I am a young man, slightly more than midway through his 20s, who is cognitively disabled. My working memory, the seemingly simple ability to attend to something and hold it in my mind long enough to think about it, was gone. It has now, fortunately, mostly returned, and that is the only reason I am able to write this diary now.
Even though I have only one more semester left of college, having gotten through the previous 7 semesters hobbled but still basically able to function, I have had to take the last 3 years of school.. The thing that precipitated this overlong withdrawal from the world was a dramatic and inexplicable worsening of my cognitive abilities. Most of that 3 years of time I simply do not remember at all.
What is the cause of this mysterious brain disease? What is the cause of my improvement? If you ask the very divided medical community these questions you will probably get some diverse, mutually contradictory, incomplete, and totally confused responses. Through all of this, my neurologist has pinned down this cognitive impairment as being caused by late neurological Lyme disease, or Lyme encephalopathy. I have tested positive for this disease since I was six years old, though it has only became a barrier to my cognitive functioning, and then an insurmountable one, since I was 18
It would be tempting at this point to talk about the politics of Lyme, but I don't want to. So many others here have diaried much more expertly than I can about that, having been in a sense away from the world for the past few years. I want to talk about what I learned from my experience with this terrible brain disease. I think, I know that I learned something valuable, and that I should share it with all of you.
Life in this encephalopathic state, a state of crippling depersonalization and diminished awareness without the luxury of working memory, is needless to say a peculiar condition. When I wasn’t in a hellish state of pain because of my inflamed brain fully engaged in what, my doctor said, is immunological warfare, I was in a timeless, spaceless, emotionless void without a care in the world. The most peculiar thing was that, even though I was not directly aware of the objects right in front of my nose, I had conversations, wrote, blogged, debated, and performed activities, having not experienced them directly. Even now I only faintly remember them. An important result of this, besides the very troubling and worrisome gap in my life narrative, is that, now that I am more much more awake, I know that most of the things I do even when I am well are completely automatic: my brain does them for me, before I am even aware of them, (If I ever do become aware of them, of course.) On top of the obvious things that I do more or less without thinking, that is, walking, sleeping, going to the bathroom, even getting something to eat, there is a great deal more that I do thinking that I consciously decided to do it but actually did not. In other words, even things that we think we do consciously are often unconscious. I provocatively include among these socializing, conversing, even our most routine, day to day work even when it is somewhat cognitively demanding.
I have concluded that the human mind, even when it is undiseased, is irrational more of the time than it is rational, and does more things unconsciously than consciously. It is stubborn; it likes regularity and routine; it falls into habits and addictions easily; it conforms to other's behaviors without even being aware of it; it resists new, valid evidence, especiallly when it contradicts old evidence; it lusts after the unattainable; and it has intense appetites for things that it consciously abhors. These tendencies and behaviors are often preconscious or unconscious; if you think you are exempt from them, it is only because you are not even aware when they happen to you, and I assure you they do. The end result: George Orwell was most certainly onto something when he wrote, "To see what is in front of one's nose needs a constant struggle." To think about how many factors are constantly working against your ability to notice and understand something, how many stimuli are filtered out of your sensory experience before it even arrives at your awareness, and most of all, how many things have to go right in this impossibly complex, organic, chemical machine we call the brain for you to simply be able to brush your teeth in the morning, the problem of existing becomes all the more daunting and terrifying, the problem of solving problems, of making each others’ lives and our selves better becomes overwhelming. That we do at all - we do and must - is something I now consider to be a miracle.
Here’s the preachy part, and something you probably think you don’t need to hear again but you do. I ask you folks, all of you, to be constantly engaged in this struggle of doing what in my depersonalized state I could not do, no matter how much effort I exerted: noticing what is right in front of your nose. Be always very mindful. If evidence comes before you, consider it. If it goes against your strongest opinions, consider it more. You may think that you're above the fray, that you are responsible for the preponderance of your own cognitions, but the truth is that you probably aren't, even if you are a completely normal, functional, sane and sober person. And the only way you can become more "responsible" and "reality-based" is to understand this uncomfortable fact, to learn and act in accordance with it.
And the one last thing: After all, these could be the insane ramblings of a diseased mind. Why do you have to believe me at all? You don’t. But even if you think I’m not a credible witness, I appeal to the force of common sense: is what I say above coherent at all? Did it ring true?