Recovery

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.

Writing Is Now Baseball

Part of writing now is learning to accept that I can't simply impose order on this damned mess in a single, bold stroke the way I did a decade ago (can I have been sick that long?). I need to be patient (I hate that pun) while I plod my way toward coherence. It makes me sick, but that's how this works now and nothing will change it. Writing is a slow boring of hard boards needing passion and perspective. The charismatic version of this was way more fun.

Baseball. Writing is baseball. It's about grinding it out patiently across the long season.

I Finally Get It

The brain damage has left me with three core problems:

1. I have difficulty sorting because I have trouble holding multiple items in my brain at one time and manipulating them. I suck at filing.
   
   
2. I have difficulty suppressing intense emotion. This was apparently something I used to be able to do very selectively.
   
   
3. I suffer from chronic fatigue that’s akin to living like someone in their sixties or seventies. Moreover both sorting and dealing with strong emotion are the things that greatly exacerbate this fatigue. This probably has to do with "rewiring" the brain does to get around the damage. Ironically, moving heavy boxes is less fatiguing for me now than filing or cleaning. Anything is less fatiguing than intense emotion.
   

The first two skills are the foundation of all disciplined work. Having the last defect sure doesn’t help get my job done.

When I’m thinking up new ideas, I get emotionally overstimulated. The stuff I dream up excites me a great deal. Talal Amin described the charismatic inspiration of shamen and artists this way:

Johann Sulzer, a theorist of the fine arts, wrote in more general terms: “All artists of any genius claim that from time to time they experience a state of extraordinary psychic intensity which makes work unusually easy, images arising without great effort and the best ideas flowing in such profusion as if they were the gift of some higher power. This is without doubt what is called inspiration. If an artist experiences this condition, his object appears to him in an unusual light; his genius, as if guided by a divine power, invents without effort, shaping his invention in the most suitable form without strain; the finest ideas and images occur unbidden in floods to the inspired poet; the orator judges with the greatest acumen, feels with the greatest intensity, and the strongest and most vividly expressive words rise to his tongue.” Such statements, Flaherty argues, are strongly reminiscent of accounts of shamanism—in this case of a shaman described not skeptically but in wonderment. They employ the idea of inspiration metaphorically—as control of an “instrument” from outside the person, or as a “gift” from a “higher power.” But these remain metaphors, covering an inability to explain a this-worldly phenomenon in natural terms.

Sorting through the flood of inspired ideas pouring into my skull and rapidly organizing them would be difficult enough in my state. I can't rapidly organize anything anymore. But feeling that intense passion, literally ecstasy, makes it even more difficult for me to sort. I overheat emotionally and have to slow down and process more slowly. Moreover, I don’t really feel ecstasy anymore. I feel panic. I feel a very strong reflexive immediacy to write, as if slowing the thinking down will makes me forget the connections my imagination has made between objects. To some extent that is actually true. There are ideas that one might not imagine again if one doesn’t latch on to them immediately. So what was once ecstasy is now pure choking.

Nonetheless, slowing down and handling the flood of inspiration through patient note-taking about what I’m imagining over several passes over months is a viable way of handling this. Once I detach emotionally from what I've imagined (which takes a few weeks), I can sort through the mad intuitive drivel for the real gems. It’s slow, but I do eventually “get there.” I can still do this work.

But I nonetheless can’t absorb the input from my imagination rapidly enough to proceed the way I used to before. That ecstatic, charismatic feeling of “channeling divine inspiration” is something I’m never going to feel again. I will never be able to sort rapidly enough to select which relationships to accept and which to reject as inspiration floods my brain, let alone handle the flood of emotion this creates. The emotion exhausts me well before I can achieve the sorting task. That is what the disability has cost me.

But using my brain to rapidly sort the deluge of inspiration that would flood my mind was the work process with which I most identified myself. Losing this gift has entailed losing what I valued most about myself as a person. I don’t need to mourn it anymore, because I’ve been mourning it for years now. But finally being able to articulate it has finally allowed me to let it go and move forward.

An Anatomy of Denial

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!

A Problem of Inspiration

This passage in Talal Amin’s essay “What Might an Anthropology of Secularism Look Like?” triggered a visceral emotional response in me:

Johann Sulzer, a theorist of the fine arts, wrote in more general terms: “All artists of any genius claim that from time to time they experience a state of extraordinary psychic intensity which makes work unusually easy, images arising without great effort and the best ideas flowing in such profusion as if they were the gift of some higher power. This is without doubt what is called inspiration. If an artist experiences this condition, his object appears to him in an unusual light; his genius, as if guided by a divine power, invents without effort, shaping his invention in the most suitable form without strain; the finest ideas and images occur unbidden in floods to the inspired poet; the orator judges with the greatest acumen, feels with the greatest intensity, and the strongest and most vividly expressive words rise to his tongue.” Such statements, Flaherty argues, are strongly reminiscent of accounts of shamanism—in this case of a shaman described not skeptically but in wonderment. They employ the idea of inspiration metaphorically—as control of an “instrument” from outside the person, or as a “gift” from a “higher power.” But these remain metaphors, covering an inability to explain a this-worldly phenomenon in natural terms.

My problem after multiple sclerosis is that I cannot have this experience as a writer. The experience of exaltation when one is flooded by imagination and converts that imagination into a structured, final product was my primary motivation to work. Charisma is the experience of exercising transformative, creative power. You have to see transformation and creativity in real time for it to be charisma.

The difficulty is not that I cannot be flooded with imagination anymore. That will still happen all the time if I don’t work to control it. The problem is that my organizational skills have been so badly compromised by the brain damage that I can’t keep up with an intense flow of imagination. I can’t organize the flood of images quickly enough to experience imagination as a high, because the high is the product not only of pseudo-religious awe at the flow of images flooding one’s consciousness, but also of mental power in processing it all. Instead, the result is distress. I’m still flooded with sight, but I can’t shape it effectively. Trying to do it in real time, I write disasters like the damned Lebanon paper.

The obvious solution is to let in less at a time and developing means of putting the pieces together slowly. The problem isn’t that the processor is bad (low intelligence) or the hard drive is bad (compromised long term memory problems, like Alzheimers), but that I’m running on too little memory (short-term recall problems) and simply can’t keep and manage all the images flooding into my conscious mind all at once.

The problem is that working on turning imagination into theory bit by bit just isn’t a high. Remember, I have to see the creative transformation in real time, i.e. “right before my eyes,” to experience that exalted high. If creative transformation happens incrementally, there’s no euphoria at all.

Is it any wonder I’m not getting anywhere?

