The Inward Empire
Christian Donlan becomes a father at the same time that he develops multiple sclerosis. The power of the book is his ability to express his feelings, especially about his disease. While his particular disease is MS, there are commonalities of symptoms and reactions to other, non-curable neurologic diseases. His reactions and his writing make the book an intriguing read. The following passages are those that I either found particularly interesting or I was struck by the communication.
An idea of where the illness stops and I begin is often problematic.
I would argue that neurological diseases are ultimately an attack on individuality.
“The Disembodied Lady” (a case description from Oliver Sacks) exists within the strange spook country of proprioception, the means – along with vision and the balance organs of the vestibular system – by which the body creates a sense of itself in space. Proprioception is a deeply physical business, and yet, it’s simultaneously a largely intangible one. It is not just the brain’s idea of where the body is from moment to moment. It is part of what makes a person’s physical experiences feel real and personal in the first place.
Proprioception is a guiding hand so deft and considerate that you might never come close to spotting it, and this is the tragedy of the body’s most elegant systems. You only learn how clever they are when the break – and when it becomes a matter of how clever they once were.
Proprioception was my introduction to the world of neurological disarray. I suspect that proprioception is an ideal introduction: a gentle indicator that there is always a level of mediation between the world and our experience of it.
It is hard to spot the things that happen when your brain starts to go wrong, because your brain is the last thing that is going to be able to tell you about it.
That is memory. Remembering something is an act of destruction, covered up by an almost instantaneous act of creation.
The problem for me was largely mechanical. The likely culprits were not the visual processing pathways leading to the occipital lobe, which houses the visual cortex, but rather the nerves that supply the muscles which operate the eyes like pulleys. My eyes were no longer perfectly aligned, and this meant that the images the visual cortex was trying to put together had ceased to overlap as cleanly as they usually did. My perceptions were becoming harder to mesh.
It is not that my eyes were exhausted. It’s more that there was an angry congestion building somewhere behind them, in the parts of the brain that had to deal with the chaos my eyes were suddenly delivering. So much trouble, and all this from a shift in one eye – a shift, most likely less that a millimeter. A shift so tiny that my eyeballs, viewed in the Ikea bathroom mirrors, seemed perfectly normal as they tracked up and down, from right to left.
Elsewhere, it seemed that my ability to deal with the subtext was diminished. In the evenings, or if I was particularly tired, I found that I could no longer peer beneath the surface of what people were saying as easily as I had before. I was stuck in the literal.
Some symptoms are part of what I feared at first and then forgot to fear – that MS could be such a wonderful, powerful all-purpose excuse I might invoke it a little too often.