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Inviting In The Wolf

Inviting In The Wolf
Living With Bipolar Disorder

I am very pleased to be asked to share with you my thoughts on living with bipolar disorder. The panelists who are speaking with me have very interesting and useful things to say about their lives. Like my colleagues, I have had a difficult time with this illness, and I too live by rules. The importance of the basics - eating, sleeping, taking medication as prescribed - and the rest of Abe's commandments are really important things to know about and to practice. Helena's accomplishments and her sense of humor about it all is a lesson to all of us about living our lives gracefully. It is not my intention to contradict either of these people, rather I hope to describe the different dance I do to the same drum.

I have bipolar I illness, rapid cycling type. I was diagnosed with it at the beginning of this decade, however I have lived with it for about 25 years. At the time of my diagnosis I was newly separated from my husband of twelve years, had been employed by the same Mental Health Center for eight years, had recently graduated from college seventeen years after my class, and was raising two small children in a house in a rural section of Rhode Island. Because of my clinical training in serious mental health problems, I brought to the diagnosis a good deal of theoretical knowledge about the illness. I thought I knew what to expect, and I thought I knew what I had to do. I really did do exactly what I was told to do by everyone. I took my medication as prescribed; I can honestly say I never missed a dose. I kept my life structured: I worked; spent time with friends; paid attention to my children; was mindful of stress; and joined a support group. I proceeded to get worse. No medication seemed to work effectively, my work suffered, my relationships suffered, my kids were out of control, my finances were a mess, my house was in chaos. This went on for a long time: gradually I became a completely unreliable employee, I lost all but one of my closest friends, I lost my ability to parent effectively, my house ended up in foreclosure, and I was hospitalized six times in a two-year period. I planned to kill myself after Christmas 1995, about five years after being diagnosed and despite the best psychiatric treatment and psychosocial indicators at the outset that appeared to bode well for recovery.

As I prepared to talk with you today, I reviewed the journey I've made in the past two years. I thought I'd talk with you about the rules I live by: I'm fanatical about sleep and limiting activities, and I do a few weird but helpful things like tanning to get artificial sunlight in the winter. And then I thought I'd talk about how I look at this disease a little differently: I experience it more as a disease of energy than of mood. In depression, what I have is too little energy, in mania I have too much. Much of my life is spent trying to nurture and balance energy. That is why I am a sleep hygiene fanatic: asleep right after Leno's monologue, awake with an alarm clock at 8:00 am every day, and I leave the shades open so my brain perceives the arrival of the morning gradually. In depressed, or low energy phase of the illness I live by a "one thing per day" rule - either I limit myself to driving only one place per day or I allow myself to accomplish only one task per day around the house. I've found that several consecutive days of "one thing per day" can refuel my energy supplies. When I am hypomanic, or high energy, I let my body do the work of burning it off, either by cleaning or exercise or repairing things. In high energy I try not to leave the house: high energy in a store invariably leads to overspending, high energy in a group of people invariably infects them and makes even more energy for me. I've begun to suspect that depression is the body's demand for rest in order to replenish energy and mania is the body's frantic attempt to reset itself if the energy gets too far out of balance. I have also learned to store reserves of energy, because I have finally come to understand that life is not predictable, and just because I have enough energy in "the bank" to handle routine demands, does not mean I have enough energy on hand if life throws me a curve. And life with two teenagers is full of curves.

Anyway, that's what I thought I'd talk about, but reflecting on how I live got me to thinking about why I live the way I do, and how is it that I have developed such a peculiar view of a well documented illness. And I realized some things.

First of all, once I was labeled with it, I treated this illness for years as if it was an impediment to a normal life. As I look back, I spent a lot of energy fighting with it. I treated it as if it was a wolf baying at my door, and I threw every medication in the arsenal at that door in order to reinforce it. When things finally unraveled for me in '95, and I finally agreed to try electroconvulsive therapy, things changed radically for me in relation to the illness.

ECT had been suggested a few times and I refused. Not only did I fear it, but my boyfriend and my parents all thought it was a crazy idea. By the time I agreed to it, I really didn't care if it worked or not. I just thought that if I went along with it they'd let me out of the hospital and I could continue with my plan to die. I had a series of eight treatments in January 1995. The first few were bilateral - both sides of the brain - and almost debilitating. The rest were unilateral - one side, and the eight I've had since then have all been unilateral. My boyfriend - my only friend at the time - got me up at 4:45 am. every other day for three weeks in a row in order to be at the hospital for 6:00 am. The car broke down the morning I was scheduled for my ninth treatment, and the psychiatrist who was administering the series told me I could stop for a while - for which I was totally grateful.

