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
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,
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.
