Madness (36 page)

That's today—and tomorrow, and next week, and next month, and for how long? I'm trying to picture what a day will be like, what my life will be like, a couple of years from now, when you're reading this book. The future, and even the past and the present, are blurry concepts when you're mentally ill. Maybe a few years from now, I'll have left my senses entirely, abandoned my life as if
it were a couple of books and some socks lying on the floor. But that's not what I believe. How could I?

I know some things will be the same, no matter what year it is. I'll start the day with a mouth full of pills. I'll stagger around for an hour, dizzy with the onslaught of chemicals coursing through my brain, rerouting errant neurotransmitters, herding neurons into their proper rows, creating connections that need to be there and blocking reactions that don't. Maybe it will be one of the really entertaining days when I've just had my meds changed, and we'll have a little Fun with Side Effects, one of the meds interacting with another in such a way that I'm walking into walls and seeing double until two in the afternoon. Or maybe not. Maybe my chemistry will sort itself out quickly and start chugging along like a good fellow. Maybe (hopefully) science and medicine's recent surge of interest in the brain will result in the development of medications that will make a difference in the daily lives of people like me.

Is it possible? Maybe I won't dread the days. Maybe I won't wake up with my chest clenched in terror. Even now, already, the morning panics that have been with me for so long are starting to lessen. Even now, madness sometimes holds off a little while, allows me to watch the sunrise before anyone else in the world is awake, when I can imagine that it's just me and the rising purple light and the chattering birds. Maybe I'll be lucky, and every day I'll wake up and find only Jeff and the dogs in the bed. Not the heavy, breathing body of madness, attached to my left leg, that I drag behind me wherever I go.

I want to think that the impossible can happen—I will no longer need to spend so much time devoted to the daily micromanagement of my moods, the constant monitoring of my thoughts, the second-guessing of everything I do. What if everything that went through my head wasn't inflected with the arbitrary whims and twitches of a broken brain? What if the madness wasn't always trying to speak through my mouth, manipulate my emotions and perceptions, pull the levers like the Wizard of Oz? What if my
husband, friends, parents, didn't have to ask me again and again if I am all right—watching me, fearing that every minor shift in mood, every moment of excitement, every gloomy sigh is a sign that I'm flying or falling again? What if I could just have a bad day? A good one? Be in a regular old mood? What if, one day, the illness was not immediately present, right behind my eyes, right at the front of my brain, but had backed off a little, so that my thoughts were my own, my moods were just moods?

The promise of that freedom almost makes me dizzy—the freedom to stop thinking about my illness, to speak for myself, decide for myself, just go about my day. Maybe I would trust myself to do the right thing. Maybe I would trust my mind not to suddenly defect.

Sometimes, even now, I can. Sometimes, I feel as if the world has opened up around me, as if I have been staring at my feet for years and now have lifted my eyes, and there are sunshine and trees and days of rain, and there are people in my life. I am greedy for connection. All of a sudden, there are possibilities everywhere. I could leave my house. I could wake up unafraid. I could write a new book. I could plan for the future. I could travel, see all the theater I want, listen to jazz for days on end, read all the books in the world. I could live a very long time. I could be free of this monster.

I could be normal.

But I know this illness. I know its cycles. My days will always be different from your days; my idea of stability isn't your idea. The things I do, the choices I make, the places I go are limited to an extent by this illness—I can't stay up all night, cross many time zones, work too much, cram my calendar with things I'd love to do, hold a regular job, though some people with bipolar certainly can. I can't have the insane professional life I dream of—I can't write books
and
do journalism
and
academia
and
get a PhD
and
give lectures
and
teach college all at once, and some of those things I'll never do. I'll never backpack around Southeast Asia or hike through the Middle East—I can't go anywhere far from a hospital with modern meds. I could have had children—there are people with bipolar who do—but I didn't. Some of the things I won't do are things you take for granted; many of them are things I want to do, but can't. This isn't the end of the world. It's just the way things are. Managing mental illness is mostly about acceptance—of the things you can't do, and the things you must.