	Teaching	Writing
Financial incentives	Regular if scanty pay at regular intervals when I teach.	The vague possibility of gainful employment without regular pay interruptions that seems to recede into an impossible to attain future.
Time constraints	Structured allotments (the course meets at regular times) with immediate selective incentives that force efficient use of off-schedule time (if I walk in unprepared I die of embarrassment). Top prioritization because I must teach to receive an income.	Chronic fatigue greatly reduces my “off schedule” time outside teaching and real life (funerals, doctor’s appointments, family crises, etc.) eats away at this time. Writing is consistently interrupted.
Pleasure in the work	Immediate high of watching the students experience new ideas they’ve never experienced before.	Slow boring of hard boards. Perspective erodes passion. Lack of self-confidence, as I can’t see the results happen in “real time.”

Fog

There I was thinking I made up the term. Other MS patients refer to their cognitive problems as “fog” as well! Who knew?

Divine Economy

The art in being truly human is living with a consciousness that we are neither animal nor god, but live constantly on the frontier between the two. It is difficult to live without savagery or hubris, but learning to do so is the soul of what makes being human a beautiful thing. Keeping this awareness has been difficult for me. I have always cast my eyes toward the heavens. I need reminders that I am creature.

A human emulates God’s power most clearly in our feats of discipline. It is discipline that creates power and discipline that confers identity. Discipline is the wellspring of our God-given gift of naming. It is in my capacity to be disciplined that my subjectivity has been damaged. I used to believe that choosing not to be disciplined was willing to not be like God, nothing more than the contemptible will to be animal, a prisoner of the senses. I would never have chosen this.

Such is God’s economy that, in my curious illness, I have all that I need to remember. I will never be disciplined again, at least nothing on the same order. This for me is essentially the same thing. Unlike the animal that was never meant to be self-disciplined and could never understand this, I understand fully what is entailed in this loss. I also understand what I have gained because of this loss.

It is hard to understand how something can be both so bitter and so sweet. Such is the economy of God.

Giving Up That One Heroic Death

The coward dies a thousand deaths; the brave man dies but once. It’s a nice little saying as far as it goes, but it in no way constitutes a necessary and sufficient cause for the dying of a thousand deaths. Brain damage does this same thing. There are level upon level of loss, as you discover just how pernicious the damage is. I keep wanting to heroically get it over with, die the one death and move on—become the new person. I don’t have a choice, so why waste time on all the emotions?

But the whole thing is like algebra. You can’t skip steps. You’ll just get it wrong and have to go back and do it over again. And I can’t treat it like algebra. If you pull a C in algebra and get through the course, you’re done and don’t have to revisit it until it’s time to take the GRE. But God is a more thorough teacher than the school system. He makes you go over it again and again until you finally get it. There is no gentleman’s C. The course is pass-fail with a very high standard for passing indeed.

I’ve looked enough at skills to realize that devising organizational techniques to compensate for my shortcomings is no longer my major problem. I still fuck up badly, but it’s not because I don’t have a method. I think I’ve learned most of the skills that I need to compensate for the damage. I’m still fucking up because I can’t manage all the emotions involved.

There are three recurring emotions that I cope with whenever I deal with medium to large organizing tasks. These are: shame, inadequacy and despair. These three are a direct cause of my pronounced tendency to withdraw from or delay organizing tasks. As the intense negative emotion generates fatigue, experiencing these three emotions generate the fourth direct cause of withdrawal and delay.

I don’t have the ability to suppress the emotions anymore. So that’s off the table. I need more therapy, prayer and meditation. I need to learn to be okay with my situation so that I’m not ashamed, overwhelmed and despairing anymore. Being brave, in this case, means dying the thousand deaths. It also means my progress is going to be really slow.

Slow but steady wins the race. Fuckin’ tortoise.

Strategic Epiphany

Okay, I think I’m beginning to see a new level to learning to prepare applications again. My problem has been that I am focused on preparing a successful round. I want to get out about 6-8 applications, because the more shots you take, the better your success rate is likely to be. That’s stupid.

I have been aware of two immediate problems: First, my new learning speed has been compromised by the disease. I don’t calculate permutations nearly as quickly and as effectively as I used to. I used to subconsciously make the calculations in my head. Well, my short term recall deficit prevents me from making effective decision trees in my head. The only way I can deal now is to physically make a decision tree so that I don’t have to try to keep the diagram in my head while I think about it.

Second, all human beings make decisions on the basis of emotion, not reason. What a rational process is supposed to do is help you figure out which conflicting emotion to suppress. Reason (going step by step through the decision tree) doesn’t make the decision for us, even if those of us who can deploy this strategy quickly feel as if it does. Reasoned analysis simply changes how you feel about the decision you are making in a useful way. But if I feel very strongly about the wrong decision, I can’t suppress the need to decide that way anymore, because I can’t suppress strong emotions outright anymore. Going through the decision tree, even if it’s written down, isn’t necessarily helpful because I can’t suppress strong rival emotions effectively. I make bad decisions and I know they are bad decisions, but often, until the emotional dilemma is resolved somehow, I still make the bad decision knowing the decision is bad because I can’t help myself.

This morning, I am aware of a third problem. My systematic problem is often not my conscious feelings. It’s the underlying identity-forming assumptions that I adopted at, say, the age of twelve or sixteen that are fucking me up so badly. I need to discard core parts of my identity (again!). The truth is that I’ve always hated incrementalism. Always. I mean what can be more insipid than crawling at a slow and steady pace? What could be less satisfying? What could better represent the rankly inferior? I can’t think of any aesthetic way of living that isn’t fundamentally immoral that I have despised more. It all goes back to that stupid story of the tortoise or the hare. I’ve never bought it’s idiotic moral—steady by slow wins the race. Indeed, it’s a stupid moral. Steady but slow may help you finish the race, but you’re going to lose the race to steady but fast every fucking time! Let’s get real. It’s not a dominant strategy.

Well, I am slow now. Indeed, I saw a cognitive therapist named Annette Coangelo and she, very brilliantly made two points absolutely clear to me. The first is that I still have extraordinary abilities and can pretty much still do everything I used to be able to. The second is that I am going to do everything that I used to do far more slowly than I used to. I can make any journey. I’m just never going to win the race. Many years ago, my friend Faedah Totah gave me the text of a poem by Cavafy called “Ithaca.” I’ve always loved the poem, but this morning, I’m thinking more clearly than usual, and its point has been driven home to me clearly. The journey is meant to be savored and one cannot savor something quickly. A journey is not the same thing as a race and God means for me to take a journey, not run a race. God has reason in the lessons he has given me. As much as I’ve hated the course, what I’ve learned has been worth the suffering. Not every course can be fun. Life takes discipline and discipline is rarely fun. Not until you’ve mastered the discipline, anyway. Then it can get really fun, because you get the job done.

