pretty much the sane one in the family. Some things help—both medicine and behavior patterns I’m supposed to stick to. But nothing’s going to make it go away and, in fact, the condition I have tends to get worse with age.
People say that addicts are, at heart, control freaks. An addict knows exactly how s/he’s going to feel in five minutes. In this paradigm, maybe mental illness is the ultimate loss of control. I could say that’s a great metaphor for how none of us is really “in control,” but I don’t mean this metaphorically. I mean it in the sense of losing control of my limbs, having spasms that can resemble a seizure and may last up to six hours (a side effect of brain stabilizers I don’t dare go off), and talking to myself in response to voices in my head, and moving furniture so that in the morning I’ll find a coffee table in the bathroom and not remember how it got there.
If I am ashamed of what I did when I drank and used drugs, I am ashamed of who I am with my illness.
*
When I was young, all my heroes were junkies and drunks: Charlie Parker, Keith Richards, Hank Williams. When I started to write, I bought fully into the doomed artist myth of people like Hemingway and Fitzgerald and Bukowski. Being a fuck up was cool. Who wanted to live in the straight world, anyway? And I, like a lot of people in recovery, still cling too much to what I tend to view as my more interesting, wild years. I tell stories about what it was like when I drank and used, and I have a certain misguided, childish pride in having survived to tell the tales. In fact, I survived more out of dumb luck and the fickle gods of chance than anything else. People who did far less ended up dead. People who did more are still with us. It’s a crap shoot, and I got incredibly lucky, all things considered.
Still, I tell stories about when I used and drank all the time. I have very little filter in terms of who I’ll tell about those days. I’ve been accused—both with affection and sometimes a tinge of judgment—of having no boundaries. I’ve told plenty of stories about my bad years in front of fiction workshops. I had a student last year, a quick witted and sharp, funny woman who asked, in a class forum, “Do you have any stories that don’t end with you passed out in an elevator, or pissing blood, or in a drunk tank? Don’t you have any stories that end with you having a cup of tea and going to bed early?”
And, sure, of course I do. Especially these days, if I’m not up for nights on end with the insomnia that’s part of my manic swings. But my many evenings at home watching Mad Men or falling asleep with a book on my chest aren’t the stories I tell. I still tell the old stories. Because some part of me—a part that also makes me cringe at my own immaturity—still thinks it was somehow cool to have lived my life off the rails for so many years. A misguided and wrongheaded pride. But me feeling ashamed about still finding pride in my old stories—which are really the stories of a very messed up and sad and fearful kid—is a different kind of shame than the shame I feel about having a mental illness. My shame at trotting out all those old stories and continuing to socially identify myself with them is part of the maturing process most people in recovery have to pass through, sooner or later. It’s something I’d talk about in a meeting, or to a friend, or maybe even in that same fiction workshop where I just talked about pissing blood. It’s a shame that feels…like growth, and honesty: the kind of thing it helps to share. Whereas my shame about my mental illness is something I have never talked about. And even now, knowing it probably is “healthy” to do so, I feel sick with dread, remembering all the years I believed that being mentally ill meant I was somehow rotten at my core.
*
For the record, I do have boundaries. Most people would be surprised to find out that I am actually a very private person. I’ve cultivated a persona and I play into it. The bad kid…the fuck up. I have that routine down. In my youth, it tended to bring out the Florence Nightingale in women, and then, as now, it’s also gotten me plenty of laughs from friends of both genders. Sometimes, I have been willing to play the jester in my own life, hyping up this part of myself to hide other parts that were more vulnerable—to avoid exposing what I’ve seen as the deeply broken part of myself.
All you have to do is look at a bookshelf or turn on Celebrity Rehab to see that addiction narratives don’t shock anyone anymore. Addicts are “popular.” We live in a culture where it can seem like everyone wants to be troubled. Nobody wants to be crazy. There’s something else, too. When you’re an addict who stopped, it’s something of a redemption tale. And everybody loves one of those. When you have a mental illness that will, if anything, get worse, people don’t really want to hear about that. No one wants to hear “I had a psychotic episode last week” when they ask, “How’s it going?” And they really don’t want to hear it again, when they run into you the following month and ask the same thing. The story arc of mental illness does not conform to the redemption tale. The anecdotes of mental illness, at worst, alarm people, and at best, make you a downer.
*
These are the stories I don’t tell:
When I was twenty years old, a roommate checked me into the psych ward after I had been up for days on a manic high, nudged to its limits by liquor and cocaine. I started seeing and hearing things and talking to people who weren’t there. He told me I was “acting pretty fucking crazy.” I have no memory of this. I remember being in a manic episode (one of the greatest feelings on earth, if you can stay on the safe side of psychotic), talking fast and feeling like my brain could handle ten times the amount of information it can normally process. And then I remember coming to with a doctor asking me questions about whether or not I wanted to hurt myself or other people.