I wonder if I'll ever lose the anger at having bipolar, or the sorrow I feel for all the memories I've lost or never made. What about the years I can't remember at all? What about the moments with my family or with Jeff that I should be able to treasure but can't, because they are lost to inaccessible parts of my brain? What about the times my friends needed me and I wasn't there? There is grief for the years that slipped by, guilt at having hurt people, and for having needed so much and given so little for so long, regret about the goals I never attained.

But there is hope too. It's been a long time since I've felt hope. I might have been mad, but in spite of it I did things, heard things, was inspired by things, wrote things, held conversations, worked, loved, even if I can't remember it all. The episodes come less often these days, and I have more time to build memories in between. Now, I am finally able to piece together some semblance of a coherent life.

So I am there at Megan's gallery in New York. I am there in a fabulous leopard-print dress. There are people everywhere. Megan is luminous, astonished at what is happening to her life. Her work is beautiful, the colors overwhelming, and everyone walks around talking about it, blown away. I am here to see it. I am here with her. I am present in a moment in her life. I am here with Ruth as she sits on my couch at two
A
.
M
.
, her skinny legs tied in a knot, smoking my cigarettes and crying in frustration when her partner Christi has to go back to the psych ward. Ruth wants to know if Christi will ever improve, if her madness will lift long enough for them to build a life. I tell her it will. And I know that it will. I am here when Jaime, recovering from the breast cancer that smashed
into her life when she was only twenty-four, finally breaks down years after the surgery and starts realizing what she has been going through. I listen to her on the phone and I want to fix it and I know I can't so I listen some more. I am there when Lora gets laid off and spends the next six months buried in a dark place, unable to write, compulsively listening to music, and I am there when we go running through New York in the middle of the night in search of Italian pastries, and I am there when she's finally laughing, and I don't miss a minute of it. I am there with my father up at the lake, listening to the loons call and playing Scrabble and getting my ass kicked by my aunt. I am there with him at lunch, with his white hair and shorts with knee-high socks and his roaring laugh. I am there with my mother when she curls up in my reading chair and tells me about her latest adventure, about Italy, Russia, Transylvania, Vietnam, the Mexican ruins in the west. And I am there with Jeff when we take a road trip, the wheels humming, looking out the windows at the cornfields and the thickets of pines, both together doing something we love, talking about the lives we have and the lives we want, and it all helps me learn him again, brings him closer to me. The madness leaves me alone for long enough to be with the people who make my life my life. And in the years that are coming, I will have the great gift of watching these astonishing people become who they are.

How do we know who we are or what we can become? We tell ourselves stories. The stories we tell are what we know of ourselves. We are a creation, a product of our own minds, a pastiche of memory, dream, fear, desire. My memory looks like a child's collage, or a ransom note, incomplete and full of holes. All I have is today, this moment, to work with. I am writing my story as I go. I am inventing myself one moment, one experience, at a time.

And that's all right. It means I can choose who I become. It means I can write my future. I can create a person, write a story, full of hope.

The mind is the seat of all that we are, the source of all we
create. As strange and imperfect as mine may be, I also owe my career and passions to it. It is the source of all we think and feel—and while I feel and think, as Byron said, a bit too wildly at times, I also delight in the workings of the intellect and imagination, the ways that people are able to feel with and for one another, the deep experience of feeling at all. My brain sometimes departs from the agreed-upon reality, and my private reality is a very lonely place. But in the end, I'm not sure I wish I'd never gone there. I find value in having been to the places I've been. While there are days when I wish to God I could trade brains with someone else, just for a minute, just long enough to get some peace, I wouldn't exchange the life of my mind for the life of another.

I am who I am. This is the way it is: a balance, maybe an uncomfortable one. It's about doing all the necessary, frustrating, boring, exasperating, annoying, banal everyday tasks to keep the episodes at bay, but accepting that they'll come at some point anyway; structuring my life tightly in order to function well, but being flexible enough to deal with the unexpected; embracing the bizarre notion that sometimes things might go wrong—but other times they might not. I try to build a future out of contradictions; madness is only a small part of my life, yet sometimes it completely takes over and tries to destroy me.

Both things are true. That's all right. It has to be.

And it is. I relish my life. It is a life of which I am fiercely protective. I have wrested it back from madness, and madness cannot take it from me again. I will not throw it away. So what if it isn't a normal life? It's the one I have. It's difficult, beautiful, painful, full of laughter, passing strange.

