The exertions of the week, culminating in stressful meetings Friday followed by delivering a four-hour workshop from 5 to 9, wiped out Saturday. I didn’t have the energy to get out of bed. It felt like I had been transported back many months, when staying in bed all day was a normal part of recovery. Except that I’m more than a year past surgery and still trying to figure out how to make this all work. If not in an entire year, when will life get back to normal without all these constant balancing and adjustment dances? Does that ever happen? How much longer before we get there?
Every single challenge is one of the good problems to have, I get that. I’m lucky to be where I am, with as much intact as there is. I’m lucky to be alive and functioning, to be able still to work, even if it requires adaptations. Yet I’m so different than the “me” I’ve known and been all my life that I’m in a constant state of mild to intense disorientation.
Many of the adaptations it takes to pull off the new normal have become routine, assessing each week what’s likely to possible and rearranging activities to increase the probabilities of pulling it all off. This balancing act requires limiting the time spent in crowded situations, plus banking quiet time at home before and after venturing out. It means building in rest periods between activities that will require lots of energy. Planning routes carefully to make sure that mostly I stick with the familiar to reduce exposure to the overstimulation of the new. Asking for help from people in ways that are completely novel and not all that comfortable. Last week, for example, I found myself holding hands with a man going up a flight of stairs, and stabilizing myself on his shoulder going down. He was graceful, warm and charming about it, and neither of us remarked upon how strange it was to be holding hands at work with a colleague.
Whenever it gets particularly tedious, I remind myself that at least there’s a new me to discover. It isn’t necessarily worse than the old one--there are some features that are clear improvements--it’s just different and I’m still discovering how to be that person. Except for Michael, who’s constantly engaged in helping figure out how concoct an approach that’s going to work, it’s hard for others to detect the changes. They’re real, though, and they’re extensive and profound.
It feels like an alien has inhabited my body. It’s hard to explain how odd it is to be me and not-me at the same time. To name just a few, there are things that I’ve done all my life--reading every day, for example--that just don’t feature in this version of existence. Things that I used to have a passion for--making things with my hands--for which the urge is totally absent. Things taken for granted--enjoying the comics--that don’t work any more. Admittedly, losing the ability to decode the comics is a low price to pay and completely dispensable any way you look at it. It’s still strange. It cannot be expressed by saying that who I am now is less than I used to be, because that’s not fully accurate. It’s very different, though still packaged in the same-sounding and -looking Tina. My values and sense of humor are the same as they're always been. Still, it’s odd and disorienting and I’m still learning how to be this person and figure out what this brain will and will not do. Losing my sense of self-determination has been the strangest loss of this experience. There are things I don’t get to decide to do anymore and things I simply don’t want to decide to do any more and there doesn’t seem to be much volition involved in either.
I don’t especially like where I am now or the way it lives, except for all the alternatives. Since I prefer being happy to being unhappy, and since I know full well these are the good problems, even luxuries, compared to the alternatives, I double down on figuring out how to live in this skin and do so with a sense of contentment and completion. We’re in a different gear and going a different speed than we’ve ever gone before, and our destination seems to have changed along the way without us having chosen that. All the same, we’re still puttering along and the landscape on this journey is interesting, if odd and unexpected. There’s no way to tell how long this course is, or its contours. Still, there’s a way forward and we’re on that path. While it would be nice to know where it’s going, we don’t get to know that, so I just keep putting one foot in front of the other. Michael’s there with me, and we’ll figure it out.
So, yeah, this is what progress looks like right now.