Lithium's Other Face
By Robert Berman

One evening in the fall of 1971, as we were finishing our family dinner, the phone rang. I can remember getting up from my chair. That was the last thing I can remember until several weeks later, when I experienced flashing consciousness sufficient enough to understand that I was in the hospital. In fact I had sustained an instantaneous manic episode! The next thing I can remember clearly and this was weeks later, was a fleeting return to consciousness. I was in a quiet room in the cage of a mental ward. Although the entire period of hospitalization was to be remembered as one of occasional periods of foggy lucidity, I did come to understand that I had become mentally ill. I had lost my mind. I was forcibly detained, under the influence of "mental medications," and tentatively diagnosed as schizophrenic.

A word or two about me. At that time I was a 40 year old research scientist with a growing reputation at Bell Telephone Laboratories, a position I had held since I earned my Ph.D. in Chemistry.

I was married, with three children and lived in an exclusive area of a medium sized city on the fringe of the Pennsylvania Dutch area. I tended to be intense, driving, usually working evenings and part of my weekends. I was competitive both within the company and in scientific publications. At 40 years old I was generally recognized by my colleagues as a "late bloomer," a person whose creative abilities were still developing at this advanced age. (This is in comparison to the average person in science whose most creative periods tended to peak in their 20's and 30's.) In retrospect what I most probably was experiencing was a long progression through hypomania to its ultimate psychotic limit.

For the next six or seven years following my initial breakdown, despite the fact that I was continuously on Lithium supplemented by antipsychotics, anti-depressants and electroconvulsive therapy, I never experienced a euthymic, or beneficial hypomanic state. I continuously roller coasted from mania, sometimes flashing into the psychotic, and required hospitalizations about once a year. Mostly however, I resided in a state of depression, in a world of perception enshrouded through depression's haze, occasionally suicidal. I was too deeply depressed to be able to perform at the minimum levels of my job description, or to be able to live a minimal, normal personal and family life. Haze and fog are often used to describe depression. For me, however, it seems appropriate to describe both the emotional and cognitive blunting as semi-existence within the interior of a marshmallow.

Although my employer was as understanding and helpful as possible and gave me several opportunities to attempt to return to work while supporting me on their sickness benefits as long as possible, they ultimately concluded that I was hopeless and had to be let go.

Indeed, they found the means to stick with me to within the outer limits of their abilities; within the company's personnel policies. Fortunately my company had a disability pension benefit. They also helped me obtain social security disability benefits.

Approximately 10 years had passed since my initial episode. The depression lifted a bit and I decided to try to return to work. I think it is important to note that finding a position in line with my credentials, with minor modifications to remain undercover, took more than a year of sustained and diligent effort. In a unique stroke of good fortune, I located a job in the Boston area, a job which on paper was that of a doctorate level professional, but whose actual requirements were at the level of a bachelor's degree, or perhaps an experienced sub-degree level. Although the position was with a major corporation, the lack of scientific sophistication and competence in this newly formed division of the corporation prevented their recognition of my performance level as blatantly substandard.

Although I spent most of my time on the job in marshmallow-clouded concentration, my immersion in the area of microelectronics over the previous 20 years carried me through. At the completion of my first year with the company, I received a truly impressive salary increase along with assurances that the company was very impressed with my contributions.

Shortly after this, I was again struck by a hospitalizing manic episode. This time I was away from family and friends and was found on the streets wandering about trying to convert people. I was picked up by the police and taken to the hospital. Although the company did not take direct action at this time, I was brought to the attention of both the personnel and medical departments of the corporation. My cover was blown! I returned to work in a significantly more depressed state than I had been and my performance level was close to nil. About a year later, another manic episode ended my career. I was given a choice of resigning with a cash settlement or being fired on some non-medical basis.

So far I have only spoken of my illness in terms of my ability to work. It is noted that the influence on my family life and lives of my family members were very strongly leveraged on my illness.

As far a family financial support, we were living in an upper middle class style primarily on my income which as I mentioned before extended years into my illness. This included such expenses as private college education for our children. However, innumerable stresses developed in my marriage as the pressures of illness continued unabated.

After another year of job hunting, I found myself in another major corporation complete with an environment of competence and enormous new job starting stresses. Also, my family stress peaked and my wife left me. Within a month or two I was back in the hospital. At this time I was treated by an unethical and unscrupulous M.D., Ph.D., who decided to use me as a human guinea pig on a non-authorized basis.

He treated me with a dose of Proloxin Decanoate ten times the standard dosage level, a dosage higher than ever reported for human use. This required approximately eight months of hospitalization, a good part of it flashing back and forth into psychosis until my blood Proloxin levels regained usual dose levels.