Whatever else it is, whatever it brings—it's mine.

• American adults who have bipolar disorder: 5.8 million (2.8% of the U.S. population)
  
• Position of bipolar on the World Health Organization's scale ranking causes of disability worldwide: 7
  
• Year the Surgeon General gave his first report on mental illness: 1999
  

• Life expectancy of an adult with serious mental illness: 25 years shorter than that of a person without
  
• Bipolar patients who have attempted suicide: 25%
  
• Bipolar patients whose suicide attempts have been lethal: 15-20% (This is the highest suicide rate of any psychiatric disorder, and more than 20 times higher than the rate of suicide in the general population. About half of all suicides in the U.S. can be attributed to bipolar.)
  

***

• Year the term
  manic-depressive insanity
  was first used in medical texts: 1896
  
• Year the term
  bipolar
  was first used: 1980
  
• Year the first medication (lithium) was discovered to have an effect on manic patients: 1948
  
• Year the first medication designed specifically to treat bipolar was developed: still waiting
  

• Average age of onset: 23
  
• Average age of correct diagnosis: 40
  
• Average number of years from the onset of symptoms before a bipolar person or his/her family seeks treatment: 10
  
• Number of bipolar sufferers who have been misdiagnosed at least once: 70-75%
  
• Bipolar people who are not receiving treatment at any given time: approximately 50%
  

• Bipolar patients taking mood stabilizers who go off their medications because of side effects, the desire for manic energy, or impaired insight: 50%
  
• Number-one risk factor for relapse into a bipolar episode: going off meds
  

• Odds that a person with bipolar I will also struggle with substance abuse: 60:40
  
• Odds that a person with bipolar II will: 50:50
  
• Rate of alcoholism in bipolar men: three times higher than in the general population
  
• Rate of alcoholism in bipolar women: seven times higher than in the general population
  
• First-marriage divorce rates for people with bipolar disorder: twice as high as that of people with any other psychiatric disorder; three and a half times higher than the rate of divorce in the general population
  

• Annual direct and indirect costs of bipolar disorder in America: $45 billion
  
• Number of visits to the emergency room between 2000 and 2003 by people whose primary diagnosis was mental illness: four times that of all other emergency room visits
  
• Major reasons for this difference: lack of effective treatments and coordination of care for people with mental illness; inaccessibility of treatments for patients without insurance
  
• Bipolar and schizophrenic people who have no health insurance: 50% (The diagnosis of mental illness makes it far more difficult to get, and keep, insurance, and most insurance plans offer only limited coverage for mental health services and medications.)
  
• Primary cause of a lack of effective treatments: insufficient research funds
  
• Projected breakdown of research funding for the 2008 National Institutes of Health:
  
• Bipolar: estimated at below $250 million (not included in NIH's 2008 report)
  
• Diabetes: slightly over $1 billion
  
• Depression: $334 million
  
• Schizophrenia: $363 million
  
• Other brain disorders (not including Alzheimer's, which receives $642 million): $4.7 billion
  

• Current medications: Lamictal, Tegretol, Geodon, Wellbutrin, trazodone, Ativan, and a number of supplements that are thought to support mood stability, including a high dose of fish oil and a strong vitamin B-complex
  
• Some habits that help me: a structured schedule, including daily mood charts, keeping a journal, yoga (I'm serious), cardiovascular exercise, meditation, baths, massage, going out of my house and interacting with another human being at least once a day, long periods of sunshine, and, during the winter, my light box. Also, seeing my doctor and therapist frequently, seeing my family and friends several times a week, and, critically, staying sober.
  
• Weekly cost of my meds: around $300, one third of which is out of pocket
  
• My side effects last week: double vision until 2
  P
  .
  M
  .
  , dizziness, poor balance, headaches, nausea, digestive problems, low blood sugar, anxiety, shaking hands
  
• Weekly cost of therapy: $217, out of pocket
  
• Cost of psychiatric visits: $300 per session (at least two a month, sometimes more), only partially covered by my three forms of insurance
  
• Cost of my last hospitalization: $45,000 covered by insurance; $10,000 paid out of pocket