I still have a problem, however. Winning the race was one of the things that made it possible for me to provide the steady performance in the journey. I loved beating the other guy (get your mind out of the gutter, that wasn’t what I was talking about, even if your smutty insinuation is completely true). I also loved the fast aspect of my steady but fast strategy. I got off on watching what I was building grow before my very eyes. It kept me motivated. The most dejecting thing about the MS experience has been living through failure after failure as I keep fucking things up.

Which brings us to the point of the whole post. I need to learn from Ted Thompson. Two years ago, the Packers went 4-12. We started the next season by losing 26-0 to the Bears. We were rebuilding. Rebuilding hurts. Well, in a lot of ways I’m rebuilding, but I haven’t realized it. To be honest, I’ve responded a lot like Brett Favre has over the past two years. I’ve completely freaked out about the loss of identity involved in my brain damage, and ever since, because I can’t live with losing, I’ve been throwing stupid interceptions. My ability to organize has been seriously compromised, just as the Packers offensive line was seriously compromised in 2005 when Marco Rivera and Mike Wahle left the Packers offensive line. Mike Flanagan but it bluntly when he said that you can’t replace guys like that. You just move on. You don’t fix the old system. You abandon it and rebuild. And rebuilding hurts. Rebuilding means losing 26-0 to the Bears but, maybe, if you’re doing it right, going 8-8 for the season. Sure, it’s nothing to write home about, but it’s better than losing 4-12 for the season and it’s the trend that matters.

I’m currently organizing my second upper-division course. What I’ve noticed is that it is much easier than organizing the first upper-division course was. When it comes to organization, I don’t have much forward vision anymore. It’s frustrating that I don’t seem to anticipate what my problems will be the way that I used to, nor do I adapt as quickly as I used to. I learn more from hindsight now than I do from foresight. That hurts. Marx said of the revolutionary of the 19^th century:

On the other hand, proletarian revolutions, like those of the nineteenth century, criticize themselves constantly, interrupt themselves continually in their own course, come back to the apparently accomplished in order to begin it afresh, deride with unmerciful thoroughness the inadequacies, weaknesses and paltriness of their first attempts, seem to throw down their adversary only in order that he may draw new strength from the earth and rise again, more gigantic before them, and recoil again and again from the indefinite prodigiousness of their own aims, until a situation has been created which makes all turning back impossible, and the contradictions themselves cry out:

Hic Rhodus, hic salta
Hier ist die Rose, hier tanze!

I’ve always wanted work to feel like that. And it did! Yeah, true, I may have often wound up much more often like the revolutionary of the eighteenth century—

Bourgeois revolutions, like those of the eighteenth century, storm swiftly from success to success, their dramatic effects outdo each other, men and things seem set in sparkling brilliants, ecstasy is the everyday spirit, but they are short-lived. Soon they have attained their zenith, and a long crapulent depression seizes society before it learns soberly to assimilate the results of its storm-and-stress period.

—but what the fuck did I care? I loved working because working was a charismatic high and I loved being high on work. It was better than any chemical. If I had to weather a hangover in the morning, so what? I’d partied all night and that was all I cared about. I had the stamina for it back then. It was a fun lifestyle. I liked living that way and I liked myself for the life I lead. There’s a reason this has hurt so much.

Well, building a football team isn’t like that. Sure it takes passion. But it also takes perspective. It takes patience and quiet work in the face of all the bullshit that everyone is throwing at you. Ted Thompson hasn’t given a shit about what anyone has said about his strategy. He doesn’t run around justifying himself to people. People get pissy and ask why he didn’t pick up any new offensive players over the off-season and he replies, “Yeah, kinda strange that I didn’t do that, isn’t it? It’s not my usual approach.” Favre throws a hissy fit, and Thompson just quietly papers over the glaring breach. Last week, when asked about the failed trade, Favre said

Favre said. “I think Randy’s doing what I thought he would do. I mean, I’m not surprised. They throw it up to him in triple coverage and he catches it. I mean, he’s done that I don’t know how many times against us. Could he be doing that for us? Sure he could.

“But what our guys are doing is outstanding. A different style of play, but outstanding. What we ask our guys to do, we probably wouldn’t ask Randy to do and vice-versa. But we’re having a lot of success here right now, we hope it continues, and a big part of that is because of our receivers.”

This is a different style of play for me. It will have to lack dramatic effects and sparkling brilliants. I have to learn slowly now. So I’ll do the application that matters the most this term and realize there will be a lot of emotional stuff I’ll have to cope with. I’ll learn from that. As I start getting the hang of it, I’ll be able to add more on. I’ll get a feel and a rhythm for the work again and I’ll eventually learn how to do rounds of applications, just as I learned how to design a course. Yeah, it will probably be a losing season. But I’ve got to suck before I get better, because I’m learning this from scratch. I can’t replace the skills that were integral to the old system. I need to learn a new system. Rebuilding hurts, but I can do this.

But not tonight. Tonight is the Packers-Cowboys game. I couldn’t be more pumped.

Little Epiphany

I only have twenty hours of quality time and I keep wanting to push grading and applications into my ten hours of shit time, but both require quality thinking. Doing these things, therefore, crowds out meaningful work, creating resentment on my part, especially for applications. Grading at least has redeeming value in that it helps students improve. But crowding out creativity makes my life bleak, which is why I am so resistant to applications. I need a very bleak term in order to get applications done.

Fog, Part III

When I left off, I said that the most difficult and frustrating problem that I deal with is coping with meta-object fields, object fields designed to help you coordinate action between various object fields. Even further back, I wrote about not being the kwisatz haderach anymore—not being able to be in many places at once and the feeling of reduction in self that results from being able to carry out fewer simultaneous activities. My problems handling meta-object fields are at the very heart of that experience. This is also where my other cognitive damage comes into play. In addition to the short-term recall problem, I also have difficulty suppressing emotion. That always plays into my problems.