Manic-depressive illness is brain chemistry gone astray. Thus, it seems so logical and straightforward to my chemical thinking habits, that a chemical intervention which will set our brain processes into their normal order is "just what the doctor ordered." Thus, back in 1971 I was put on Lithium - the miracle drug for manic depressive illness. In retrospect I am almost certain that this has had the most catastrophic effect on the course of my illness. It is important to point out that I was continuously on this drug for nearly 20 years in spite of the fact that there was never any evidence that it was of any benefit to me. I still suffered psychotic manic attacks about one per 16 months on the average. However, all of the doctors I've had, including my present one who has been treating me for the past eight years, continued to insist that I would be "much worse off" if I discontinued my use of Lithium. He continued this message even while I was on Lithium-Tegretol and Lithium-Depakote combinations. This message was repeatedly reinforced by my therapist who regularly somberly and ominously stated; "Remember, your most important job is to stay out of the hospital." Always assuming that Lithium was a key player in my treatment, he urged me to stay the course and take the prescribed medication.

Finally, too much, much too much of life had passed me by while I dwelled in a semi-alive state. Barely functioning, I was never really able to enjoy the rather rare pleasant things that came my way. Life, as I experienced it, was through my marshmallow. I neither experienced reasonable concentration abilities nor normal emotional perceptions. I can only conclude that either Lithium pinned me somewhere in the range of substantial depression, or that for me the drug itself produced these cognitive and emotional side effects.

I was nearly 60 years old. I'd had my first heart attack. I was living alone without much hope, in very modest financial circumstances. I had given up my dream of re-establishing my career. I had in fact given up my dream for a real life. My inner spirit finally burst through and I convinced my medical team that it made sense to slowly taper off Lithium, possibly well in advance of my research schedule, that any possible period of "real life," indeed I'd forgotten what this was, was worth any period of cycling I might experience. I was reinforced in this by having found several research articles showing negative cognitive and emotional effects of Lithium on both manic-depressives and in non-manic depressive college students, and as importantly, by my therapist's support and intervention.

During last spring, I slowly began to taper off Lithium, remaining only on Depakane. I awoke - over the period of last summer, to real life. I could still enjoy the simple pleasures of life. I began to understand my reading again, and in a new way. I was alive! And this has been a continuous growing, with the greatest gains in my emotional life, but also distinct cognitive gains. I've sustained one hospitalization due to a manic episode and a few minor lows, but have been hospital-free since. I am truly enjoying real life, real living and thinking during this period. This rebirth is still in progress and includes the miracle that I was soon after married to a wonderful woman.

I'd like to state that there is little doubt in my mind that the severe long term cognitive and emotional blunting effects of Lithium that I experienced were atypical, at the outer edge of the spectrum, but nonetheless created a private hell for me.

However, these effects are totally swept under the carpet in books that are generally accessible to us. Is this a message of hope to the "treatment resistant," or a full lesson in patience? Lithium side effects are eloquently discussed in Manic-Depressive Illness (Goodman and Jamison, 1990).

Over the past 20 years, during which I was subject to the dual influences of bipolar disorder and Lithium side effects, I employed coping techniques suitable to the course of my illness.

During the first five years I was obsessed with suicidal thoughts and planning, a fact I never revealed to my doctor for fear I would be institutionalized. Death was an omnipresent benevolent companion, a compelling lover and its idealization a source of calm, release, and spiritualism. It was a source of prayer which had the power to elevate my soul to religious experience, while prayer for return to health remained bitter in my heart and led to increased agitation. However my overriding fears about the fate of my family if I deserted them to embrace my secret lover superseded all.

I aimlessly wandered the streets of my neighborhood, mainly back and forth along the several blocks that enclosed my street, which was cut along the more gentle lower slope of a mountain and found my prayers and restoring calm. During periods of higher energy and agitation, I wandered the trails up the mountain and it was within this moss carpeted cathedral of mountain laurel and rhododendron which provided innumerable opportunities for action that I practiced my perverted faith best. It appears paradoxical to regard the perilous condition of suicidality as a self-limiting spiritual coping mechanism to action; however, I have recently learned that others have derived similar benefit in their delusion of nothingness.

During the several years before Bell Laboratories ultimately decided I had to be disability retired, they gave me several extended trial work periods. During these periods they attempted to aid my recovery in many ways, i.e., I was in a department containing other troubled people and under the supervision of an administrator especially suitable for this role. The most successful move that they made from my point of view was to change my laboratory partner to a fellow scientist who had a close relative with bipolar disorder, a fact that I did not learn for years. He became my friend both on and off the job, and indeed was the only friend I could communicate with during those years of isolation.

I believe that my last year in Reading, PA and first year at my new job in Boston was a "good period." Suicidiality was in the past. I was able to direct my activities and find a new job within the average time for this considerable task and fulfill the job's simple requirements. During the first two years in the Boston area, I lived by the side of a lake and learned to find more traditional beauty and calm in nature. During my second year I purchased a sailboat and learned to sail. Following my divorce, I lived close to another lake and over the years I enjoyed the restorative powers of its unique environment.

After my extensive period of hospitalization at McLean Hospital, I joined the Rehabilitation Outpatient Service. The programs were varied and extensive. They ranged from group therapy of various types, to working in the hospital library, to taking piano and art lessons, etc. Most important perhaps was the several hours per day that I would spend in the coffee shop, hours of growing friendship and conversation with people who could understand. Here we were people, not patients, sharing our concerns. This continued as a significant part of my social program.