It turned out that was the first psychotic episode of my life.
Another would come a few years later in Florida. This was a rare episode, because it was accompanied by delusions of grandeur, which are not usually a symptom of mine. I became convinced I had a plan for the president that would end all the world’s suffering and result in world peace. I remember trying to convince my friends that they had to get me to the president. The next thing I remember, it was four or five hours later and I was walking the streets of Sarasota, Florida in cut-off jeans and no shirt, hearing low mumbling voices (I can never make out what they are saying…they are always just out of reach…an eternal frustration) and having visual hallucinations that always seem to include seeing people who aren’t there out of the corners of both eyes.
The first thing I fully remember is coming to on the shore of the Gulf of Mexico with cuts all over the bottoms of my feet from a shattered windshield. I must have walked over the glass. I have no memory of it. I was still hearing mumbling voices and seeing things out of the corner of my eye, but I was lucid and was aware that they weren’t there. I walked into the water, which was nearly as warm as a bathtub, and soaked my bloody feet.
*
I suppose, since I’m being honest here, I might as well mention that the auditory hallucinations are more or less a constant companion in my life. There are a few key differences between my normal state, vs. a psychotic episode, the most essential being that during a psychotic episode I lose cognizance that the sounds aren’t real. Also, in my typical daily state, the noise in my head isn’t always voices: on bad “ordinary” days, it sounds like a jackhammer, but other times it may just be a dull roar, like listening to the inside of a seashell or the surf. Sometimes it sounds like a crowd murmuring. For this reason (along with the fact that I have an anxiety disorder, which often accompanies bipolar), I don’t find being in loud crowds pleasant. This stands in opposition, of course, to the fact that I play in a punk band. Sometimes, my life has to stand in opposition to what might appear to “make sense,” because what would make sense would be too cloistering and limiting to pass for a full life, and so there are things I do, with frequency, and even well, despite the fact that they are prone to bother me.
My baseline mood, my normal, is what’s known as hypomania. A state of high energy and racing thoughts. Most of the time, I can function really well, unless I hit a depressive crash, in which case it seems like a Herculean effort to get out of bed and shave or do the simplest tasks. I am depressed a lot less frequently than many people with bipolar, for whom depression can tend to be the baseline, and I feel extremely lucky about that, although sometimes I feel so lucky that it can veer into denial about…well, how often I am depressed. Still, overall, the hypomania is one of the sure upsides to my condition. It’s what lets me write books and songs and get obsessed with projects, my energy surging and everything seeming to click into place.
My hypomanic baseline sometimes swings, of course, into a full manic episode. I’ve gotten lucky with my mania—many people can’t function at all. They get bombarded with so many thoughts they become paralyzed with an excess of options as to what they can pay attention to. I lock in. I get extremely focused. My brain jumps around, but (in the absence of psychosis) I do have some control over it. Manic episodes are when I feel most alive. I’ve finished all my books in manic states.
My wife used to have to take my phone away from me when I was manic, because she knew I wouldn’t want to call or email anyone in that state, and reveal what my head was really like—she knew that afterwards, I’d be humiliated. What I tended to do when I felt out of control, throughout my entire adult life, was isolate and hide. Recently, though, I’ve trained myself to write only to one friend, who knows.
During a manic state, here’s what an email from me sounds like (both of what follow are actual emails):
…i dont care about anything bad at the moment-ha! I’m in a little bit of a glorious manic high that clicked in about 4am when I couldn’t sleep and I started to get the taste of coins at the back of my tongue (a sure sign that I’m either about to snap manic or break down) and I’ve felt like so VERY aware and alive (though, yes, sick)…tired on one hand but so awake in another I feel like I’d electrocute anyone who shook my hand and it’s like my head is this in between quiet and loud….well, it IS loud, but it’s like it’s loud with the smallest things. Like I could stand on the road and hear ants eating if I tried hard enough….everything is always happening and we see so little of it, you know?
In the middle of a psychotic episode, on the other hand, I write this:
I’m up COUSIN IS aka in the, it’s out . WW siciarehbbgg What happen last nigh the point to WHAR GOIN G, just say get Guns. hope your not going crazy with this…you seen before golf all asleep at the a report. But at
so much white green)?.58″9!?355? sell in my dory..So try hit to push THST hard. I’m skiff arts (kerchief I cease he’s ahead of me.
Um sooty it was a main night…/-and, I didn’t try TI semi it in you I hope you’re had jadecsnl
To the latter, she responds: “Go to bed! Do not write anyone else! GO TO BED!” And, for some reason, I listen to her. Even when I’m incoherent and in the midst of hallucinations and struggles to get whatever it is I’m trying to say across, I have listened. This has helped me learn to trust myself, just a little, in those states. Also, the fact that someone could get these letters from me and not run for the hills makes me wonder whether maybe the thing I was hiding from all those years wasn’t other people’s judgments, but my own.
