Phenomenological Study of Brain Fog from Lyme Disease

Cognitive dysfunction, known colloquially as brain fog, is a common symptom of chronic Lyme disease. Not all of those with Lyme experience neurological symptoms, but for those who do, they are often amongst the most challenging to deal with psychologically. Brain fog is an apt name for the phenomenon; it feels as though there is a kind of film or haze over the world. Other people, ideas, and actual objects aren't readily accessible, there is a distance from everything. Life is obscured by a haziness that prevents a full immersion into it. This haziness prevents the world from fully reaching you and prevents you from fully reaching it, it feels like a screen is separating you from life. It is something that is impossible to ignore, it is an immovable filter over experience.

Almost everyone, whether or not they suffer from chronic illness, feels brain fog at some point in their life. It is the feeling of being “out of it” “fuzzy” and unable to focus, think, or communicate. It makes reading and  conversation very difficult and it is a main driver in people leaving their jobs and schooling due to Lyme disease. Most noticeably, brain fog affects one's ability to form words, whether it is for the purpose of conversation, writing, or even an internal dialogue. This fundamentally disrupts and shifts the mode of existence for a person. It robs one of their ability to fully utilize words, to apprehend the ideas and lives of others, and to spread their ideas into the world. This is an isolating and frustrating feeling. There is an intrinsic desire in each of us to see our thoughts incarnated in the world and this process relies heavily on an unhindered ability to utilize and comprehend speech.

In Phenomenology of Perception, Maurice Merleau-Ponty rejects prior intellectual and mechanistic conceptions of language. These schools of thought, in different ways, take language and the things they express to be distinct. They have no problem partitioning language from the things that it is “representing.” Things happen in the world and then they are translated into language. In this way, expression with language and thought are only accidentally related and can be made distinct. Ponty posits a much more dynamic relationship between thought and language. He suggests that thought has as its natural end in expression; thoughts strive to be made words. We are rarely satisfied to leave the seeds of thought undeveloped, there is an impulse to carry it through to fruition. For this, we must utilize language, our means of expressing thought. This action is not a formality though and it is not separable from the thought itself. It is an essential part of the process of thinking.

As the experience of speaking tells us, when we are in a natural situation, thinking and speaking are one in the same. Ponty describes the experience of delivering monologue:

“...we do not have a thought on the margins of the text itself. The words occupy our entire mind, they come to fulfill our expectation exactly, and we experience the necessity of the speech, but we would not have been capable of predicting it, and we are possessed by it.”  

We go into a sort of trance, words sprout from our thoughts before us, we live inside of this process but it almost feels effortless. This phenomenon exposes speech as something more than a mere sign. There is no deciphering required for it to impact us, it carries sense with it inherently. If words were merely a way of preserving and putting into the world a thought, then we would never seek to translate a private thought into words. We do not write and talk to ourselves for the sole purpose of remembering things, this is an essential part of thought itself.  When we write, a thought is not just recorded, it is completed and transformed, “it brings it to life in a new organism of words, it instills this signification in the writer or the reader like a new sense organ, and it opens a new field or a new dimension to our experience” (223). Talking, listening, and writing endow our thoughts with an essential vibrancy and life that simply could not exist without them. Words are an essential component of a completed and meaningful thought.

Not only is language an important component of thinking, but it is absolutely critical for communication. According to Ponty, “speech alone is capable of sedimenting and of constituting an intersubjective acquisition” (231). Speech is our way of acknowledging to each other that we live in the same world and have a desire to share our experiences. When there is an impediment in our ability to speak, there is a loss of “intersubjective acquisition.” Our ability to deeply interact with others in a way that is satisfying is destroyed.

