It is still a strange feeling to be a person who had a brain tumor. The fundamental question “who gets a brain tumor, anyway?” hasn’t really ever gone away, despite knowing full well at least part of the answer. Four years on, I can report that it’s been a strange and wondrous journey. Four years on, we are all acutely aware of how lucky we’ve been: in our loving community of friends, in health care, in health insurance, in outcome. These overwhelm the other stuff, which still exists.
My radio silence here since spring is largely because I’ve been feeling stuck: lucky and experiencing the itchiness of my phantom self at the same time. The incongruity of the two simultaneous and conflicting sensations doesn’t seem to wear off and I figure it’s boring to hear about by now. I don’t have more of anything deep or thoughtful or particularly insightful to say about it than I’ve already said and, not having anything useful to say, haven’t said much of anything.
For a long time, I thought I’d work it through and arrive at some new place, but this portion of the ride seems to be going in circles. We recently found and I’ve started a new, biomechanics-based physical therapy regimen, and that may lead to the “off ramp” for this segment of the journey. The new specialist thinks that she can bring both improved balance (and wouldn’t THAT be a gift) and increase the range of movement in my arm. She also has a theory that some portion of my large muscle groups aren’t ever firing, which may be related to the weight issues: her stance is that the large muscle groups use calories and at least the top third of my quads, for example, aren’t working at all when I do various movements. She’s working on that, and if even a portion of her predictions come through, it should leave me in a better place.
So, on this cranioversary, remembering with clarity that day, the week leading up to it and the following weeks and months, I say thank you to all for the outpouring of caring, love and support that made it possible to be here and writing this today. My heartfelt love and thanks.