Personal Accounts: Cresting

One of the great dangers, I think, of living with mental illness is the danger of feeling very well, working successfully, and being successful socially. You may ask, What is the danger in these things? The danger is something I call "cresting." Cresting can make a person feel that he or she is doing so well that medications are not needed anymore. (To be described as cresting, a person must be feeling well, not merely stopping medications because of side effects.) I have seen this many times with other persons dealing with mental illness as well as with myself. In my journey with mental illness, I gave in to cresting a couple of times before I learned of the danger.

I had always wanted to write and believed that to write well I had to have my mind clear so that I could be creative. Before my mental illness, I was very creative. A few months after my first episode of schizophrenia and subsequent need for medication, I took a chance and slowly stopped taking my medication. At first I took half the dose for a few days, then soon I stopped taking any. But I thought I was cured of my "nervous breakdown," because I felt so well. The first few days after I stopped, my body was withdrawing from the medication, which caused me to be "wound up" and unable to sleep. However, I did write, and I think I wrote well. The sad part is that I started losing touch with reality; sadder still, I was not aware of this. This was my first experience with cresting, a word I did not know at the time. I was rehospitalized within a month of stopping my medication. If I had been fortunate enough to recognize prodromal symptoms of my illness, I may have been able to see that I needed medication and accepted that, but I was not—and still am not—aware of the prodromal symptoms of my illness, except the early sign of inability to sleep.

The consequences of this episode were that I was rehospitalized and again given medication for mental stabilization. It was very frustrating for me. I felt very well without medication. My mind was razor sharp. But without medication I could not sustain life in the community. At the time I did not fully accept the seriousness of my plight.

Another time I decided I wanted to return to a place where I had vacationed, where I had made friends and had a very good time. I told my grandmother, "I feel fine. Don't worry about me. I feel so well I don't need medicine anymore." And I stopped taking my needed medication. I left the security of my family, left my careful lifestyle to pursue my dream of living like young women were starting to live in the 60s—in my own apartment, working, and socializing in the evenings. However, by the time I arrived at my destination, I again went into withdrawal from the medication, stopped sleeping, and, as silently and deadly as the previous time, slipped out of touch with reality—unbeknown to me but not to my friends.

I still did not recognize the one prodromal symptom that I today recognize as a possible warning of danger of an episode: sleeplessness. The consequence of this cresting episode was that I could not get a job to support myself. And I could not sleep, because I was too "wound up." Thus I lost the apartment my friends had gotten for me, and finally I lost my friends, who called my mother because they knew something was wrong even though I didn't. My mother wired me money to return home, and I subsequently went to the hospital, was again given medication, and again started my journey learning to live with schizophrenia. I was starting to know that the times when I was feeling very well and secure were times of danger for me.

I became conscious that I should not let cresting occur again. But 14 years later, when I was in recovery and had many responsibilities, cresting—which I had not thought about for a long time—resurfaced. And not recognizing it, I again succumbed to its deadliness. I stopped taking my medication for what I thought was a valid reason. I believed I had been well for 14 years and would not become ill anymore. So much time had lapsed since my last episode that I did not recall any warning sign of possible danger. In fact, I firmly believed I would be fine because I handled multiple responsibilities and handled them well.

This time cresting caused me to lose my family and to become homeless, and I ultimately suffered tremendous consequences of my cresting choice. This episode was so deadly that I could not reach out for help and lived in a homeless mentally ill state for about two years. When after two years I did have a moment of mental clarity, I asked for help. I was very malnourished, lost, frightened, and abused. I was looked upon as "the homeless woman."

For the next three years I slowly laid the groundwork for my next chance of living in good mental health. I also remembered about cresting and sadly realized that I had fallen victim to it again. I also started relating the past three hospitalizations to the common threads of feelings of wellness, a period of stabilization, self-confidence, a strong desire to be medication free because I missed my alert mind, my ease with creativity, and what always happened when I stopped medication: no sleep and a poorer grasp of reality with each passing day.

It is now 17 years since my last experience with cresting. For the past five years I have worked in the mental health field as a consumer-provider—or a peer counselor, as my position is sometimes called. I tell the persons I counsel about my cresting experiences, especially when I see someone confidently saying, "I have licked mental illness." I disclose my experiences with cresting and the severe consequences I suffered because of its seductive power. But cresting is difficult to warn against—it happens when all is well. When a person I counsel has had a cresting episode and has been hospitalized, I tell him or her about cresting. Sometimes my message is comprehended, sometimes not.

Today I feel very well, have attained some successes in my work, and feel vibrant in my life. I am still very aware, however, of cresting. Because of the time I spent homeless, I don't think I will ever forget it. Once in a while, thoughts slip into my head to make me wonder what I would feel like if I weren't taking medication: would I feel even better than I do now? In all honesty, I know I would. I vaguely remember how I was before the onset of schizophrenia, but I have come to accept that I have schizophrenia and that medication affords me the opportunity to live in the community, whereas before the late 1950s, most persons dealing with schizophrenia had no chance at a life outside an institution. I am now middle aged, and, to be quite honest, handling any more mental illness and hospitalization as a consequence of my own actions is something I don't want to experience again.

In the recent past, I was discussing with my doctor how my symptoms have seemed to lessen as I have aged. My doctor said, "That happens. I only keep you on a small amount of medication as a safeguard." Years ago, I would have jumped at the chance to see how I would do without medication. This time I said, "I never want to be without medication again. I can't take any chances. I have a good life." After I left the doctor's office, I didn't have a strong desire to think of the possibility of living medication free. I accept what is.

Cresting is a permanent word in my vocabulary. If I had to give a definition of it, I would say, "Cresting is to feel very well, to believe in one's regaining of full mental health so as not to need any supports for recovery, including medication. It is a dangerous and seductive state of mind." In my mind I know cresting is as deadly as schizophrenia. There is no halfway with this illness, nor with the care of it, and there is no room for cresting. Today I am in a safe place—not utopia, but I am safe and calm and content in many areas of my life. I don't need to "make my mark on the world." I think more about having lived with schizophrenia my whole adult life, and I think that overall I have lived a fairly normal life dealing with it.

I am not trying to revolutionize mental health treatment. Rather, I want to provide insight, or food for thought, about a pitfall encountered in dealing with schizophrenia and other mental illnesses that perhaps another person has experienced but did not have a name for.

Ms. Fox lives in Morristown, New Jersey. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.