Language is not only integral for communication and thought, but it is largely responsible for our ability to classify objects in the world in our experience. Words are not simply associated with certain images or ideas, but they are pregnant with a sense. This sense is responsible for the experience of consuming them. They do not simply redirect us to a distinct thought, they contain in themselves and directly present us with a sense, a feeling. Without these senses, words become noises. Consistent exposure to words and their senses begins to inform and affect our perception of the world. It allows us to better classify and see rich variety in the experience of our sensory input. Ponty discusses patients suffering from aphasia, an inability to understand or express speech due to brain damage. Certain patients will lose only the ability to discuss or understand a particular thing, for example color. These patients are unable to understand language as it pertains to color. This does not only affect their ability to indicate the color of something verbally, it affects their very perception of the thing. They may still be able to vaguely perceive different shades of color, but these differences are less meaningful. The practice of calling different shades different names in turn influences our perception to be more perceptive. We begin to “see” the world as more nuanced as we think and express it as such. In elementary school, when the various types of clouds are taught (cumulus, stratus, etc.) everyone goes to recess and looks up in the sky. All of a sudden, the differences between the clouds seem more interesting and stark. If this same child looked at the clouds the previous day, he could have certainly had the impression of some variety among them but, it is not until this variety is given distinct names in the following day’s lesson that the sky really comes to life. This example shows how words can enhance perception, particularly in our ability to classify objects. It sharpens our ability to make distinctions between things that previously seemed only vaguely distinguishable.

Brain fog most notably impacts a person's ability to communicate with words. If it were the case that forming words was a process entirely distinct from forming thoughts, this would be a less devastating disability. As Ponty explains, expressing with words is essential in the coming to fruition of thought. When one is unable to fully carry a thought through into word, there is a sense of dissatisfaction and incompleteness. This has its roots in the natural tendency thoughts have towards being expressed. In this state, the inner life of ideas are incomplete and unclear. There is a sense of confusion and disconnection that pervades all of life. Like with the loss of temporal freedom, there are many situations in which people may come to face this unpleasant situation.  Writer’s block is an affliction almost everyone experiences at some time in some form. It is the experience of being unable to conjure new work. This experience is not like having difficulty translating words from one language to another, as would be the case if creating language was a mere translation of thought. Instead, it feels like an inability to make the mind go to new places. The person feels stuck where they are in the world. Speaking of her debilitating writer’s block the author Phyllis Koestenbaum wrote, “I needed to write to feel, but without feeling I couldn’t write.” Koestenbaum highlights the important relationship between living and expression through words. When thoughts are stifled and prevented from blooming into words, feeling and experience is shortchanged. This situation deprives one of seeing the potential of their thoughts realized in the world. This is a serious, disturbing, and frustrating imbalance.

It is hard to argue with Ponty’s assertion that speech and communication are deeply related. Speech is our main tool with which we relate to those around us. It is only through a proper utilization and apprehension of speech that we may freely exchange parts of ourselves with those around us. Ponty describes the experience of discussion as a kind of trance. When we are fully absorbed and engaged, there is no side thought occurring, our minds are empty, filled entirely with the senses of the words we are exchanging. This intensifies conversation, instead of it being a activity of attempting to accurately convey our thoughts and understand the thoughts of others, it is a situation where minds merge. The thoughts of the participants mix and transform themselves in language. This account explains the deeply satisfying nature of an engaging conversation. It also explains how access to conversations of this type depend entirely on an intact ability to express oneself with language. With brain fog, this can seem impossible. This helps to explain the depressing feeling of disconnection that so many people experience with brain fog. It robs one of their usual ability to connect their minds to others, sentencing them to remain in their own. This affliction can at times feel like imprisonment, like being trapped in your own head. With this feeling comes all the same psychological challenges that face someone who literally is imprisoned in such a way that they cannot communicate - i.e. solitary confinement. This is one of the most important ways that chronic Lyme disease can impact the experience of life for someone that suffers from it. This being the case, it should be an absolute priority for any treatment plan to alleviate this effect of the disease. Normally, brain fog is seen as an unfortunate symptom that will hopefully subside if and when the bacteria is eliminated. This is an inappropriate attitude towards it given its ability to completely alter experience and prevent a normal and healthy discourse with oneself, others, and the world at large.