by Jaime Lowe
I asked Angst what he thought drove that special kind of creativity, and he said something I had heard before: “You are deviant in your thinking, you leave that normal pathway to jump somewhere else in your thoughts, and that is creative. Being unconventional in your emotional jumps, you go away from the usual in a positive sense.” In Setting the River on Fire, Kay Redfield Jamison wrote about how Robert Lowell’s madness was inspiration for his poetry and then later braided his experiences into his work when he was lucid enough to actually write. He was one of the earliest patients on lithium and wrote to Elizabeth Bishop in 1967, “I have a new doctor now, and there seems to be real hope that my manic seizures can be handled by a new drug, lithium, and that all my giddy reelings come from a kind of periodic salt deficiency in some lower part of my brain.” Lithium allowed him another decade of productivity, but in 1975 he suffered a toxic overdose and had to be hospitalized. He died of heart failure two years later. According to a study from Oxford University the life expectancy of people with mental illness is much shorter than their counterparts: “The average reduction in life expectancy in people with bipolar disorder is between nine and 20 years, while it is 10 to 20 years for schizophrenia, between nine and 24 years for drug and alcohol abuse, and around seven to 11 years for recurrent depression.” I worry about my life span sometimes. As I was writing this book, both Patty Duke and Carrie Fisher passed away and I cried because I felt like I knew them and I felt like they were shouting about things that I needed to hear. And shouting with confidence and aggression. The kind of aggression underappreciated by male therapists.
Years after the fire, I was chatting with Mike and asked him why he stuck around and why he helped me through that time when it was clear I was not normal. He explained that he didn’t know what my normal was, so it was difficult to gauge at first, but that also “I was always a little jealous of what you went through . . . you’ve had an experience that so few people have had. You’ve lost your mind entirely. It’s almost like you’ve been someone else.” There is something to be said for crossing over into a world lacking inhibition and reserve. But there is also danger in that.
Dr. Angst asked me, “What happens when you don’t take lithium? Have you tried?”
I explained my history, my compact answer of no. I can’t risk another episode. But sometimes I pine for a medication-free life and wonder if I might not be sick at all. The further away you get from it all, the less intense the memory. But then I think about everyone around me—my mom, dad, Marilyn, Jeff, Hana, H—and no, it’s not an option. Being on the mild end of the spectrum of bipolar allows for this kind of wishful thinking. “The diagnosis is a label, directions for treatment,” Angst said. “But the whole human being, the patient himself is a whole complexity of other phenomena which has to be taken into account. He has to be considered as a whole.”
I asked Dr. Angst what he would do in my situation. “All drugs have side effects. The kidneys are extremely important, I wouldn’t know what to do. You have started very early with the lithium? What happens when you lower the dose? Have you tried? The anti-epileptics also have side effects. I wouldn’t know what is the best.” He sounded sad for me, which wasn’t my intention. But I think he might have also been sad that there wasn’t a clear answer. “At some time in their lives, everyone has physical pain and problems, so everyone must have pain and problems of the soul.” Then he paused dramatically and whispered, “Everyone has a brain, which plays a major role in mental illness. I think everyone is—temporarily or not—a little mentally ill.”
I went back into the conference room, where a graduate student was speed-reading through her findings, ending her paper on cannabis by saying, “Thank you for your attention.” The actual presentations were for the most part interesting but deeply specific and beyond my level of understanding. It was hard for me to understand why researchers would study cigarette consumption in schizophrenics rather than the broader, more mysterious elements of why people are mentally ill in the first place. Some of the presenters had ideas that translated beyond academia. A Canadian researcher presented the idea of GPS tracking for the bipolar to identify when their patterns might deviate from the norm: faster moving, more shopping, going to new, farther afield places. It was an interesting concept, but there’s no way in hell you’d get a bipolar or schizophrenic patient to consent to being tracked. We all think we’re being tracked anyway. One clinical study looked at “feeling sensation seekers” and used a cartoon zebra whose stripes were unraveling just underneath a thought bubble that read, “I think it’s stress.” I asked every psychiatrist after their presentations and at coffee breaks, what should I do? One Italian psychiatrist—Dr. Guilio Perugi—got excited when I described my situation:
“Are you cyclothymic?”
“No, I don’t think so—I don’t know what that is. Is that different than bipolar?”
“It’s a more chronic state, happening more often but milder,” he said, while holding a cup of black coffee that sloshed back and forth. I watched the liquid drip on the cobblestones below as we talked about healing waters and kidneys and my various questions. Russ Pendleton, director of the conference but not a psychiatrist, sat with me at the end of three days and explained that most psychiatrists go into the field because they have had a certain amount of personal experience or exposure to mental illness. I asked him about one conference attendee who, like clockwork, would ask a deeply complicated question after each presentation, complicated to the point of absurdity, baffling most presenters who tried to respect him but would, more often than not, move on delicately.