*
Other stories I haven’t told:
Last Spring, around the time of my last book’s release, I was having the worse few months I had ever had with my illness. For thirteen days at the start of March, I slept on average one hour a night. Things were getting worse by the day, but I hadn’t lost it yet. I’m reminded now of when Jake Barnes asks Mike Campbell how he went bankrupt in The Sun Also Rises. “Two ways,” he said. “Slowly at first and then all of a sudden.”
It started with the worst episode I’d had since my 20s—since I got clean. In the middle of watching a movie with a friend, I started kicking my legs in spasms (often a sign that I’m about to have an episode). I tried desperately to fight what was happening, terrified to break down like this in front of someone. The last thing I remembered, I had curled myself into a ball, clenching my body to try—in vain, of course—to keep the spasms from wracking me. After that, my memory is gone. I apparently started answering questions to an interview that was happening only in my head. I paced. I mumbled to myself and twitched. I tried to fix my headphones for a very long time when they were actually not broken—I just couldn’t figure out how to make them work. I paced some more. I moved furniture around (this is a common symptom). I had visual hallucinations. The next thing I remember, six hours had passed, and I was asking why the coffee table was in the bathroom.
After that incident, my doctors put me on a medication to stop psychotic episodes when I felt one coming on. The doctor told me that if I started seeing or hearing things that weren’t there, I should take this pill along with a sedative. “But make sure,” he told me, “that you’re somewhere you can sleep, because this combination of medications will knock you out.”
A few weeks later, still not sleeping much, and having lost twenty pounds over the course of six weeks, I felt another episode coming on. I was at home. It was okay if it knocked me out. The medicine worked. I slept my way through most of that episode.
Another episode started while I was in a taxi with a friend, on my way to LaGuardia airport. I started answering her questions, only to realize she hadn’t said anything. I got dropped off at the airport and realized I was at the start of what felt like it could be a major episode. I sat in the terminal, hearing voices and seeing people, while there were real voices of people around me talking and the squawk of the PA system. And people really were walking by me in mad dashes trying to get where they were going. And I was having trouble telling the real voices from the ones in my head and telling the real people in my line of vision from the ones I was hallucinating. I began to sweat. In under 30 minutes, I would have to go through security. After that, if I could handle it, I would be locked in a plane while in the midst of a psychotic episode. I started toward security and then realized I couldn’t go through with it. I should take my meds and see if I could stop the episode. Only once I stopped the hallucinations could I go through security. Security was scaring the shit out of me. I would be acting like a crazy person. I could just as easily land at Bellevue and not on my plane.
I took my pills and brought my carry-ons and my guitar to a quiet corner on the floor. The next thing I knew, it was six hours later and I had missed my flight. But the pills had worked again, and I was out of the episode. They found me another plane and I made it home in, more or less, one piece.
I still wasn’t eating right. I wasn’t sleeping. I was, in short, falling apart.
After hiding my illness from people since my late teens, in the end I fell apart in a very public forum. It was the 2013 weekend of the LA Times Festival of Books. My fourth book had just come out and there was a release party at a bar in town. A bunch of my friends were there. My editor had flown in from Chicago. I drove in to LA, two hours from the desert where I was then living. Nearly without exception, people started asking me if I was okay from the moment I got there. I said I was fine. And I felt okay, actually. One of the strange things about the body and brain is how they normalize things. I had been headed for this breakdown for months, but it had started to feel normal to me. I was tired. I was, looking on the bright side, happy to be thin again. I thought I looked pretty good, actually.
I would later be told by a bunch of friends that they were worried about me and shocked at how I looked and how I was acting “out of it.”
The next night was the LA Times Book Prize awards ceremony. And I fell asleep during it, almost the minute it started. I struggled to stay alert but couldn’t focus. Eventually, I was so bad, I climbed over several seats to work my way out of the auditorium, and I went and shot pool with some college kids at a bar on campus while I waited for my friends to get out of the awards ceremony. The motion must have kept me awake, and I managed to reunite with my friends. After this, I don’t really remember much. From what people later told me, I would be lucid and laughing one moment, and then asleep or slurring my words the next. This happened in front of a bunch of peers. Writers I know. People I work with at the university. I was later told that, while a friend was driving me back to my car, I was fading in and out—talking for a while, and then falling asleep mid-sentence. My friends finally refused to let me drive. I don’t remember any of this.