A Divided Life

Habermas tells us that under capitalism, our lives are divided into many spheres of action. So much of who we are is how we balance the demands of many different spheres of life. Each comes with its own unique set of symbols, its standards and values. Indeed, often these are converted to a literal discrete setting to give individual setting that help convey the intended effect of a sphere of action. This actually makes a strong difference for managing my illness. You may recall from the first part of this article that object fields that relate to real physical places with objects in them, e.g. my kitchen, are the simplest for me to deal with. If I leave the salad I am chopping to go the refrigerator to fetch the next vegetable and then forget what I am doing, I can glance back at the counter, see the salad, and this will trigger my memory. Purely mental object fields are more difficult, because there are no physical actual objects to which I can refer to trigger my recall. That said, most mental object fields are stored in long-term memory. I can teach you the history of the Arab-Israeli conflict, how to write a good persuasive essay or how to speak Arabic because these things are in my long-term memory. My long-term recall seems to be completely normal. I discussed how developing new ideas takes me much longer now because a newly imagined idea is not part of long-term memory. I can’t critique the idea as I write it. I need to write it, look at it, and then criticize it.

Our central problem, according to Habermas, is integrating our lives in order to be fully human and not some mechanized automaton. He talks about the colonization of the lifeworld, a phenomenon in which one of the spheres of action takes over that space in which we imagine ourselves as a human being and where those values that are central to ourselves as an integrated whole. Systems can colonize the lifeworld because they can create an overwhelming reality by presenting a world in which the activity is manifest as the obvious function and goal. The error is mistaking the system for our integrated life. An easy example would be the behavior of German bureaucrats during the Holocaust. German bureaucrats were given commands regarding the slaughter of innocent people, which they carried out. Many did not like it, but they nonetheless obeyed. Habermas argues that this is because of the colonization of their individual lifeworld. They ceased being human beings who were employed as bureaucrats and became bureaucrats who from time to time allowed themselves to encounter others in human relationships. The imperative to be a good bureaucrat and follow orders overrode their human values that told them what they were doing was wrong. Their identity as bureaucrats trumped their identity as humans.

The balancing act that Habermas was concerned with was being able to know when to put aside the technical values of work and pick up those values that make us genuinely human, those values that should serve to integrate our lives. My balancing problem is far less profound and, to be frank, a little embarrassing.

Meta-object Fields

There is a single object field that is never part of long-term memory—the meta-object field. Under capitalism, a person’s meta-object field changes quickly from day to day. It is subject to constant revision. Day-to-day work is not usually done in one sphere at a time. Rather we do a task or two every day in the various different spheres of life in which we are involved. If you want to view each task in a given sphere of life as having a story, a narrative, the meta-object field really has none. It is simply a world of changing lists. Right now, I’m balancing between six or seven:

1. Self-care and maintenance: Washing, eating, doing the laundry etc.

2. Finances: Keeping up with my budget, balancing the checkbook (like that ever happens). This element is by far the most complicated task in my life, see the bit about “Shame” below for more details.

3. Health: I see several physicians and take several medications, many of which have different rules for both when and how I take them and for their renewal at the pharmacy. Moreover, because contemporary illness requires you to see many specialists, the patient must take a highly pro-active stance toward health, constantly integrating the information with which they provide you and asking questions to prompt new strategies. It helps to try to follow, as far as you can, the state of medical research on the illness. Being a patient, ironically, requires dynamism.

4. Teaching: This, of course, is my actual job, in the sense that this is the task for which the university gives me a regular, if paltry salary. This is the professional sphere in which I have the greatest success. Teaching is a very structured object field. Its patterns help impose order on my day. It also is deeply satisfying. Items 1-3, in contrast, have become a colonizing force in my life. These things used to be peripheral. Now they are dominant fixtures in my life that are big enough to shape my identity (see the posting about the saucer).

5. Research: This is the actual process of contributing to knowledge, not funding that process. I’m having a great deal of trouble getting to this. I’ve presented a single paper at a conference. That’s basically it.

6. Searching for funding: Contributing to knowledge needs time away from teaching. Getting this time requires you to prepare applications, a serious endeavor in itself, one that is going to take serious space on my saucer if I’m going to actually get anywhere with it. I missed six grant deadlines last year—a complete and total failure. I’m starting from scratch again this year, and yes, I’m late. We’ll see if I get any out this year.

7. Family and social obligations: There are myriad birthdays and holidays to be recalled. Nothing in any of the above spheres reminds you of this. Moreover, failing to recall the events and respond properly is taken as a sign of disrespect. There is no one in my family who I have not unintentionally hurt in the past seven years. It’s all well and good that people need to understand that this is not deliberate, yadda, yadda. It will never happen. This requires too much cognitive discipline around an important symbol. People are simply going to be hurt.

The challenge is to create a scheme of prioritization and then actually use it effectively. Each subfield has its list of “next steps.” My first difficulty is one of contextualization. My ability to contextualize a given context, leave it, flip to another context and recontextualize is very limited. Before the illness, I used to do this unconsciously. Now, I do it with a great deal of effort.

I have many tasks relating to many projects. It would be swell if I could just work on one project at a time. But as you can see, self-care, finances and health are things that I can’t just shove into a corner and ignore. Well, I did for the first several years after I was diagnosed. I lived in utter filth and ate badly. My life was basically whatever I got done in my office and going out with my friends when I got a chance. Well, I’m married now. I can’t live like that anymore. Needless to say, my social life has died. Even with a very loving and helpful partner, I can’t take care of a household, take care of school and get out and see people. My basic social outlet in the fall is I go and see the Packers play with Jenni, mostly because she is kind enough to help structure me to actually get to the bar to see the game.

Well, the trick any busy person uses is to divide and conquer. You prioritize each sphere’s to do list, pick a few items from each list and go from there. But to prioritize them, you really need to track two other sets of information. The first is a relative weighting of how important each next step is in terms of the “big picture.” Which front requires advancement first? What ordering of steps is best for the war? The second is a knowledge of how steps can be “tucked” into the greater scheme of the day. It may be in my best interest to go the library to return a recalled book. Well, I often have other business in areas near the library or in the library itself. If I’m going to the library anyway, I might as well add those steps in so that I can kill two or three birds with one stone. Those other steps may be relatively low priority, but as they have to be done anyway, it makes sense to do them. Creating the day’s “to do” list is a cognitively difficult sorting task. So not only are the mental objects in the meta-object field not there for long enough to ever enter into longer term memory and, as a result, be recalled clearly and instantaneously, they require extensive sorting. Moreover, my lists have to be very specially crafted. Because my recall is bad, my ability to sort items is highly constrained. If there are too many items on the list, I won’t be able to order them.

