Parkinson's turbulence

I am directed to my seat, number 26G, by the doctors. The seat is cramped and uncomfortable but most aeroplane seats are. I am strapped in and I cannot move. It takes three months to taxi to the runway; eventually on diagnosis day, the three words "you have Parkinson's" triggers the engines, which pushes me back into the seat and moments later the plane lifts off the ground.

Once in the air the captain makes an announcement: "Ladies and Gentlemen, this is Parkinson's speaking. Welcome on board. If you would all like to turn and look at our newest passenger in seat 26G. Everyone say goodbye and hello to Jonathan! During the flight today, which lasts a lifetime, I hope you enjoy your personal physical and emotional turbulence..."

A Parkinson's flight has no known destination or escape but there is a guarantee of turbulence...

The relationship between Mind and Body in Parkinson's disease

Parkinson’s is taking away my ability to translate conscious thought into movements of my body. This has prompted me to ask: how much of me is lost when the communication between mind and body is defective? Am I my thoughts or my body? Am I lost when my body fails to respond?

Thoughts are objects in the world but they have a special status: they can signify experiences of objects in the world (e.g. the thought, “the sun is yellow” signifies an experience of the sun and not the object itself). Non-thought objects cannot signify experiences but they can be the subject of experiences. In other words, the transition from objects in themselves to an “object” in thought requires a thinker to experience and signify the object.

There is another type of signification of thought: when I think, “type this word” it signifies a complex set of muscle movements which direct my fingers to tap the keyboard; the thought “type this word” is a thought signified by consciousness as my thought and is also a signifier of bodily movement. The resulting movement is limited by the effectiveness of the thought and also the specific arrangement of bones, muscles and tendons etc in my body, whose arrangement was determined before I was born.

Therefore, thoughts can signify experiences and bodily movement; as such thoughts are free and also restricted; free to be whatever is possible as experience (within the limits of language and understanding) and restricted by the specific state of the body the thought finds itself in. My body limits the signification of thought as bodily movement but leaves intact thought as experience; this happens in both non-sufferers and sufferers of Parkinson’s, the limit is just deeper because of Parkinson’s.

Therefore, as I gradually lose control of my body I lose my identity as signifier of bodily movement but retain myself as a being who experiences the world.

The observer effect

Quantum physics says that particles exist in all possible states until they are observed. The presence of the observer renders all these possible states into one state, the observed one.

However, knowledge requires a knower and to know something you “observe” the object; knowledge of the object is based on something observed in the world, which is delivered through the senses to the brain. The brain structures the sense data into a knowable object. This suggests the knowledge that particles exist in all possible states was observed (otherwise how can it be known?). But to know all possible states an observer is needed but an observer only sees one state. Therefore, the proposition postulates something (observing all possible states) it then denies (observing only detects one possible state).

This fallacy is quite common. For example, you could think being told you have Parkinson’s somehow created the disease (or made it worse) in you: all possible states were rendered into the Parkinson's state when you became aware of the disease. But only knowledge of Parkinson’s was created in my mind when I was diagnosed. I had symptoms prior to the creation of the knowledge of Parkinson’s; so the observation had created nothing but knowledge.

This also applies to knowing the future; such knowledge is unknowable without observing the “future” in the present. But knowledge and observing are acts of thought and thoughts follow one another at intervals of fractions of a second. No thought can jump over the next thought and therefore we cannot skip our present thought to know the future. Also, this is why knowing all possible states is impossible: the thought “all possible states” misses all other possible thoughts and therefore fails to take into account “all possible states”.

Dealing with meaningless suffering

Nietzsche says that what causes anger and indignation is not suffering but the meaninglessness of suffering. We could endure our suffering if there was a reason for it; for example, the agony of childbirth is accepted (otherwise no woman would give birth!) because it allows new life to enter the world. However the majority of suffering in the world is not causally linked to some good.

To help us endure this world and its “veil of tears” we had to invent gods and an afterlife to find some sort of meaning. The presence of a god is to comfort those who suffer; for example, when something bad happens most people pray to a god, even though, at the very least, this god was passive when the bad thing happened; the desperate need to find meaning in suffering outweighs logic and reason.

The presence of Parkinson’s in my life and the suffering it causes is senseless. There is no reason for the fact I was thrown into the world with a susceptibility to Parkinson’s. I’m not to blame, nobody is to blame, no god is to blame, no thing is to blame; it just is. Looking for meaning when there is none makes suffering meaningless. Engaging with the search and setting up a reason that simply isn’t there leads you nowhere. It is immensely comforting to imagine a benevolent all powerful god or to blame the sufferer for their own suffering in original sin (and thus giving an illusionary sense of control). Yet these things are entirely illogical: god is seemingly without the benevolence or power to stop my suffering and how can you be guilty of original sin when you didn’t ask to be thrown into the world? This is breathing in bad air and coughing uncontrollably.

We all have the freedom and choice to disengage from a meaningless search and look for ways to be alongside our suffering. We also need to learn to live with not knowing the reasons why when there are none; instead focus on the how of suffering and what you can do about it.

What is it to be free?

We have no choice but to think; thinking occupies our every moment and is characterized by our ability to think different thoughts. This forms the essential freedom to think at least one more thought. How do we use our freedom? This is the crucial question facing us all; the curse of consciousness allows us to ask, what should we do next?

Our freedom is not absolute; we cannot change our thrownness (i.e. the state in which we exist) because the process of being thrown into the world has finished for us (we are in the world so we cannot influence how we came into the world); thus, you cannot change the nature of a cake once it is baked; you can add ice cream to it but we are fundamentally already who we are. This means that I cannot change my susceptibility to Parkinson's.

Therefore, our limitations limit our absolute freedom; but within the boundaries created by thrownness there is space and freedom to explore; thrownness builds a house with a limited number of rooms that we must inhabit but we are free to wander around the house. The vehicle for this exploration is thinking one more thought; the structure of thought may be limited but thought can accommodate many different varieties of thinking. Part of my thrown limitations is my Parkinson's but I have the choice of what my next thought concerning my disease will be. I can be told by Parkinson's to stand still or I can resist and try to move both physically and emotionally. This choice is my freedom...