I spent the next two months in bed. Looking back, I would definitely describe myself as an invalid. I could not remember how to drive or how to write a check, telephone numbers, people and large parts of my life were just gone. So were my feelings. Frankly, when I look back, I'm amazed that I came back. But I did, just as surely as the folks who were treating me told me I would. But what is really interesting to me about that time is what happened while I seemed to be doing nothing at all. This was the first time in many years that my life was quiet. My parents stepped in and took control of my finances, which resulted in an immediate reduction in chaos. That birthed another of my eventual rules: delegate essential tasks. It was not easy to give over control of my finances, but it has definitely been helpful. It has not been easy to stop working, but for now I must delegate the essential task of earning income to Social Security disability. My kids had never seen me in the condition I was in as I recovered from the initial ECT series, and they were amazingly kind and supportive and considerate. My boyfriend took care of the shopping and other household and vehicle maintenance tasks, so I had a lot of time and a pretty empty mind. It was during that period that I opened the imaginary door between me and the "wolf" of the illness, and invited it in. This would not have been possible if I hadn't attained a period of freedom from the illness, which is the best argument I can think of for trying new treatment if existing treatment isn't working... it just might work.

So there we were for a couple of months. Just me and this wolf that I had done everything in my power to avoid. I was finally able to look at bipolar illness in a period of relative calm, and instead of applying limits to it, I began to ask it about its true nature. I began to find out just what having bipolar disorder means to me. This is the one experience I value over all others with this illness. In my professional life, and in my years as a patient, I have learned volumes about diagnostics, signs and symptoms, neurotransmitters, hormones, cell biology, medications, stressors and the importance of stability. However, it was not until after years of living with the illness unsuccessfully that I realized what was wrong. What was wrong was that all that knowledge - although it empowered me to advocate and encouraged me to be compliant - really had very little to do with how I - Kathryn - experience having the illness in my own unique way. I only found out about how this illness affects me as an individual when I stopped following everybody else's rules for living with it and asked for its help in developing my own. I listened to the "wolf" and it taught me how to get along with it.

My current way of thinking about living with bipolar disorder sounds crazy but makes sense if you apply a different conceptual framework to it. This requires that you accept that men and women are different - and if you struggle with that you can borrow my son and daughter for a few hours and you'll be convinced. Now, a great deal of what we know about bipolar disorder we have learned primarily from research. Researchers are primarily male. Drug trials have, only until recently, been run exclusively with male subjects. Things are changing, but for now most doctors are male. And finally, despite the emergence of a new understanding of gender differences in development, what our culture perceives as good and has been based on the male viewpoint that prizes autonomy as the pinnacle of successful living. I know I'm stepping into tricky territory here, and the point of this little excursion is not to criticize science, or doctors, or our culture. And certainly not men: I like men ! The point I am trying to make, perhaps too cautiously, is that based on my own experience and the literature of the field of women's development, I have begun to suspect that living with this illness may be quite a different process for women than it is for men. As men develop, their sense of identity and competence is - at least for now - rooted in a sense of oneself as separate, self-sufficient and somewhat disconnected. For women, something else seems to be true. Women appear to define themselves in terms of their connectedness. We seem to see things more relationally. Our development appears to be more like an ever-enlarging web of contexts and relationships rather than a straight, independent path through life. That is why I can stand here and tell you with a perfectly straight face that for me living with bipolar disorder is as much about my relationship with the illness as it is about anything else. How I live with this illness is by definition a process of mutual give and take. For me, bipolar disorder seems to regulate my energy level, and I respond to it by doing what I can with what I'm given. I am still trying to get to know it and take care of it as best I can. It is a very fluid process that is not unlike being the mother of a two year old. It demands that I nurture and respect its differentness from me, while still producing the occasional tantrum that results in an outpatient ECT treatment. For the most part, at this time, bipolar disorder and I are getting along pretty well.

Years ago I would have told you that my life goal was to do the best I can to proceed with my life despite the fact that I have an illness. I thought this was the goal of successful treatment. It is a desirable goal if you adhere to the idea that an autonomous, self-sufficient life is intrinsically better than a life viewed from the perspective of ever-increasing connections. Based on my recent experience and the time I've had to think about what living with bipolar disorder means to me, I would have to say the goal has changed. Living with bipolar disorder is no longer about living a highly compartmentalized life that strives to move forward despite the condition of my mental health. Things are inside out now: the illness is not only something to be considered first, but also something to be consulted with as I move through my life.

I spent years fighting with the "wolf" of the illness, trying to insulate myself from it and keep it outside. Nowadays, when I think about living with bipolar disorder, it's more like having a wolf for my house guest.