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.

Sorrow as a Reminder of Joy

Back in August, I read a novel and it gave me, almost by accident, words that I’ve been searching for. The words were, “It was a condition he’d need to get used to, or to tolerate never getting used to—not exactly the same thing, more’s the pity.” Gregory Maguire wrote them about Liir, the son of Elphaba, the Wicked Witch of the West and his loneliness, something I haven’t had to deal with in years. That freedom is a sublime joy that I’ve gotten very used to. The words apply to me when it comes to the brain damage and chronic fatigue that come along with MS.

The words express my problem. The reason why this is hard is that I keep expecting that I’m going to get used to it—that I’ll get over the loss. That’s the trick. You don’t get over it. That’s what makes it real loss. My difficulty in adapting has resulted from the fact that my goal for psychological healing has been too ambitious. This year of progress results from the fact I am learning to tolerate that I’ll never get over the loss.

Anthony Swofford said, “There is a wreck in your head, part of the aftermath, and you must dismantle the wreck, so you move it around and bury it. It took years for you to understand that the most complex and dangerous conflicts, the most harrowing operations, and the most deadly wars, occur in the head.” I didn’t understand it when I first read Jarhead, but I get it now.

This sense of loss will always be my companion. I will never be able to reflexively imagine myself as I am, to curb my ambition to my present capacity for achievement. I will always need to scale back and control as best I can for the disappointment entailed in always falling short of my ambition. I will do this for the remainder of my life. The pain and the shame are gone. But the sorrow will always linger. This is now my psychological baseline, my normal. Whatever else I will feel (and I will feel much, make no mistake, I am not giving up on life), this sorrow will underlie the texture of my emotional life. It is by no means all of me. But it will always be part of me. Though I did not choose it, it has become a fundamental part of my identity. So much for Schmitt’s assumption of existential identity—it turns out choice hasn’t much to do with it—at least not as much as we might like to think.

I now understand that those things that give meaning to our lives must perforce one day bring us to sorrow, for life is ultimately a matter of loss. Nonetheless, I am no longer depressed or dejected. To remain in such a state would be an immature response to life. Rather, I now understand that sorrow serves a purpose in the divine economy of our emotional lives. It brings awareness and vitality to our joy. I did not know to cherish the experience of power while I had it, while I could change the world around me and be productive, creative. I was too young to know loss yet. Yet the sorrow I feel for this loss, if I am committed to life, awakens me to my present joy. It reminds me to cherish what I have while I have it. It reminds me above all to cherish Craig while he is mine to love, before Death comes, for Death is coming.

When I was younger, this thought would have filled me with fear and desperation. It does no longer. For if I can fill my senses with love for him and truly cherish what God has given me in my partner, then, I know I will have sucked the very marrow out of life (even Henry David Thoreau has his uses, apparently). And my memory of him will be as full as possible and it will lend me comfort in my waning years. For if I am Christian yet, I know that love never dies. And if I have fallen from grace, the fullness of this memory of life lived in love remains the greatest thing I can achieve. My sorrow awakens me to what is most glorious in life. And whether my soul is immortal or not, it will have been beautiful. And mortal that I am, I cannot ask for more and so am content.

Because of the brain damage, my life is always accompanied by alarms set on the stove or my cell phone to remind my poor wandering mind to do things like take the laundry out of the washer and place it into the dryer, to take my medicines, turn on the broccoli streamer just before dinner. The alarm bells drive poor Craig crazy. It makes good thematic sense that God would give me another alarm bell. This sorrow, when it swells in my soul, is one more reminder to cherish Craig while he is mine to love. I who was once so distracted by the future needed this reminder to cherish my present and my partner. I have lost my formidable sense of focus so that I would focus on what was truly important before it is too late.

And so I am grateful. I hope I can carry this feeling with me as well. This must be my discipline.

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.