“Oh, ya. He’s almost always in a psychotic state but very clever. He was diagnosed ten years ago and basically learned psychiatry. He comes every year; his papers are very chaotic.” I felt overwhelmed by information and psychiatrists but comforted by this community. I talked with the psychotic presenter and asker-of-questions—what would he do? He didn’t know, either; he had taken an eighteen-hour train to get to the conference and was set to head home, as was I.
I thought about the psychiatric advice I had picked up. Most said Depakote. Try the Depakote again. Do not give up on your kidneys. I couldn’t do anything right then and there in Rome, so I decided for the last night to try pasta instead. I felt that if I could face-plant in pasta, that was enough of a healing experience.
CHAPTER 23
DEPAKOTE (TAKE 2), LITHIUM TAPERING
I GOT HOME. I got to work. Same drill. We would slowly increase the dose of Depakote over months until I was on two full doses of mood stabilizers—the lithium and the Depakote. Then we’d gradually decrease the lithium, until I was only on the Depakote.
There were relatively few options left for me. I am a classic case of bipolar 1 with symptoms that are primarily expressed as mania as opposed to depression. Most of the other medications used to treat bipolar disorder are geared toward bipolar 2, which leans more toward depression than mania. Lamictal, Seroquel, Abilify won’t stop the manic.
I did what I should not have done and pored through Depakote chat rooms. The members wrote of agony—the hundreds of pounds gained, the lethargy, the dry mouth. I thought of Dr. Angst’s theories on placebos and how the Internet sleuthing counteracts all trust. I instantly worried that these side effects would affect me too. The things I worried about most were vanity-based—I didn’t want to gain weight or lose my hair. I considered my hair to be like Samson’s—I wasn’t me without it. Every morning I watched my drain clog with what was once my defining feature. It made me feel impotent and ugly and sad and even sadder that I was so vain. It made me angry too. I didn’t want to have to sacrifice more of me. So I kept training at Gleason’s, barely keeping up with Fluff, now seventy-two, who would grump about, telling me how much he hated Gleason’s and everyone there and yet he would show up four days a week to brag about his daily two-and-a-half-hour workouts and to fist-bump other trainers like Chicken and Blimp and Don and Darius and Devon
and Heather. I didn’t spar even though I craved the ring every Saturday morning. I couldn’t give up my days and I couldn’t have other bodily harm, like head trauma, not to mention the real possibility of kidney punches. I used the gym as a meditation. I shadow boxed, Fluff yelling, “Extend your arms” and “Stop hunching your shoulders,” disappointed that after ten years I had learned nothing, repeating the same bad habits. Some days I could imagine an opponent and slip and counter and throw combinations with the same ferocity as if I were fighting. But I was just circling the ring, losing myself in the effort of it all. The speed bag was a mantra; I’d count to the thump of the teardrop-shaped bladder hitting the wood, my feet moving in time. Sometimes I would go the full round without fucking up, counting to twenty and starting over again, practicing the same Zen ritual I learned from monks on State Street. I would breathe with the ball, knowing where it would shift based on the angle I hit it. Some days my arms were tired but I took my Iyengar yoga standing-tall lessons and elongated my rib cage to reach farther up to use the advantage for a better angle. The stink of Gleason’s was comforting, the red paint on the walls, a blanket. While I was there, I was generally not aware of kidneys, lithium, and so on. I was there to punch and get tired and be so tired that I could fall down at home. Boxing made me feel strong, even if I wasn’t.
This time the Depakote felt different. This time I was determined to will the medication to work. The side effects weren’t as bad. I wasn’t crying every day. I didn’t tear up at the mention of cheese. My hair fell out and I still had a hard time with digestion, but it wasn’t so bad. I wasn’t so outside myself. I thought this Depakote could work. I was optimistic. H was optimistic. My mom, who called every day to hear the tenor of my voice, was optimistic. My dad, who out of respect for my time, would call once a week, was also optimistic. Maybe that gang of psychiatrists in Rome was right. Maybe I was experiencing psychosomatic symptoms the first time—almost a year before—that my body and mind didn’t want the Depakote. Maybe I wasn’t ready to accept it then, thinking that there were other options. Now here I was swallowing those horse pills with aplomb. And feeling fine enough. Sure, I was tired but I was on a lot of heavy-duty mood stabilizers.
The first month of Depakote went well, increasing in 250-milligram increments every two weeks. I carried water around with me to anticipate dehydration. My mouth was always chalky. But that first month was okay. It seemed milder, easier, less invasive. Then I refilled my prescription and noticed that the pills were slightly different. They were gray and oval; the other ones were larger and white and had the stamp AN 757 on them. The corners were rounded slightly. I checked the orange pill bottles—one was called Depakote DR (for delayed release) and the other was called Depakote ER (for extended release). I asked Dr. Schwartz if there was a difference, and he said that I should check with my pharmacist. My pharmacist said, no, it should be fine. I checked online and couldn’t find conclusive information—except that delayed release had a shorter life span and needed to be taken twice a day, whereas extended release could be taken once a day. Why any pharma company would distinguish medication with the words delayed and extended, which are nearly interchangeable in application, was beyond me. Within a day of taking the Depakote DR, I was sobbing again. Bloated again. Angry, irritated, fat-feeling, hair-losing, sobbing, sobbing, sobbing. I wanted to join a death cult—I wasn’t suicidal but I could see virtue in dark corners, and staying in bed. I was scheduled to work during those weeks and seeing people regularly was a saving grace. The problem was, we were also increasing the dose at the same time, so I assumed that my symptoms were just a reaction to the amount or interaction of both medications. I kept taking the DR, sure that the slight increase in amount was what was affecting my body. I kept sobbing.
