Sunday, September 11, 2011

Who Gets a Brain Tumor, Anyway?

My three year cranioversary was yesterday, and I’ve been thinking about it on and off. The lingering sensation is never really shaking the weirdness of it. Others seem to find it equally fascinating; it turns out a lot of people have a secret fear they might harbor a brain tumor. The compound question I get asked, over and over, is “what were the signals, and how did you know?’ I never did, of course, and didn’t really believe it, then or now. The strangeness of it all is pervasive and enduring. Oddly, until this year’s anniversary of 9/11, I’d never before really noticed the contiguity of the dates. How clueless is that?

Three years after that whirlwind week before and including surgery, I’m a different person. With Michael’s help, I’ve crafted a life that looks similar in many ways to the old one. This is a good life, and I’m happy to have it. Sustained by Michael (and so, so pleased by how he is recovering and regaining his old self), buoyed that our children still have a mother, nourished by the friends and community that rallied round then and surround me now, relieved that I can still work, thankful for the richness and pleasures of a life that fits pretty well. It’s also true that I’m profoundly compromised and diminished, even if it doesn’t show much on the surface. The lessons that have carried us through all of this still apply: if I accept the limits good-naturedly and am open and comfortable with them, those around me will also be.

Friday, the large class I teach met in a different location than usual, and had a platform with open steps to get to the podium. There are two sessions as there’s not a room big enough in the teaching building of the college it’s in to seat the whole group at one time. At the end of the first session, I leaned on someone getting down the steps. At the end of the second session, there were two TAs standing by the steps to help, having observed my difficulties the first time, brushing off my thanks--just there. The moment encapsulates so much of my daily life. Those who surround me are supportive and caring and they make it all possible. I count my blessings even while that phantom self itches away like crazy in the background.

It works. That’s not to say it’s always easy. If I’d had the energy during August, I would have explored here why life has to be so hard. A particularly vivid moment sticks in my memory from the time I was probably 10 or 11--certainly it was before my mother died. Two of my brothers had matching MGBs and one beautiful sunny day, with the roof down, getting in to go for a ride with one of them, I was struck by a song playing on the radio. I’d never listened to the lyrics before and was hit, in that moment, that becoming a grown-up would include perceiving and understanding things about which I’d been oblivious. That future beckoned as fascinating and holding the promise of insight and knowledge.

I was an insecure and uncomfortable pre-adolescent, and the prospect of being a grown-up in the future looked so, so much easier than all the confusion and self-doubt of figuring out who I was and how I fit in the world. Of course, things only got worse in the years after my mother died, for quite some time, actually. That glimpse of the future seemed so promising, when I’d know myself, those horrible questions would go away, and I'd and meet the world head on with confidence. I held onto the comfort of that moment, and came back to it, through many hard days. Well, here I am, and I have all that grown-up comfort in my own skin. That part is much, much better. Hard-won, and better.

Still, where is the easy part, I wonder, when the questions go away?

August was a terrible, terrible month, starting with the fear and stress of Michael’s hospital sojourn (awful) and ending with flying back into a horrible mess at work. The nice thing that the clarity of the self-knowledge does bring--much as I’d imagined and hoped for on that golden day--is how much is truly known and set. I, and we, got through that hard time knowing our coping skills and our foundation are strong. Even in the midst of uncertainty, pain and fear, we’re resilient and have problem-solving skills. We’re better at setting boundaries. Going forward, the limits of sense and reality will apply to the problems at work: I’m not doing a year as full of stress as last year was again, and if that means giving things up that are otherwise worth having, so be it.

Still, I do wonder why it has to be so hard? We have a lot of security and comfort in our lives. Why struggle? There’s an answer and it’s all tied up with all the things that are hard, I think, and it boils down to the reality that the price of caring is risk and the price of love is loss. If you care about people and ideas and contributions, it carries a price. All that puritan stuff about ‘if it’s worth doing, it’s worth doing right,’ and that ‘the good things aren’t easy.’ All that jazz? Yeah, I buy it and I live it.

In any event, I’m alive. I function. I am content. I know happiness. I’m more patient, less driven than before. OK, not a lot, but more is more, however slight it might be. I’m managing to exercise almost every day: thank you, West Coast for the rowing encouragement. I am inching toward an equilibrium in life, even as my energy is limited, my visual and aural stacks overflow, I can’t read fiction most of the time, my head clicks, my balance is suspect at times, and going down stairs is problematic. I aspire to slow haredom. I’m making progress. More is more, however slight.

It’s not deep, but three years on, the fundamental truth of this all continues to be that what matters most are the people. Take time to hug someone close. Reach out to the far-flung. Remember something wonderful about someone who is gone. Eat chocolate. Sit in the sun.


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  2. Tina ... good to read your post. Am glad that you are going well and wish you plenty of happiness to come. I fully understand your feelings and admire you for coming to terms with the 'different you' with such grace. Its hard to explain to others, isn't it? Particularly when, from the outside, one seems pretty much the same. But we never will be quite what we once were. Best wishes xx