I can easily spend two hours trying to plan a busy day. This is, of course, ludicrous. But it’s really a very difficult trade-off. If I don’t go through the effort, I will go out and have a very inefficient day with very spotty performance. Maybe things will happen and maybe they won’t. Moreover, I won’t get any “kill two birds with one stone” effects and things will take much longer to do. But sometimes, the sorting is just too fatiguing for me and I just run out and do whatever I can that day, feeling that doing something is better than nothing. Intensive sorting of any sort is highly fatiguing because it is highly taxing for my sclerotic frontal lobes. It also creates an emotion that I find very difficult to accept: confusion. Recall that I can’t suppress emotion worth a damn. Pushing past fatigue and confusion is not particularly easy. Moreover, I really only have twenty good hours and ten shit hours in which I can actively live my life in a week, instead of resting. Sorting takes quality time, not shit time. When school is on, I don’t have any quality time. My finances, in particular, suffer.

Back to Integrating Life

In a sense, our day to day life, while not meaningless, rarely exists as a discrete unit of meaning. Little fragments of the meaningful units happen each day and you put them together in your mind. Routinized life, when it’s good, is like a montage. Story units are the units of meaning. It’s really only in terms of the bigger story that life gets meaningful. Habermas’ bureaucrats live colonized lives. They cannot remember their true selves when they need their integrity the most. They are taking the wrong value cues from the situation. They sign death warrants for genocides because they think as efficient bureaucrats and not compassionate human beings. I remember the right values. The problem is that I have too much life. There are more spheres in my life than my poor eviscerated brain can handle. I am like a computer with a powerful processor, a large hard drive and a pathetic single stick of memory. The only thing I can think of to balance the damned equation is to drop out of school, but I’m fucking ABD and I want my goddamned degree. I haven’t suffered through thirteen years of post-secondary education and two masters degrees to be crushed here.

I used to see the big picture all the time. But to see the big picture, you need lots of short-term memory. I see the smaller parts of the picture quite clearly because I live in those smaller parts long enough for the schema to sink into my long-term memory. The big picture for a grand theory is much harder to put together, but eventually I will know it well enough that it, too, will become long-term memory and I will know it. But the grand schema of a "to do" list will never be long term memory. To do lists change daily. This means I am always going to have a great deal of trouble living with my life divided between many spheres of action. I’m having a dickens of a time getting any applications out because I just can't get out of enough spheres to stay in application land long enough for that schema to become clear. If I can't stay there, I can't get the applications out. I honestly don’t know what to do.

Fog, Part II

It’s embarrassing how long it takes me to get back to things sometimes. I wrote “Fog, Part I” back in January. Part of it is just being slammed with work. But part of it is that often the first part of a piece comes quickly, but I can’t solve the problems in the second half. That’s been a problem here too. Who knows if I’ll ever get back to those Gilligan’s island pieces on Marx? That pisses me off. I had fun with Gilligan’s Island and Marx. I was going to talk about the meta-object field. I’m going to put that off one more time. Writing about my problems sorting and suppressing selected emotion really sets that up well. As always, figuring out the ideal order to attack a list is my central problem… Sigh.

Sorting

Sorting is a task that relies entirely on short-term memory. Say you have a list of things to do. Perhaps you can remember them without writing them down. I certainly cannot. Well, so what, you ask, lots of people are like that. But, if you are looking at that written list, most people, especially those with a gift for organization, can sort that list of tasks in their mind. They hold the items suspended in their memory and shift them around until they find a satisfactory order. I used to do this all the time and just assign numbers to each item on the list. I can’t do that anymore. I have to physically re-order the list, look at it, and decide how well it meets the sorting criteria. I now try to avoid making lists on paper. Re-writing the list takes forever by hand. I can cut and paste on computer. Still, even then, this is a difficult process. My lists have to be very specially crafted. If there are too many items on the list, I won’t be able to order them. It takes too much time—far more time than I did before. But the process is further impeded.

Suppressing selected emotion

We make all our decisions based on emotion. For those among us who like to view themselves as fundamentally rational (and until this illness I was most assuredly of their number), this assertion can provoke resistance. That resistance is utterly unfounded. If a human being experiences damage to their amygdyla, the part of their brain that provides emotion, they begin to make disastrous decisions, because decisions are made on the basis of emotion. The portions of their brain that dealing with reason can be completely untouched and they will still make disastrous decisions. Reason is not at stake in decision making.

Those of us who are fond of being “rational” use reason as a discipline. We take our problem and how we feel about it and we interrogate that problem and those emotions using reason. That critical process can indeed serve as a foundation for making decisions. That said, what the process actually does is change how we look at a situation and, hence, how we feel about it. That said, I’m sure most of us can recall times in which our rational process tells us we should do something, but our emotions overpower that process and we instead do something that, while it feels good at the moment, we know at some cognitive level is the wrong answer. This is because the process of rational inquiry is not a reflex, a fundamental part of our nature. It is a discipline. Discipline is a pattern of behavior that we internalize. The point of that process of internalization is in a sense to reprogram ourselves to feel some way that we would not naturally. That effort can fail.

The principal technique of discipline is the suppression of selected emotion. We use reason to “rationalize” the process in which we are engaged. We analyze the situation decide which of the emotions we feel are the “correct” ones that should be privileged in making our decision, and then we suppress the others. It is this last process that has been severely impaired.

For example, I cry at movies now. I rarely cried at movies before the year 2000. Now I cry all the time. But what is truly embarrassing is that I cry at sappy movies. It’s not that I don’t think the movies are sappy. On the contrary, I know they are sappy and simultaneously feel revulsion for that sappiness, and distress that I am crying over such an obviously sappy movie! However, emotions tend to be reflexive. This is most evident with shame. Shame is a reflex that is triggered when others confront us with having exceeded our proper bounds. It is a shrinking, a desire to disappear. A frequent male response to an individual implying that a person should feel shame is violent anger. This response, however, is not made in place of shame. Rather, it occurs because the individual feels shame as a reflex, thinks about it and realizes they have been forced to feel something they do not want to, or worse, something that they ought not to feel because they have not actually exceeded their bounds. It is this experience that converts the shame into anger and so often leads to violence. When a film “tugs at my heartstrings” now, I have no defense against this. When I was younger, I cried occasionally, but it took something genuinely moving to override my strong will to suppress emotions that I did not wish to feel. Now, I feel it all, all of the time.