As I climbed the path toward recovery, I became interested, almost obsessed, with the desire for a social life. I discovered a "singles club," a network of clubs covering the Boston metropolitan area and met a large variety of men and women. Almost all were divorced or widowed, each carrying the burden of their life's trials, broken dreams and emotional scars. The overall atmosphere of this organization was friendship, learning and protectiveness. Some were in stages of depression, others of alcoholism. All of us were seeking individual warmth and affection, to fill this vital need within us, even though many could not recognize their true goal, and others abandoned this as a non-achievable goal. Transient sexual adventurism was a fringe benefit. I began to date, keeping to my personal rule that within the first two or three dates outside the protective shell of the club's social programs, I would reveal my manic-depressive illness. To my amazement, some of the women were willing to accept me for myself. Some became good friends and in a few cases deeper relationships evolved, even though my lithium blunted emotional possibilities were limited. And on this dual social program I progressed toward wellness.

A dramatic turn in my coping occurred several years ago when Dr. Cole asked me to form some sort of patient group at McLean Hospital. After some research, I discovered the National Depressive and Manic-Depressive Association (since renamed the Depression and Bipolar Support Alliance) and was given their approval to form a chapter (Manic Depressive/ Depressive Association--MDDA-Boston). I managed to interest a few people and took up the burden of the Presidency of this fledgling chapter. I devoted every ounce of my energy to this project, working to persuade people to join, putting out a monthly newsletter, obtaining speakers, organizing public lectures at universities, contending with the problems connected with working with difficult people, etc. In retrospect the strong education program of two speakers per month (a format I started after two months of operation, and is still in place) was the largest factor in our acceptance and growth. For me this played a crucial role in building a background of knowledge and understanding upon which I grew, even significantly enough to ultimately question my continued use of lithium. In my opinion, knowledge and understanding are the foundation for all successful coping.

The "share and care" peer support group sessions led by MDDA-Boston members have offered and continues to offer an opportunity to serve, to receive, and make new friends.

My growth to meet the multiple challenges involved and the satisfaction and self-esteem in having played an important in the initial years of MDDA-Boston constitute the major accomplishment of my period of illness. Thus, the more I gave, the more I received.

After discontinuing Lithium and the recovery from my heart surgery, I found myself to be a new person. Coping with this involved an attitudinal change. It was obvious that I could not return to work in a meaningful manner because of my age and multiple infirmities. Thus I concluded that having had two careers, the first in chemistry and the second as a Lithium-blunted manic depressive, the time had come for me to regard myself as retired rather than disabled and to rebuild a new life on this basis.

Another attitudinal change that I have incorporated into my new life is my final recognition that it is vital that I adopt as stress-free a lifestyle as possible, avoiding temptations toward needless conflict or seeking minimum stress paths through challenges I must meet. This is a difficult task for one with a latent hypomanic temperament; however, the rewards have been considerable.

Learning has always been a source of satisfaction and joy in my life. I discovered that there is a relatively new focus on education for retired people. To my great good fortune I was accepted as a member of the Harvard University Institute for Learning in Retirement. In this institute the "study group leaders" are drawn from the members and for the most part we all constitute a body of contribution scholars rather than simply students. I find this to be a very satisfactory lifestyle, an opportunity for finding new friends of similar interests and one I can afford since the fees are modest. Programs similar to this are available throughout the nation.

An offshoot of these programs is the Elderhostel Program. They involve residing and taking courses at various institutions of higher learning throughout the country, usually for a week's duration. I have attended several of these programs and found them a wonderful balance of vacation and learning. My wife and I have also participated in Elderhostel International trips.

Yes, I did mention wife. After being alone for a number of years, I joined a "singles club." Pat was the Executive Director of Alternative House, a battered woman's shelter. She joined the "singles club" after three years of widowhood under the strong urging of her family and friends and with no desire of finding a new husband, but only to "get out" and find suitable new friends. However we found each other; fell in love and were married about a year after we met. Almost all of our adjustments to marriage have been made in the spirit of cooperation with each other's needs, concerns, and outlook, and in a spiral of growing love and respect for each other.

My days of living my life in the Lithium "marshmallow" have gratefully given way to sustained periods of cognitive and affective vitality. This is not to say that I don't experience periods of depression - I do. But those periods are more the exception than the rule. I have also discovered that I have been and remain the greatest partner in my recovery. It was through my persistent lobbying over many years that I convinced my treatment team that lithium was not only not helpful, but a direct inhibitor to my recovery. I am certainly not suggesting that lithium should be abandoned as a treatment of choice. But I am suggesting that an individual's response to medication is highly idiosyncratic. My recovery was forged not only with a change in medication, but with the voice I cultivated as I became my strongest advocate.

Robert Berman was the founder and first President of the Manic Depressive - Depressive Association of Boston.