Deb Brandon: Living in Radiant Color

Interviewer–The Blood Brain

ME: Okay, let’s get started.
BLOODY BRAIN: Uh uh uh. My turn. Remember?
ME: Oh yeah. Go ahead.
Sarah and Me, photo by Bill Hrusa Sarah and Me, photo by Bill Hrusa
BB: So let’s see… where do I start? Okay, why do you have so much trouble with pacing yourself?
ME: Hmmm… that’s a tough one. Maybe it’s because I still compare myself to the past me, before the bleeds. Maybe I’m still having trouble letting go of her. I still feel resentful when you limit my activities. When I was in Israel that time, I so wanted to go with Jonathan to Jerusalem, but you’d lashed out at me with a debilitating headache. I was kinda pissed off at you for make me miss out on that.
BB: So you’re saying that you still haven’t figured out the acceptance thing. Don’t you think it’s about bloody time?
ME: Look, first of all, I don’t believe that acceptance is really a goal. More like a journey. And I don’t think I’m doing too badly. It’s not as if I’m obsessing about you anymore, just every so often…
BB: Hold on—what about this constant writing about me? What do you call that if not obsessing?
ME: That’s about writing, about raising awareness, about understanding what happened, what’s going on, and why. This was all so… huge. I have trouble grasping how big it was, what it all means. As you well know, writing helps me work through things. I guess you can think of it in terms of working towards acceptance, though I do hate that word.
BB: Makes sense. But…what’s with you having trouble with the word acceptance?
ME: It just seems so… passive. As if I’m supposed to be spending my time resting, supposedly allowing you to heal or whatnot. My neuropsych suggested that I think about the term acceptance as something more active, a more Buddhist approach–learning to live with you. But that doesn’t feel quite right either. Yes, I have learnt coping mechanisms and compensation techniques. I’ve learnt to avoid situations where the volume of sensory input is high, whenever possible. When I can’t avoid it (like in a grocery store) I either have someone with me, or I get in and out as quickly as possible. I use a GPS when I drive (unless I’m super familiar with the area). I set alarms and write notes way more than I ever used to. Some I do without even thinking about it. But how exactly am I supposed to get to the point where you’re not constantly hovering in the background? You are always there, ready to pounce on me, often surprising me. It doesn’t help that my memory sucks. I mean, I can only learn to live with you up to a point. Think about it–could you live in constant vigilance? It’s like that movie “Alien,” where there’s not down time. As soon as you begin to take a breath, that damn thing jumps out again. I hated that movie. You’re like that, except that the breaks between the surprises are longer. Which makes them more surprising and hard to deal with.
BB: Okay, I can see that. Just so that we’re clear on this, my behavior is not going to change significantly. Maybe acceptance is more about not complaining about it?
ME: Maybe. Though when you catch my by surprise… Sometimes the resentment surfaces out of nowhere. Like when Cindy didn’t tell me about something she was going to be doing because of being left out. Usually I really don’t care that much. The life of a hermit appeals to me to some degree. I do like my space. But sometimes I lament having to forgo some of the activities I used to participate in, especially when it means missing hanging out with people I care about. I can’t help feeling bad sometimes. And you know me, I either write about it or talk about it, or both. I just have to pick at it until I sort it out for myself. But then it’s okay, more or less.
BB: Okay, moving on. Actually, maybe we should quit for now. I’m kinda tired. You?
ME: Yup. ‘Til next time.
BB: Can’t wait.