Emotions in the organization of a regular object-field

When making and dealing with organization, this is an enormous liability. Let’s begin with one of the most ludicrous situations that I have dealt with since the onset of illness. Imagine it’s 9 am. I’ve woken up. I’m groggy, owing to the medicine I take that deepens my sleep so that it is actually restful and benefits me (the disease makes me sleep very lightly and without the drug, my fatigue is far, far worse). I’m hungry. The floor is cold and I’m only wearing socks. My hands and feet have always grown cold very quickly, ever since I was a child. I’m hungry. The sink is full of dishes. Everything is filthy (I suffer from chronic fatigue and am a graduate student. Dishes are a very low priority in my life). There is a proper response. That response is (1) go find and put on your slippers, (2) wash a bowl, a spoon, a mug and the dirty parts of the espresso machine, (3) take your morning meds, (4) make a cup of coffee, (5) pour yourself a bowl of cereal and eat a banana so that you have some fuel in you and (6) do the dishes. I can tell you this with very little cognitive work, even now.

Now, if you read “Fog, Part I” you know that I often forget what I am doing while I am doing it. Add morning grogginess and you really have a disorganized twit. Say I look for my slippers and can’t find them. I go back, but the floor is sucking all the heat out of my feet and they’re freezing. So maybe I impulsively forget that I can’t find them and search again. I eventually get the picture that I’m not going to find them while the house is a mess and I’m groggy and hungry. I need to take some of the emotions off the table. But I can’t suppress any of them. So I start washing the necessary dishes to get caffeine into my system to counteract the grogginess and eat to dispel the hunger. But the dishes are revolting, so maybe I can’t stop doing them. So I do half the dishes before my feet have gotten so cold that I can’t stand it and impulsively break away to search for my slippers again. I’ve spent a lot of energy without eating and I don’t have much energy, so maybe I then sit down. I rest a little and maybe cry (like a girl) because I’m frustrated and don’t know what to do. Well, I still desperately need fuel. Did I wish the proper elements in that big (yet still incomplete) washing of dishes so I can actually do this? If I’m lucky, I did. Maybe I didn’t, so I have to put off eating and drinking coffee yet again to wash them. And God help me if I wind up out of milk, coffee or cereal. By that point I may go down to Starbucks for coffee and a scone. That is, if I’m not also out of money.

All of that and I can still teach you the Arab-Israeli conflict, how to interpret motherfucking hard texts by German theorists, or how to speak Arabic. The humiliation can be unreal.

Since I can’t suppress emotions, I have to balance them against other emotions. Say you’re a student who wants a letter of recommendation. I can promise until the cows come home, but I can’t suppress the urge to procrastinate very well, and I’m forgetful as hell. Procrastinate once, I’m likely not to remember that I need to write a student a letter again for a week, especially if I’m busy. I now try to get the student to meet me and write the letter with them. Since they are physically there and spending their time with me, my feeling of obligation to them will then outweigh the desire to procrastinate. It sucks for the student that he or she has to sit there while I write in order to get his or her letter. But what I do is interview them for good fodder for the letter while I write. Then I let them see the letter and also explain my strategy is writing it. They not only get to know what they’re getting, they get to be asked questions that frequently ferret out thing about themselves they wouldn’t have written in their personal statement, but then realize is gold. They also get taught how to write a letter of recommendation. The students love it. But I’m still humiliated by not being able to keep my word. Instead, I have to learn not to give it and say, “No, I can’t write this letter unless you work with me on it. I’ll blow it and you off without meaning to and you’ll be screwed.” Admitting that I am not capable of being responsible humiliates me more than I can say. It sure makes a mockery of being that noble Nietzschean creature with the right to make promises.

Shame

As far as everyone who met me here in Seattle is concerned, I’ve always been a space cadet. Dealing with the shame associated with being unable to control the image people have of me with respect to my competence has been deeply humiliating. I was diagnosed in 2000 and I’m only beginning to come to terms with it this year. I choke far less often now, but I still have issues with it. Imagine taking a summer job with a variable schedule, forgetting to come in for a shift (welcome to short-term recall hell) and put off calling your boss for three days to explain because you are so ashamed that you can’t force yourself to face her. You must understand that I was the soul of responsibility before MS. The shame of fucking up is unreal. Moreover, I can’t suppress the shame. And shame makes you retreat from a situation. So I hide like a fucking ostrich with its goddamned head in the sand. People who do this are usually too stupid to realize that they will have to face it eventually. I know that I have to face it, but am powerless to suppress the emotion. It rules me. I am the slave of my fucking emotions. My only hope is to get really zen and okay with everything. Anyone who knows my personality realizes how difficult that is for me. I'm a pretty passionate guy. Detachment is not my strong suit.

Next time, the damned meta-object field. And music. I can’t handle music anymore either.

The Saucer

Through years of therapy I have finally come to grips with my reality. My energy and focus used to be the metaphorical size of large platter. About two-thirds of that platter was taken up by events that I officially budgeted time for in a disciplined fashion and one-third of it I used in an “off-budget” ad hoc fashion. I shoved stupid things like "housework" and spontaneous things, like a three course meal for eight people and poetry reading into this part. So I had my life set-up so that the acknowledged portion was always cool stuff like school or my job at USAID. There were many off-moments despite how tired I felt (as if I knew the meaning of the word back then) and I got all the bullshit done without every really acknowledging it as a serious part of my day. Plus I did fun off the cuff things.

Now my energy and focus are the size of saucer. That saucer is a little under metaphorical size of the third of a platter that I used to routinely blow off as irrelevant. In order to survive, I have to do things like eat, cook, wash my clothes, etc. I can't fit that into some off-budget moment. There are no off-budget moments. Feeding, cleaning and making sure I'm properly medicated, etc. is now a third of my life. The result of my inability to comprehend or accept this meant that for the four years before I knew Craig, I lived in a complete shithole. Craig and I do better than I did alone, but it takes way more time. But simply but, self-maintenance was never allowed onto the official budget before, with obvious results.

The saucer has two other sections. Teaching a class I've already designed takes one of those sections. If I'm designing a course or getting all the kinks out of it on the second run, that takes the last third. If I study an easy language (i.e. Hebrew), that takes a third of the plate. Writing takes a third of a plate. I'm bombing Hebrew at the moment, because there are four things on a plate with three sections. Predicatably, I've started bailing the Hebrew canoe and have stopped writing again.

No more Hebrew next year. Hebrew is an easy language. Two years are all that it gets. I apply for grants and teach first quarter. I write and teach second and third quarters

Fog, Part I

I promised Sean that I’d explain what I meant by “fog.” He asked, “How problematic is it? As someone who is absent-minded naturally how different is it? One article said you forget why you went to a store. You forget people’s names etc. This happens to me often, so I write everything down. I am assuming there is something much more serious and sinister.”

Yes and no, Sean. It is a very natural response to trying to use empathy to understand the problem (indeed, that act is the very foundation of social science). Moreover, you are right in believing that you have experienced what I experience—indeed everyone does experience absent-mindedness. The practical difference is not qualitative. It’s quantitative. A healthy person does not experience absent-mindedness as many as twenty to thirty times a day. For me, this is quite normal.

