The Struggling of Self-Determination

Sacks (1999) describes encephalitis lethargica as a sleeping-sickness disease that killed five million people during the epidemic from 1916 to 1926 all over the world. It appeared mysteriously from nowhere. Some researches consider it as the aftermath of the Spanish flue. This disease attacks brain and nerve cells, but it necessary to understand that patients are not brain dead. They are still very intelligent and smart people. They are just imprisoned in themselves for decades. Different patients have different symptoms. For example, sleepiness, personality changes, tics and stiffness as well as totally lacking of emotions, feelings and desires. Post-encephalitic syndrome appears years later after the attack of encephalitic letargica. Patients can have the same symptoms as in encephalitic lethargica or can have different ones. Some of the symptoms are stiffness, sweaty, tics, respiratory crisis, festinatia and many others.  Symptoms can remit and disappear, stay for years or lead to the rapid death. This illness has no one pattern, but, in fact, it is very unpredictable. Every patient can tell his or her own experience and all these stories won’t be the same.

Moreover, patients’ stories and experiences are the part of themselves. In other words these are what formed their self-identity. However, in Sacks encephalitic lethargica, post-encephalitic syndrome and the L-DOPA treatment made his patients feel as if they were losing their “sense of ‘self'” (p.54). By this term, Sacks means self-define – who they are and who they were, feelings and emotions, and whether or not the internal person matches the external one.

First of all, a person is always asking him or herself “who am I?”. Sacks’s patients also asked themselves who they were and who they became. Frances D. was very successful in her life. She had a career as a legal secretary and was very active woman in social and civil affairs until the illness attacked her (p.40). She used to have a fully control over her life, but becoming ill, she described her life as “[…] I cannot start and I cannot stop. Either I am held still, or I am forces to accelerate. I no longer seem to have any in-between states” (as citied in Sacks, p.40). Frances was not already the same as she was before the disease. She was out of control of her life.  Hester Y. also wrote in her diary “I’m fifty-five, bent double…a cripple… a hag… I used to be pretty, Dr. Sacks; you’d never believe it now… I’ve lost my husband and son […] I’ve been asleep for twenty years and grown old in my sleep” (as citied in Sacks, p.104-105). This terrible disease had stolen their identity, their sense of “self”. They both understood that they were not the same as they were in the best time of their lives, in the time when they were beautiful and successful. This disease also had stolen the families that were also a part of who they were. But some patients had no even chances to develop their identity as it happened with Rolando P. who was struck with encephalitic lethargica at the age of 30 months old. “I’ve been shut up in illness since the day I was born… That’s a hell of a life for someone to have… Why the hell couldn’t I have died as a kid?” (as citied in Sacks, p.125). Patients with stolen sense of “self” wanted to end their lives with suicide or just die by themselves of despair and hopelessness.

Second, the sense of “self” is about feelings and emotions, because they also form people’s identity. Some patients were emotionless even when someone tried to be intolerable to them. This disastrous disease thieved all of emotions from Magda. She had only feelings by apathy and indifference. Nothing concerned her. It seemed that she was incapable of emotional reaction:

I ceased to have any moods, I ceased to care about anything. Nothing moved me – not even the death of my parents. I forgot what it felt like to be happy or unhappy. Was it good or bad? It was neither. It was nothing (as citied in Sacks, p. 71).

Other people, being peaceful and emotionally equable before the disease, became very restless and irritable after that. For example, Mr. O faced with frequent mood-swings. He could either fall into depression or exultant mood (p. 88).

After taking L-DOPA, patients first felt very delighted and inspired. They could finally express their emotions through laugh and tears decades later.  Leonardo described his first L-DOPA experience as “I feel like a man in love. I have broken thorough the barriers which cut me off from love” (as citied in Sacks, p. 209). It seemed that L-DOPA was like a solving of all the problems; it was the drug that was able to return the patients back to the real life, to the sense of “self”, to the emotions that they hadn’t have for years. The evidence for that is the speech of Hester:

I’m a new person, I feel it, I feel it inside, I’m a brand new person. I feel so much, I can’t tell you what I feel. Everything’s changed, it’s going to be a new life now… […] I would like to express my feelings fully. It is so long since I had any feelings. I can’t find the words for my feelings. I would like to have a dictionary to find words for my feelings… (as cited in Sacks, p. 101-102).

But, unfortunately, this inspirational period didn’t last long in most cases. After exultant mood, patients lost their feelings of peace and calm. L-DOPA exploded their emotions in a bad way.  Frances depicted her emotional state as:

That’s it! You’ve thrown-out the whole pharmacy at me. I’ve been up, down, sideways, inside-out, and everything else. I’ve been pushed, pulled, squeezed, and twisted. I’ve gone faster, and slower, as well as so fast I actually stayed in one place. And I keep opening up and closing down, like a human concertina…” (as citied in Sacks, p. 61).

As a result some patients asked the doctor to stop the course of L-DOPA, because they felt that it was better for them to stay alone, imprisoned in themselves (as citied in Sacks, p. 219).

In opposition to Frances, Mrs. Y. adapted herself to these reactions to L-DOPA. She successfully piloted herself “through physiological storms of an incredible ferocity and unpredictability” (p. 107).

The most significant component of sense of “self” is whether or not the internal person matches the external one. After awakening patients found out that they became 20-40 years older compared to what they remembered about themselves. Rose R. said, “I know it’s ’69, I know I’m 64 – but I feel it’s ’26, I feel I’m 21” (as citied in Sacks, p. 83). All patients reacted differently on the fact that they are much older than they were before. Some accepted this fact quite easily, some didn’t. “But she is a Sleeping Beauty whose ‘awakening’ was unbearable to her, and who will never be awoken again” (p.87). As it was mentioned above, Hester’s internal person didn’t match the external one too. She remembered herself beautiful and pretty, but she understood that she was not the same anymore at her 55 (as citied in Sacks, p.104-105).

To sum up all above, all patients in spite of the fact that their brain and nerve cells were affected by the disease were very intelligent. Some were good in reading, some were good in writing, crocheting, doing crosswords and in many other things. Undoubtedly, this illness stole the part of their sense of “self” in three different aspects of it: in self-defining, in feelings and emotions, and in matching the internal person to the external one. But still they were the personalities with the strong characters.

Author: Ekaterina Nikitina


Sacks, O. (1999). Awekenings. New York, NY: Vintage.