Monday, July 25, 2011

Wrestling with My Phantom Self

Remember me? I’m still out here, still working on pretty much all the same issues: balancing energy and aspirations, feeling lucky, trying to finish the process of re-integrating my life after all the changes. During the press at the end of the semester, posting here was sacrificed to getting through, and the busy period had an energizer-bunny-type persistence. By the time it was finally time to stop and rest, extra sleep and time for total sloth took over--and then the merry-go-round started again. In summer! As always, I am acutely aware that I’m very lucky, even to have the challenges I do and that they the good problems to have.

With that as context, the sensation of oddness persists, and I finally found a way that aptly covers it: have you ever read an account about or by those who have lost limbs who still experience sensations from the phantom limbs? That’s how I feel about my missing self. I still have the same impulses, ideas, reactions as always: I know what it feels like to be me. Even with that sense, though, the energy and, often, the full cognitive capacity to “be” that person are gone. My phantom self is always present, often itchy, and I haven’t found a way to integrate it all the way into my new reality.

Some examples:

  • This summer, I’ve been practicing reading fiction, and have made modest progress reading young adult and other non-taxing stuff. The price is that breaks every ten or fifteen minutes are required, for reasons I don’t fully understand.
  • My interest in doing puzzles turned back on, and I’ve made progress in the difficulty of puzzles I can complete.
  • I still lose my balance after about five hours of being out in the world, and it still seems connected to visual/aural overload.
  • While writing is much, much, much (much) s l o w e r than ever, my greatest fear, that maybe I’ve lost the ability to do long-form writing, seems misplaced. The process is completely different than it was before, and the jury is still out on whether the quality is worthwhile, but it seems to be possible to produce words in a coherent stream. That’s been a relief. Interestingly, my dreams are completely different when I’m writing than when I’m not. This turns on and off almost daily, and corresponds directly to whether I’ve been writing or thinking about it seriously on any given day. Six weeks into trying to move the book forward, it’s a totally bizarre experience.

Before you leap to offer reassurances that I seem just the same to you, please, don’t. I know that my imitations of my former self are great and that the changes are outwardly imperceptible. I know how much it is your caring impulse to tell me so. That has been the universal response when I’ve tried to articulate this sense of a phantom self. Notwithstanding how it all looks on the outside, it doesn’t live the same way. We’ve adapted our lives thoroughly enough that it all works, more or less seamlessly, most of the time. It FEELS totally different, though, all the time. Up close, Michael’s life is different. My life is different. My not reading irrevocably alters the texture and rhythms of our life. My energy and balance limits mean that we make explicit calculations just about every day, and often have to re-adjust on the fly several times a day.

Here’s another example that’s small in the describing and big as experienced: we don’t listen to much music any more. Music has been a part of our lives; it brought us together and has always been a shared joy. With the overload problems, though, most of the time, I need silence in order to be able to work, talk and stay upright. Changes like that shape our reality. Still, that same reality encompasses more: I’m alive, functioning, my brain works and I can work. I count these blessings every day, even while scratching at the ever-itchy phantom self.

On the brighter side, one benefit of summertime is the luxury of unstructured time that is leaving space to work on more deeply embedding the exercise habit. The first task was the determination to do it, and the second, more challenging, is to switch from a mindset of “have to do this now, again, today” to making it a habit. There’s progress on that front, but despite rowing 30 to 60 minutes pretty much every day (and at least five days a week no matter what), my weight has not changed by one single ounce. Not. One. Ounce. That is frustrating, and please do not tell me that muscle weighs more than fat. Whatever. With that much exercise, it really feels that it should be making more difference than it is. Since there seems to be a widespread consensus that exercise is better than sloth, I’m just doing it and will stick with it for a while. Surely it should make some difference, some time???

Cheers to all and thank you for the notes, caring and checking-in during this silence. I think of communicating every day and have started many a post. Maybe forward progress will include finding a balance of short and long posts. Connecting with you all enriches and brings meaning. Thank you.