Recall not memory

You are right, however, that this is a problem that normal people have. We all experience small recall problems. We search for a word that is on the tip of our tongues. We forget someone’s name. We got to the refrigerator only to forget what it was that we were getting. These are recall problems—the memory is still imprinted in the cerebral cortex, it can still be accessed. If you have a memory problem (an illness such as Alzheimer’s, for example), the memory itself is being destroyed and, as personality is a direct product of memory, your identity is destroyed with it. You know less and less that you have a problem and everyone you love suffers as your personality and every memory you have of them are destroyed and they get to watch the walking corpse.

A recall problem is nowhere near as cataclysmic. You can remind me of what I’m forgetting and, almost without exception, I’ll remember it. While you are out of sight, I may forget that I was supposed to do something with you, but my memory of you and what we were supposed to do is still there. If I have a list of things to buy at the store, it will jog my memory. Someone with Alzheimer’s will not even recall the context of the list or know what to do with it.

I think a good analogy is to think of a computer. A computer has a processor, memory and a hard-drive. My processor is fine. I think pretty quickly and accurately. My hard-drive is fine. People with Alzheimer’s essentially have a bad hard-drive that is destroying all the data on the disk. My problem is that I have shit for memory. Just like a computer that’s running the latest software with low memory, I can still do the task. It’s just slow. I can still do virtually all the things I did before. I simply cannot do them efficiently.

Some of the tricks a normal person uses will work for me too. Writing things down is key. But unlike a normal person, I need to make sure that I get things written down where I can see it when I can actually do something about it. For example, my mom can call me earlier in the day twice to remind me that it’s my father’s birthday. But unless I write it where I can see it in the early evening, I’ll completely space. It doesn’t matter that my mother called me twice to remind me. And it doesn’t matter how important the person involved is or how much I love them. I’ve spaced on Craig’s AA birthday, my mom’s birthday and most of my friends can attest that it’s been years since I remembered their birthday, if indeed, they ever knew me before MS. Plus, recall that multiple sclerosis is a nerve conduction problem. There are good days and bad days. Some days I remember without a reminder. Some days twenty reminders won’t be enough. There’s no way of telling which kind of day tomorrow will be.

Concrete Object fields

Coordinating between different times and spaces is very difficult for me. This is hard to explain. I had to develop a vocabulary to even explain the problem for myself. So that’s how I have to explain it to you. In order to relate to a set of discrete objects or ideas, we construct what I’ll call “object fields.”

Object field: a cognitive “space” delineated by networks of associations that lead the mind to group certain objects together as an interrelated and discrete whole.

Meta-object field: a cognitive object field that contains other object-fields and that is constructed to coordinate between them

The object fields that are the simplest for me to deal with are those that are based on real physical locations where I happen to be. The advantage in this case is obvious—I can see the space and that sensory stimulus is a constant reminder. It’s hard to forget something that you’re looking at. But even when dealing with physical object fields, I have problems, particularly in complex work areas such as the kitchen.

Say I’m making a salad. I leave my cutting board and the knife on the counter and go the refrigerator to get some vegetables. When I open the refrigerator, I’ve entered a new object field. Often, when I move from one object field to another, I forget what I’m doing. So I’ll be standing there looking at the refrigerator trying to remember what I was doing. So I’ll have to look away from the refrigerator and look back at the counter. When I see the cutting board and knife, they jog my memory. So far, so good, right? That happens to everyone.

What doesn’t happen to everyone it that when I look away again, I’ll forget again. Lather, rinse, repeat. On a bad day, it may take three or four repetitions before I get it right. Imagine accruing all of those time losses every time you change object field (if you open a desk drawer, you’ve just changed object field—we change object fields just that often). The time losses rack up. Bottom line: I can still make a great salad, but you can do it faster, especially since you don’t have the recall problem and are likely to be faster with a knife than me. Being slow with a knife, however, has nothing to do with MS. I’ve always been a klutz.

Object Fields and the World of My Imagination

Now, I’m allegedly an intellectual. Lots of what I do happens solely in the mind. There are no physical objects to glance back at to remind you. Yes, there is a physical bunch of people who are the Congress of the United States, but no one who studies them has them all seated in a room. Moreover, certain things like “institutionalization” are rather abstract. Fortunately, most of those object fields are part of my long-term memory. But you see, it’s my job to invent new concepts. Now my imagination still works just fine and that was my real academic asset, as not everyone has one. So I can still do this job. But now, I’m way slower.

In my imagination, there are all sorts of connections. One thing hooks up with another and another. There’s always this huge, amorphous incoherent “structure” that feels like it’s the Theory of Life, the Universe and Everything. Well, back when we were first-year grad students my buddy Peter said (and he had a point), “Talal, you can’t write the Theory of Life, the Universe and Everything. You have to pick one. So what’s it going to be: life, the universe, or everything?”

Well, what I would have done before MS was to loosely define the contours of the whole pseudo-structure in my mind, find the general boundaries of the part I wanted to write up and distill that bit into a coherent, well-crafted theory. But my short-term recall is shot. Trying to cut out the bit in my mind that I want is virtually impossible. I don't know the pseudo-structure very well, so it exists only in short-term memory. I have to do two things at once: recall the whole structure and then step away from it and criticize it. That's too much brain-power at one time. I keep losing focus on the outline of the large structure as I explore it to criticize it. In the seconds in which I lose track of the process, I start following all the luminous connections that my imagination has generated and, as a result, keep losing track of the task.

What I’ve discovered that I have to do is do my best to spend a few months writing a sixty-page document that is a rambling mess but contains a great deal of the amorphous pseudo-structure in my head. Then I can see the pseudo-structure and don’t need to hold it in my head and criticize it at the same time. Yes, I'll still get distracted, but my eyes will still be resting on the same shitty passage I was critizing before and that will pull me back on task. I don't get as lost that way.

After doing the write-up of the pseudo-structure, I need to wait a while before proceeding to criticism, because trying to force that much material out of one’s imagination into the daylight at one time is exhausting and really fucks with your emotions. So a few months later (yes, that long) I can pick up the rambling mess and use all my brain power just for criticism. I don’t need to recall anything, because it’s right there on paper in front of me. Plus, having given birth to far more of the pseudo-structure than I needed, I can probably distill a few papers out of the mess.

