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

Reference

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

Positive Deviants and Their Medical Contributions

Gawande (2007) shows the relations between doctors and patients as well as the medicine behind the scene; it is like a separate world that is unseen to a regular person. In this world the doctor does his best to make the patient feel better, to prescribe a better medication, to become a good doctor and even better. This word “better” is going through the book from the beginning up to the end. Gawande identifies three topics: “Diligence”, “Doing Right”, and “Ingenuity”. He tells the readers about the importance of simple health care procedures like washing hands in order to drop in the epidemic rate in the hospitals, about the doctors who worked on mopping-up the polio among the Indian population, and about those who strived to save the lives of American soldiers in Iraq. Comfort level for the patients and cultural requirements are also discussed as well as insurance systems and service pricelists. The most significant problems that are mentioned by Gawande are the suing the doctors for their malpractices, and whether or not doctors should participate in executions by lethal injection. At the end the readers can learn more about how become a good doctor, how accept the failures, reflect on failures and find new solutions – even through creativity – to avoid these failures in the future.

Gawande hit upon a very important idea that “But making medicine go right is less often like making a difficult diagnosis than like making sure everyone washes their hands” (p.21). By this statement Gawande means that often people think that medicine is only about diagnosis, but in fact the health of an every single person is consists of thousands of steps, such as following health care rules, fighting till the end, and being creative.

First of all, following health care rules can prevent serious illnesses and diseases. According to Gawande, “Bacterial counts on the hands range from five thousand to five million colony-forming units per square centimeter. […]. The worst place is under the fingernails” (p.17). Doctors examine a lot of patients each day and if they don’t wash their hands, don’t use sterile gloves and don’t sterilize the instruments, they can easily communicate infection from one patient to another. Gawande acknowledges his possible mistakes in this passage:

Until that moment, when I stood there looking at the sign on his door, it had not occurred to me that I might have given him that infection. But the truth is I may have. One of us certainly did (p. 28).

Due to doctors either are lazy to follow hand hygiene rules or just forget about them, millions of patients are infected in the hospitals and as a result many of them die. Such doctors and nurses can be easily sued for malpractice. However, they all should understand that this simple step of washing hands can save a lot of lives and drop in the epidemic rate in the hospitals. Thus, lives of millions of patients are literally in the doctors’ hands.

Another instance of following the health care rules to avoid serious diseases is to be vaccinated when you should to be. When the epidemic breaks out, scientists do their best to find the vaccine for this or that disease.  Gawande gives us an example of polio – the disease that strikes children under age five in India (p. 35).  A huge campaign for polio immunization was launched there. Thousands of vaccinators went from house to house to inoculate children. It was up to parents whether or not do this vaccination to their children. But they had to understand that this simple process of immunization could save the life of their children and stop the spreading of the disease. Unfortunately, not all people realized that and as a result a lot of children became paralyzed because of not taking the drop. Gawande describes the conversation between mother and the doctor:

The mother said that a health worker had come around with polio drops a few weeks before her daughter became sick. But she had heard from other villagers that children were getting fevers from the drops. So she refused the vaccination. A look of profound sadness now swept over her (p. 50).

In that way, it is very important to follow health care rules, because these are what help people to stay healthy, prevent diseases and avoid terrible results, such as death.

Still another example of thousands of small steps that make the path to the success is fight till the end. Due to the progress in medicine, there are big chances for soldiers to survive after getting injuries during the war such as gunshot wounds to the stomach, liver, chest and others. One of the main important things is whether or not doctors start the treatment on time and whether or not they fight till the end to save the soldiers’ lives. In the war every minute and even every second has its own value. That’s why time is one of the cruelest things during the war. Colonel Ronald Bellamy claimed, “Civilian surgeons talk of having a “Golden Hour” during which most trauma victims can be saved”. But there are also “Golden Five Minutes” for soldiers with blood loss (as citied in Gawande, p. 57). If during these minutes the urgent treatment has started, probably, the soldiers would live. Moreover, it is also important what kind of treatment is provided and whether or not doctors put their whole soul, all their desires to save the soldiers. Life is priceless, that’s why doctors have to do their best to pull soldiers out of the death.

People also ask doctors very often questions like “Should they put her through yet more of this? Or should they take her home and let her die?” But where is the border between what doctors can do and what they can’t do (p. 159)? According to Gawande, “the truth is we want doctors who fight” (p. 159). “Even when we don’t know that a patient can be completely normal and healthy, we want doctors to fight” (p. 160).  Such a great responsibility lies with doctors. They should definitely fight. Only this kind of behavior can lead the doctors to the success, even if they were not able to save someone’s life. We never know what the last attempt can do. Maybe the last desperate attempt can lead the patient to the recovery. That’s why it is so important to fight till the very end, especially when the patients, their friends and relatives believe in doctors’ help so much.

The most significant example of how thousands of small steps make the path to the success is doctors’ ingenuity. Ingenuity is not less important than doctors’ skills and professionalism. Only due to all these things together, these simple steps, doctors can be successful in what they do. “Nonetheless, what I saw was: better is possible. It does not take genius. It takes diligence. It takes moral clarity. It takes ingenuity. And above all, it takes a willingness to try” (p. 246). Doctors don’t have to be afraid of being creative and should give a try to something they have invented, even if it seems so simple and primitive. Who knows maybe exactly this innovation will improve the quality of the medicine and will help to save people’s lives. Gawande gives us an example of this kind of simple idea. It is a measurement of a newborn’s physical condition that was invented by Virginia Apgar – the first woman who was admitted to the surgical residency at Columbia University College of Physicians and Surgeons (p.185). “The Apgar Score, as it became universally known, allowed nurses to rate the condition of babies at birth on a scale from zero to ten” (p. 187). This innovation amazed doctors. It allowed them to give an immediate feedback to what they did. According to Gawande “The score also changed the choices they made about how to do better” (p. 190).

To sum up all above, Gawande considers that the ultimate success consists not only of difficult diagnosis, but it is the result of cooperation between doctors and patients. Moreover thousands of steps are essential to the way to the success. Following health care tips, fighting up to the end and doctors’ ingenuity these are what can save millions of lives and lead to the doctors’ professional triumph. However, not only in the medical field these steps are very important. Our whole life should be based on single steps that will lead us to the height of our success.

Author: Ekaterina Nikitina

Reference

Gawande, A. (2007). Better: A surgeon’s notes on performance. New York: Picador.