The next day—at the Festival of Books—I started to realize that people had been talking about me. Two friends worked up the courage to ask me point blank if I had been using again. I told them I hadn’t. A third asked if I’d been drinking. My answer, again, was a no. But that’s exactly what an addict or a drunk would say if they were using or drinking. So, I could tell that I wasn’t being believed. Throughout the festival, it became clear that friends and colleagues were talking about my behavior. Several people had asked my boss (and good friend) if I was using again. This became a rumor that I was using again.
I was angry. I couldn’t believe that I hadn’t gotten the benefit of the doubt from my colleges, when they were all aware that I had been clean—with the exception of one relapse I have openly spoken about—for nineteen of the last twenty years. I was hurt that I was suddenly part of a rumor mill. People had no idea what I was going through—what it was like to live in my head. No sleep. Psychotic episodes. Dramatic weight loss. Manic episodes that normally occur a few times a month instead happening several times a week—sometimes for three days in a row. I could feel like god at nine in the morning and be flat and depressed by six at night. Only to start the cycle over again the next day. I had taught all term long while slipping in and out of psychotic episodes. I had stayed on top of things. I’d done a book tour. I’d gone to the AWP Conference in the middle of all this happening to my brain and body. I thought I deserved a medal for holding it together, but there didn’t seem to be any medals coming my way. I thought if any of them had any idea how hard I work just to function sometimes, they wouldn’t be talking the way they’re talking. I had stayed on top of my classes while my brain and body were falling apart…and this was the thanks I got?
It would be a long time—a year, essentially—before I would realize a few things to snap me out of my anger and hurt and resentment. Most of those realizations would boil down to: but how could they know? I made jokes all the time, without thinking twice, about how much I wanted a drink or an Oxy. None of these friends had ever heard me talk with any seriousness or depth about my bipolar. Some didn’t even know I was “mentally ill,” or have any way of differentiating the way I glibly talked about my “craziness” from the way many artistic/literary types self-deprecate and exaggerate their own neurosis. As it turns out, I was living a paradox: I was too ashamed to talk about my mental illness, because I didn’t want to be seen or treated differently…and yet I wanted to be commended for how hard I was trying, how well I was holding it together, considering. I wanted to hide, yet I wanted people to read my mind. I had spent my life isolating when in an episode, and here I had fallen apart in public in front of large clusters of my friends and colleagues. I was deeply embarrassed, which fueled my anger and hurt. I was also afraid. What if this was the “it gets worse with age?” I had always heard about?
It turned out I had clinical exhaustion. A neurologist told me it would take six months to fully recover from the taxing demands I had put on my brain without knowing it. He told me the episodes would continue, but would lessen in intensity and duration if I could stick to a strict sleeping pattern: going to bed at the same time every night, and trying to get 7-8 hours, not my usual 5 (which had fallen to between 1-3 hours a night for a month in the Spring). I should eat at the same times every day, three small meals, not the single meal I tended to eat late at night. Food, unless I’m with friends and enjoying their company, has always been something of an afterthought to me. There was no quick cure, though I was bad enough, the neurologist said, that I could have, in the past, been sent for the “rest cure” at some medical facility. They don’t tend to use these terms anymore (much like bipolar’s previous name, manic depression), but I’d had, more or less, a nervous breakdown.
Most people wouldn’t peg me for a private person. But I learned a long time ago that people really don’t want to know if you have a mental illness. Sometimes in our culture where everyone seems to want to be “different” and “damaged,” people may actually think someone with a psychiatric diagnosis sounds exotic and interesting from the outside, but it’s not “interesting” to have someone fall asleep standing up in front of you while you’re talking to them—it’s not exotic or colorful or sexy to watch someone twitch and spasm for hours on end and try to keep them from walking out into traffic or running across broken windshields or looking for the president. Most people don’t really want to deal with all that—they prefer the funny fucked up former addict. Even your best friends, the ones who really love you, may not get it. They think you can snap at any moment and suddenly you’re the guy from A Beautiful Mind, spending months or years on end in some make believe lab writing incoherent numbers on the walls. In fact, my psychotic episodes have never lasted more than hours. Friends may also just be plain scared for their own safety, even though I’ve never in my history gotten aggressive with anyone, or been a danger to anybody except myself.
We’re still in the dark ages in how we view (and even treat) mental illness. Some of my secrecy has been out of shame, but some has been because I genuinely believed it was nobody’s business but mine. Even as I’m writing this, I’m wondering who, after reading it, may treat me differently now, not even meaning to. And, lastly, when you come out and talk about something like this, there’s the danger—one I fear—that people will think you’re asking for some kind of special treatment. I function. I get my shit done. I just go crazy every now and then. It’s taken me twenty-eight years since my first episode to try and not be ashamed of who I am and of what illness I have. I’m not sure I’m there yet, but I know it has to start somewhere.
My name is Rob and I have bipolar disorder with ultradian cycling with occasional psychotic episodes.
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*featured photo shows an image of a brain with bipolar during an MRI