But it’s slow. Worse, it looks like you’re not really working most of the time, especially to people who are not writers. That’s pretty humiliating, because I’m trying really hard the whole time. And you burn out several times on the road and wind up playing Civ 3 or Spider Solitaire just to get you mind off of it and let stuff work at the back of your head. That doesn’t build other people’s external confidence either. But you’ve got to take those sort of breaks if you’re to get the job done.

This is quite a mouthful. I’ll start with meta-object fields next time.

The Fog Rolls Back In

Well, it’s back to the drawing board. I stopped taking Adderall XR about three days ago. It increases my naturally high level of irritability to hypersensitive levels. Poor Craig has survived me in the last month of the term with the drug in my system and it’s been hell for both of us. Enough is enough. I need to write an e-mail to Dr. Thompson, my psychiatrist and see what he says. Hopefully he may have some ideas between now and when we meet in roughly two weeks.

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So the drug’s gone, I’m tired, I think a little less clearly and the fog is rolling back in. It’s not that it ever rolled out—that will never happen again—but now it’s thick again.

Sorry to whine so much. I’ll write something interesting soon. But probably I won’t write as much as I have been. Fuck it all.

Acceptance

Something has changed. It happened slowly, but it’s there.

I’ve been dealing with some of the harder emotions I go through in the set. I’m unemployed this month and we’re short on money. I have a lot of shame issues tied to my financial problems, almost all of which stem from the very serious damage MS has done to the cognitive faculties that make discipline possible. I’m very bad at organization now too, and organizing files and sorting old mail can border on the traumatic for me. It’s a strange disease.

A few years ago, when I moved in with Craig, my mother very unceremoniously took all of my files out of their plastic $35 file boxes, kept the file boxes and crammed the files into a couple of cardboard boxes and shipped them to me book rate. I had to put them in the garage unopened. I had no filing resources and no space inside the house or at my office at school (for the first year Craig and I were together, I still had an office).

I was afraid of opening them because I knew the emotions would gush out at me. I have lots of family of origin issues to begin with. But being confronted with my organizational work from before the illness is always very hard for me, because my gifts for organization were truly extraordinary. I was damned good. I was the kwisatz hadedrach: he who can be many places at once. That’s what good organization does. Organization lets you live in many contexts. And as the self is defined with respect to those many contexts, in a way, it gives you more self. More facets of your self are clearly defined with respect to other times and spaces. You become an integrator of contexts. It’s a powerful high. I miss it more than almost anything else the disease has cost me.

Today I opened the boxes. My files were amazing. I had a file on every country between Morocco and China. Many were thick. EIU reports, news clips, articles on democratization, country studies—good shit. I know see why so many people felt threatened by me. I was actually doing a fairly creditable job of tracking democracy in all the countries between Morocco and China! But I was only a little emotionally overwhelmed, and not with feelings of shame and remorse. Of course, I had to throw most of them away. I kept the Arab world ones. I threw out the remainder. I know I’ll never get around to becoming an Asian specialist. I’m too limited. I’m not the kwisatz haderach anymore. I can’t be many places at once. Not being in any of those places, I need not be defined with respect to them. Simply put, I don’t need all those files anymore.

So many of the files never got used, but this time I didn’t feel remorse at the waste. I was pretty floored by the size of the gap between my abilities then and now, but for the first time, I wasn’t floored emotionally. I wasn’t feeling the overwhelming feelings of regret, sorrow and shame that have haunted me for the past seven or eight of my life. I was just floored intellectually. It was a thought that went something like, “Yeah. Damn. It was real. You really were that good. If you could still do what you did then, you’d be an assistant professor already. You’d be published and have presented slews of papers.” For the first time, though, I didn’t feel despair.

Instead, I realized that for years now I’ve been whipping myself to just get over it. I’ve felt the deepest shame in that in the years since the diagnosis, barely a day went by when I didn’t berate myself for not having come to acceptance of this situation and having moved on. I think today I realized that the whole point is that you don’t just get over a loss of this magnitude. You grieve. You can only stop grieving when you understand what you have lost truly and when you begin to make new attachments that can give meaning to your life. When the loss is this big, the process takes years. I was the kwisatz haderach. You don’t just snap your fingers and get over something like that.

You see, I lost myself. The only way I’ve been able to cope was to say who I was died and that I was a different person, because so long as I clung to the old Talal’s values, I could never be happy being the person the disease made me. My Aunt Charlotte objected to this. She told me, “You may feel as if the person you were is gone, but you are still the sweet, loving boy you always were. I recognize you.” You didn’t die.

But that’s the rub. It took me a very long time to grasp it in therapy. One of the things I resented very deeply was, ironically, how much more people liked me after I got sick. That’s simply natural. Not being the kwisatz haderach makes a guy way less intimidating. But I was also hurt in that I felt that living up to all the ideals that I lived up to was what made people like me and was afraid that once I couldn’t live up to those ideals, they would be as disappointed in me as I was in myself. It turned out that no one cared. I wondered why I’d worked so hard. Was it all meaningless? My therapist Micheal pointed out, “Living up to all those ideals was what made you like you. Other people like you because you are loving.” So at some levels, then, score one for Auntie Char.

But I lost the self that I valued. So no one else gave a shit about that guy and feel that the only difference is that I’m more loving. Getting to be that guy every day was the reason I woke up every morning. I loved it. Yeah, there were hard moments, but I was the kwisatz haderach. Imagine zapping Superman with kryptonite, taking away all of his powers and saying, “Hey, Clark. Chill, dude. You’re still a hell of an investigative reporter. You may still win a Pulitzer (fuck, Tom Friedman has two—you gotta be able to beat him, right?). And you’re a really great guy, everybody likes you. And you could still bag Lois one day. It could happen.” I mean, the guy could fly! What the hell is winning a Pulitzer compared to that?

I mean fuck that shit! My creative power was what I cherished most about myself and it’s taken a permanent hit. Grieving wasn’t an indulgence. It was a necessity. The loss to me was enormous. Yeah, no one else misses the guy. But I will, probably for the rest of my life. Cause he was me and not just any me. He was the me that I wanted to be (Sweet Lord, I’m starting to rhyme. Shoot me).

If I’m to be a good Catholic boy (and despite the sex, I keep coming back to it, so I guess I’m a still a believer) I’d probably say that the aspect of Himself that God wishes for us to emulate is His capacity to love, not his ability to create. God wishes us to be concerned with loving, not power, creative or otherwise. But I love creative power. That’s the part of God I want to be like. Well, God has a tremendous sense of economy and has used this illness for my spiritual betterment. So being loving it is. I always said that’s what my life is about. Now I have to mean it. And doing it isn’t so hard. The disease has made all the changes for me. I need only accept it. I guess I do. I’ll try.