Thursday, September 10, 2009


A year ago today, I was having brain surgery. How weird is that sentence to live and write? A remarkable number of you caring, kind people have remembered and written to me about this milestone, underlining once again how much the continuing support we have is sustaining and nourishing. We owe thanks to so, so many people.

That sums up the big picture, a year later: we feel grateful, we count our blessings, we’re glad to be where we are. And, while Michael’s at ease with where we’ve been and what we’ve done, I still grapple with it. I struggle with the realization of how lucky I’ve been and how very much there is to be grateful for while still feeling fundamentally compromised. I’m glad to be here and recognize that there are ways to do almost all of what I want to do. That’s huge. And yes, I’m calmer, deeper, more thoughtful, more relaxed in ways that are an improvement by just about any measure. I can see all that and appreciate it.

At the same time, I’m diminished and I feel it. It’s possible to compensate for and hide the worst limitations, especially in short bursts, but they exist. The on-going brain chemistry experiments are trying and we still haven’t achieved a balance for the long-term.

A year later, most of the effects of surgery have faded away. From the top down, my hair (the first to recover) is completely back to normal. My scalp still has an area that retains that that strange hypersensitivity combined with numbness, but most of it is back to normal. My skull has new ridges and valleys, and because of my hair and the location of the tumor, they don’t show at all, though by touch they’re pretty remarkable. The recurrence of the worst symptoms of menopause (one of the ickiest side effects of this entire process) seems to have subsided, another reason to give thanks. I spend much more time at home because going out in the world still is unnaturally tiring compared to being "in." I plan and ration my expeditions and meetings around work, a balancing act still in progress. I lose my balance in certain situations, which seems directly related to visual overload, though we haven't been able to tie it down any more than that.

I’m still doing physical therapy for my shoulder, and it continues to show progress. A friend came for tea the other day, and I took a tea pot down from a high cupboard, lifting both arms over my head without any particular thought--right up until I needed to get my right arm all the way down again, which required a little calculation. In terms of distance traveled, a year ago, I couldn’t control my right arm. The path has been long and rewarding. The physical therapist plans an assessment next week and mentioned that she thought another couple of months might see us completing our work. She anticipates me regaining full use and control by the time we’re done.

The biggest remaining challenges are the cognitive deficits/gaps and to get my adrenal system going again. The artificial cortisol (prednisone) I’ve been taking now in small doses for months is not stimulating my own production as hoped. Taking the prednisone cleared up the sensation of swimming through mud all the time--a godsend--and also brings its own problems. The current regime of tapering down leaves me without energy by early evening and limits my ability to work. It’s not the worst thing in the universe not to be working so hard in this patch of my life, but it’s frustrating. Even if I seem the same to others--something I hear a lot--I’m not the same. Where I am is less than I used to be, less than I’d like to be.

That train of thought just brings me back full circle to the realization of how lucky I am. My moral puritan then kicks in and admonishes (well, berates) me for focusing on the deficits in the face of such enormous blessings. I know this is not a constructive or useful loop to be living. It is, though, where I am. I plan to journey other places, and soonish.

I never have really come to terms with being a person who got a brain tumor. Who gets a brain tumor, anyway? And what does it mean? Anything at all? Something? Nothing? Looking anew at the tumor image sets me off on my mental chase again. In part, this current mood seems directly correlated with the chemistry experiments in my brain and especially the tapering process, so I’m trying to wear it as gracefully and lightly as possible.

We continue to feel cradled in the hands of so many friends and surrounded by caring. That softens the edges of what’s been an odd ride on an adventure we never contemplated. Old friendships have deepened and new ones blossomed. You carry the day. This adventure isn’t over and we are sustained by knowing you’ll be there through whatever steps come next.

P.S. for those who asked, here's the first visible results of the first step of my response to circumstances here:

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