The emotional dynamics have changed over the years I’ve been dealing with my cognitive problems. Rewind to the summer of 2004. This was Craig and my first summer together in that shithole house in Skyway. Craig was heroic and made certain that we bought air conditioners and made several other modifications that helped keep the house cool. It was the first summer I’d had since I moved to Seattle in which I wasn’t lost in lethargy. Moreover, my mom helped me out with some money for the summer, so I didn’t have to work. It was the first time in a while when I wasn’t broken by exhaustion. But I bounced six checks. I’d always assumed my problem was being overwhelmed by fatigue. But I wasn’t hot and I wasn’t exhausted. I realized something else was wrong. So I started searching MS profiles. I read about short-term recall problems and realized that was my difficulty.
I consulted my neurologist and, by spring of 2005, I was in a cognitive symptoms support group organized by Mary Pepping, a neuropsych PhD at the UW hospital. The group wasn’t an MS group. It was a group of patients that were dealing with cognitive problems caused by things as diverse at traumatic brain injury and aneurisms. This was the first time that I realized that, yes, lesions in your brain count as brain damage. The group had a skills component and a therapy component. Because of school conflicts, I was only able to attend the skills component. I only got to go to the therapy group once.
The group I was part of happened to be all men, three of who really stand out in my memory. One was an elderly gentleman who had had a stroke. He was always cheerful and upbeat. I later found out that he had been comatose for six months after the stroke and in that period, his wife had passed away. She had been ill and he was not there to care for her during that time. I remain in awe of this man’s character. I cannot imagine waking up to discover that Craig had died of a debilitating illness and I had not been able to be there for him. That he could hold himself together with such composure still leaves me in awe. I can think of no other word to describe it. The second man’s disability had in essence left him in a constant state of sexual arousal. Many of us had read about this possible damage and said, "Hey that doesn’t sound so bad." I didn’t get to hear the man’s story, because he was only in the therapy group and I only got to go the once, but seeing the tears in the man’s eyes, I could see that no, this was a nightmare, not an adolescent fantasy. The last man was a construction worker who had been injured on the job. His damage was, I think, the most pronounced of all of us. He would, for example, wash dishes and then put them in the garbage can, instead of the cabinet. He would not realize that he had just thrown away his dishes.
At these sessions, I realized that one of my major problems was that, before I realized that I had a short-term recall problem, my response had been one of unconscious terror. This had been a major source of fatigue, as the most fatiguing stimulus I can feel is heavy, negative emotion. Carrying boxes up stairs is literally a good deal less fatiguing. Carrying boxes is cognitively simple. Before I consciously understood that I had a problem, I would feel terror five or six times a day. The most visceral memory I have of this was one day when I was looking for a paper in the many unstable stacks that, after the onset of MS, have plagued me. I found a library book that had been recalled. At that time, recalled library books were the bane of my existence, as I would rarely remember to bring them back if I could find where they were in the first place. The fines I paid at this time were quite expensive. Finding the book terrified me. If I picked up the book and put it somewhere where I would see it and remember to take it to school, would I remember to keep looking for the document that I needed? And if I kept looking for the document, would I later remember that I had found the recalled book and go back for it? I was fucked no matter which decision I made. The experience of the "Catch-22" was unbearable and totally overwhelming.
The terror was only able to remain terror so long as I was unconscious of the emotions and of the cognitive problem itself. The experience of terror had set in slowly and been part of my life for so many years that I never realized it was there. The difficulty is that of all non-moral failings, the one of which I had always been the most contemptuous since I was a child had always been disorganization. Having become this sort of contemptible person was deeply distressing to me. After I became conscious of the problem and understood the source, I could begin to consciously work on letting go of a value that was one of my core values. Unconscious terror gave way to conscious shame.
For about four years (say 2005-2008), my progress was made very slow by shame at being unable to live up to a core value. You can’t simply give up a core value just because you have no realistic way to live up to it. If you could just punt an ideal, it wouldn’t be a core value. Shame is a reflexive emotion. Evolutionary theory suggests that the reason we feel shame is that those individuals who confronted a situation in which they had exceeded their rightful identity claim in that situation tended to withdraw from it. This reflex aided individuals in social circumstances, as withdrawing often kept someone who was angry about the slight the person had committed from killing them. Shame can often lead to anger because it is a reflex. The thinking "You made me feel ashamed and made me withdraw. Because it’s a reflex, I couldn’t control it, so that makes me doubly angry, as I had no real reason to withdraw." Shame gives way to anger and then to violence.
The only way to stop feeling shame is to find a way to let go of the value. But letting go of the value is difficult because core values are a central part of identity. You were someone and now you can’t be that person. But you liked being that person. And now you’re some other fucker who you’d never sign up to be, some guy who has traits of which your old self would have been actively contemptuous. The only realistic way to let go of the dead guy’s values is to find things that you actually like about the new guy. You have to be willing to sign up to be yourself at the end of the day. You can’t live if you don’t.
So that’s taken the last year. I fuck up a lot now and I’m choking a lot less when it happens. I’ve accepted the fact that I’m a flake. I have other redeeming values. But like an onion, there’s always a new layer. I now have to deal with the emotion that created the Old Talal’s character in the first place. The Old Talal became an intense organizer because, dating back to my early childhood, the feeling over being overwhelmed was just about the thing I hated most. I hated feeling powerless. That’s why I became such a good organizer. I organized everything so that I would never feel overwhelmed again. And I was pretty effective, too. I might get overwhelmed in round one of a new activity, but I’d definitely organize to be ahead of the curve for round two. Not organizing was, in my view, a will to be weak. What could be more contemptible?
Apparently contempt is an emotion that I prized as a child and a young man. Clearly, I’ve had to learn the real nature of compassion the hard way. Kinder, gentler ways might not have broken through my character flaws.
I’ve learned a number of organizational methods that can help someone with my weird frontal lobe problems. Yet, I tend to desert them. So I’ve been paying close attention to how I feel. For example, in the early trip planning phase, I worked last spring with a speech therapist named Stacy. She taught me some planning techniques that were genuinely helpful. I created several lists of tasks using this method and got a lot done. My mom kicked in both the cash and the communications needed to land the apartment. I’ve needed to do another round. I should have repeated the technique, but I didn’t.
I’ve asked myself why and tried to pay attention to my emotions. I’ve realized that I dislike organizing because when I have an accurate picture of how many details I have to organize, I start feeling overwhelmed. Using the organization techniques, I have quantitative proof of the extent of the disability in the form of the list staring me in the face. By not organizing, I’m protecting my mind from the horror of really seeing just how daunting the once manageable world is for me now. I've learned to hide in the fog of my mind. The fog, the cause of my disgrace, now is my hiding place, my retreat from feeling disgrace. As someone who has always prided himself on looking at the world face on, this is a painful realization.
Plus, there is just procrastination to cope with as well. Not being able to simply crush entropy-related emotions, I not quite sure how to push past it. In fact, it probably won’t have a "pushing" aspect to it. That’s why I hate it. In pushing past, I felt freedom from constraint. I was Superman. I have to learn to like being Clark Kent.
I think I need to go back into therapy again. Well, I’m really late for the gym. Gotta go!