Monday, September 16, 2013


Fifteen years after diagnosis, I think I'm beginning to understand how recovery works after the "loss of self." One must first work one's way through the onion of denial with respect to the scope of the loss. This can be very difficult with cognitive damage because even the experts don't really understand the extent of the damage. It took my years to recognize that I cannot write complex pieces of work in a timely fashion, owing to how easily I get lost, due to the short-term recall problem. I was very attached to that skill. So much was this the case, I couldn't believe it was gone, because I couldn't imagine myself without it. This is the first difficulty.

Then, following the loss of the ability, one must mourn the loss of the values and ideals that one must relinquish as impractical. Simply put, one cannot live up to the value, owing to the loss of capacity. As these values were core parts of one's identity and one is, by definition, attached to that sense of self, one must mourn. One cannot lose a core value that one believed was a matter of choice without grief. True, there may be some solace in the fact that one cannot be accountable for doing something one is not able to do. That said, high-performance individuals frequently over-emphasize their individual agency to remain highly motivated. Accepting the reversal of this position causes a great deal of cognitive dissonance. Moreover, often society emphasizes the chosen aspect of the behavior with the exact same reasoning as individuals apply to their own behavior. Society wishes to motivate higher levels of discipline and repeatedly emphasizes it as a moral choice to expand its ability to discipline those it sees as failing to self-discipline. Society's desire to motivate the person does not disappear, as society is loathe to adapt to individual needs. The function of social norms is obviously to limit individual variance in favor of cooperation with a single pattern. But finally, in a sense, one has lost some of that divine spark of ability that makes us human, rather than an animal. This is extremely painful to acknowledge. Such a loss must be grieved, owing to depth of the humiliation involved.

One especially cannot contemptuously skip steps, scorning the process of grief as a waste of time, moving directly to acceptance. After all, in many cases, that capacity to use the will to "just skip it" is itself what has been lost. One must grieve, or one simply won't let go of the values, otherwise. This leads to a feedback loop, where one tries to move on, but fails, because one hasn't actually engaged the process of recovery fully. One keeps trying to recover the skill that was lost and, through that process, live up to the impractical value. The super-ego responds to these repeated failures by whipping the carcass of the dead horse. This creates a long-term loop of suffering. Because while one's skills and intelligence have become like a dead horse, one's soul still lives and feels the lash of the whip each time. This creates a mental state of crushing contempt for the self. We are not designed to live well in such a mental state.

Breaking the cycle leaves a person with what has proven, for me at least, to be a singularly difficult task. One must find something to like about what the disease has left you. If the disease has practically eviscerated very important values, this leaves one some rather slim pickings. One must truly learn to find value where you would not have found value under any other circumstances. You must dream up an identity that you would have dismissed before as being suboptimal and, then, find value in that life. Moreover you must learn not to mind that others find this task senseless, because they like you as you are and see nothing wrong with you. We all like people who we would never volunteer to be. That said, most would-be empathizers have never done this sort of thing before, and frankly, it's rather too abstruse for daily imagination. They're not going to get it. Finally, you must work hard every day to relinquish the old values and align yourself with values that develop what you can become with what's left. Who you were may have died, but that doesn't mean that there isn't a human being left who needs to find a way to live. You owe it to him to put grief aside and help him. It starts by finding a way to like him.