After a month, my general state got so extreme, I considered ditching Depakote again and staying on lithium. When I went to Gleason’s I felt a little barfy but worked through it. I was mad at Depakote. I was mad at not knowing whether it would stabilize. It made me feel possessed, like I had no agency over my moods. The opposite of what it was supposed to be doing. My medication was making me depressed, overwhelming me. I shadow-boxed and pictured a Depakote man, and just started throwing jabs and punches at a giant pill head. In my mind I had him trapped in the corner. Then later when I was hitting the heavy bag I had this war chant going through my head: “de-pa-kill, de-pa-kote.” I think if I did yoga I might have been embracing the medicine, welcoming it. But it was hurting me and it was hard to take and my instinct was to fight back. I had just started to decrease the lithium and, of course, I had the thought that maybe less lithium was making me loopy. Dr. Schwartz urged me to keep taking the Depakote, and I did.
In mid-October, I refilled my prescription again. And within twenty-four hours I felt . . . better. Clearer. Something was different. The pill was back to the original shape and size from two months previous and the bottle read ER. Two days later, I still had side effects but they were mild by comparison. I wasn’t murderous, I could eat reasonable amounts of cheese, and I didn’t feel like there was an alien baby violently growing in my stomach. I called my friend’s mom, Norma Juzwiak, a pharmacist in New Jersey, just to figure out if there was, in fact, a difference. She said, yes, of course, people have different reactions to different formulations of every medication, and Depakote was no exception. Why wouldn’t the pharmacist know or warn me, I asked? She said, they should have. Most don’t know the difference because its original application is for epilepsy. I kept a diary at the start of my lithium decrease and after I started the ER version for a second time, I wrote:
10/24/16: Last Thursday I decreased the Li from 750mg to 500mg. I have felt jittery and nervous since. Not manic, not euphoric, just edgy, like I have to stop every ten minutes to remind myself to breathe and slow down. I feel like everything I hold, I will drop. I feel the opposite of a bath, like tiny bolts of energy are shaking my skin. The Depakote ER is better, but I’m worried it’s too much better. There doesn’t seem to be an easy day when I’m not thinking about it. I’m trying to get to the other side. Upside, I’m not sobbing.
10/25/16: Still vomit-y. Just ate an apple slice and coffee and threw up some apple chunks while brushing my teeth. Not the worst ever, but gross and on my sleeve and less fun than flossing.
10/26/16: I’m running late and stacking tasks in my head. Need to remember to breathe; added one more necklace and had to remind myself that it’s just one more . . . necklace, not a manic episode. It kind of looks like rosary beads and I’m thinking of it as protection (but not in a religious way, not manic).
10/29/16: The low-grade real anxiety is hidden beneath outer work anxiety—what if the Depakote doesn’t work? What if these two years of transition were futile and I end up back on lithium, broken from another episode, nursing a broken kidney that just breaks down further with each miracle pill? I guess that fear won’t go away, at least not in the first year or two of Depakote. Drank water and coffee and then barfed it up. Maybe skip acid stuff?
10/30/16: Decided to give up coffee.
11/6/16: Realized my frequent pooping is prolly from Depakote; also there’s weird mucus in it. A friend on Depakote calls them “Depa Deuces.” Eating papaya to try to help the digestion issues and switched to tea.
11/7/16: Started zinc for hair loss. Saw Hana yesterday and started crying. Feeling a little stuck in this place and angry that my body doesn’t feel like mine. Not sure H understands but pretty sure he’s tired of hearing about it, which I get. I am tired of hearing about it. It feels all consuming.
11/14/16: Lowest blood pressure yet, post Trump. Confirms my belief that huge catastrophe is easier for me to handle than small things. Just after it was clear he won, I had a wave of calm. I had a dream election morning that he won and because of the tightness of the race and the constant watching and waiting, I think I was relieved. All this eclipsed my meds, my side effects, my focus on myself. The chaos and catastrophe got me out of my head.
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12/5/16: Depakote feels a lot smoother, less intense side effects. I got my period for the first time in a while since I’ve been on birth control and I think Depakote is affecting my hormones. Still losing hair, still have some left. Feeling a little less dramatic about it all.
• • •
THE ENTRIES BECAME more sporadic but covered my side effects and how I felt in general. Everything got calmer with time; I barfed periodically but for the most part Depakote ER seemed like it was taking. This was all luck—if I had been prescribed the DR initially in the second go-round, I never would have stuck with it. I might have been on the road to dialysis and a kidney transplant. This miscommunication or accident or psychopharmacologic lapse, even more than my mental condition, seemed insane.