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Category: Non-fiction

Helmut Dubiel

Tief im Hirn
[Deep within the brain]


It is not often the case that a book combines a personal experience report, sociological reflection and worldly wisdom, and conveys factual knowledge as succinctly as Helmut Dubiel's Deep within the Brain. Dubiel was diagnosed with Parkinson's disease at age 46. It is an illness that normally appears significantly later in life.

Helmut Dubiel was born in 1946 and studied German literature and philosophy at the universities of Bielefeld and Bochum. He has been a professor of sociology at the University of Giessen since 1992. His dissertation entitled "Wissenschaftsorganisation und politische Erfahrung" ("The Organization of Science and Political Experience") was published in 1978 and dealt with the Critical Theory of the Frankfurt School. Dubiel's intellectual socialization was shaped by the theory-laden atmosphere that prevailed in the Federal Republic in the late 1960s and 70s.

It actually comes as no surprise, therefore, that the author would adopt a critically distanced view, even in a text as personal as this portrayal of his own grave illness. Self-pity is nowhere to be found. He describes the course of his illness matter-of-factly, elevates individual aspects to an abstract level, and thereby draws conclusions from his individual experiences with friends and colleagues, with doctors and the disease, to more general trends and phenomena in society.

In addition to the tremor that is normally associated with the disease, typical symptoms include paralysis, dizziness and muscle rigidity which are caused by a dopamine deficiency in the brain. Parkinson's disease causes the death of the so-called "substantia nigra" which is responsible for the natural production of dopamine within the brain. Currently the disease remains incurable, but various - more or less effective - therapies do exist to alleviate the symptoms.

In his report Helmut Dubiel describes how at first he hid his condition for a time after receiving the diagnosis. He was ashamed and afraid that he could no longer measure up to the traditional image of a successful and self-assured academician at the height of his career. This led him to invest the greater part of his energies in camouflaging and masking his symptoms. He would soon realize, however, that he had neither the ability nor the desire to assume the directorship of a renowned sociological institute which had been earmarked for him. Matters he once considered important now appeared irrelevant because of his altered circumstances; the competitive atmosphere at the institute became repulsive. He accepted a guest lectureship at Berkeley and then taught for an additional three years at New York University. He learned that dealing with a fellow human being who suffers from an illness or a handicap is much more low key in California or New York than in Germany. He was able to mention his disease openly without having to fear discrimination, but also without arousing pity.

Although the time spent in New York was good - considering the circumstances - the author's symptoms were growing worse. After his return to Germany he decided to act on the advice of several doctors and undergo deep brain stimulation surgery. The procedure entails inserting electrodes deep within the brain through openings in the patient's skull, and then connecting them with a wire to a brain pacemaker that is implanted below the collarbone. The electrodes stimulate certain areas of the brain which are specifically targeted to control the constant diskinesia, but also to reduce the tremors, gait and posture disturbances, and the continual fluctuation of the patient's sense of well-being.

Initially, the operation was a complete success. Dubiel's motor coordination improved abruptly, producing a spontaneous reaction he describes as "euphoric." But only a short time elapsed before he began to suffer from major depression and speech disturbances. He was only able to speak very softly, could no longer find the right words, mumbled and stuttered. Concurrently, he experienced that after the "successful" operation many doctors rapidly lost interest in his case and advised him to reconcile himself with the sequelae. One neurologist, however, suggested that he "simply turn the stimulator off" and see how his body reacted. Dubiel tried it and - at the flick of a switch - his mental clarity returned, he was able to think and speak, and his depression simply vanished. At the same time, though, he began to experience motor disturbances and difficulty breathing. In short, he had a choice: he could either think or he could walk.

For Dubiel, experiencing himself under that kind of remote control and the sensation of being able to "turn off" a depression was nothing short of frivolous. Naturally, for the people in the patient's environment it is disconcerting when someone turns into an entirely different person at the push of a button. The possibility of regulating a person's emotional state of mind through technology to such a degree rocks our basic understanding of a human being as a unity of body and soul. A person who defines himself primarily in terms of his intellectual activities cannot avoid questioning the authenticity of his personality and the credibility of his feelings. At the same time the question arises whether in the future intellectual ability could possibly be generated through technology and thus made available commercially, and what consequences that might have.

One of this book's outstanding features is that it combines fundamental considerations of this kind with highly personal conclusions. Toward the end of the book the author reports that he has, in a sense, made peace with his brain pacemaker and uses it anyway he can. With the support of those closest to him he has learned to live with his illness. And he has also learned something else: one can never foresee all of the potential consequences of one's decisions, and in order to achieve happiness one must realize that much remains unknown and awaits discovery.

Translated by Philip Schmitz

Book cover Deep within the brain

By Heike Friesel