Thursday, July 9, 2009

Sinking into the Quiet

Earlier in the year, even after surgery, it felt like my brain was profoundly broken. The sense of being broken is no longer so pervasive or profound, but it also hasn't gone away. Tomorrow will mark ten months since surgery, and preparing for a status report, I’ve been trying to look back over this experience and achieve some kind of perspective. Maybe these events are still too close to be able to do so with any real balance. Maybe that will come sometime. Maybe, likely, this is another manifestation of too much impatience or expecting too much too soon, or... whatever. This whole experience has represented a major fork in the road for us, and we’re still feeling our way along the journey. For me, it no longer feels like being on the conveyor belt or being sent hurtling into the unknown, and we’ve returned to more familiar territory. At the same time, I’m not what I used to be or aspire to be again. My thought processes are never smooth or seamless: things that used to be second-nature and to flow naturally all take deliberate effort. Walking up or down stairs, or on any uneven ground, takes concentration. Words are hard to reach and while they almost always come, it’s a slow and frustrating process.

Being here, in this much-loved place, in the sunshine, is restorative. The contrasts with last year at this time are sharp: last summer was difficult, with a sense of never being quite right, replete with headaches, and a sense of greyness about everything. At the time, we attributed it to allergies (the supply of over-the-counter antihistamines here is formidable) and the pressure of not having a grasp on the book I was trying to start. In retrospect, of course, it was probably all a result of pressure from the tumor on my brain.

We listened to Jill Bolte Taylor’s book A Stroke of Insight on one leg of our car trip, and her explanations of brain anatomy and workings, as well as the length of her recovery from her aneurysm (eight years) was instructive. She talked a lot about the restorative power of sleep, and the need for a brain to re-connect, re-sort and build new connections. I’ve always been a good sleeper, and always needed more sleep than most people I’ve worked with reported needing (or taking). Now, I sleep even more than before: a solid nine hours a night is necessary for me to be able to function with even moderate efficiency, and when I have a deficit built up, it takes naps, too. In new circumstances, or ones with a lot of people or visual stimulation (think: mega-store that operates in a language not my native one), I get overwhelmed quickly. Sometimes, in those situations, I end up with disturbances of my visual field, though that isn’t occurring as much as it did even two months ago.

The day after the Fourth of July celebration, for example, I was significantly impaired all day. The evening had been lovely, yet I ran out of steam after three or four hours. In contrast, Michael stayed until the end, and then sat visiting with our hosts until almost 3:30 in the morning, and wasn’t any worse for the wear the next day. My vocabulary and ability to speak fluently were both compromised for several days. It’s frustrating, yet still better than it was some months ago. I know, I know: I should be more patient, it’s only been ten months, it was a lot of trauma to the brain, and so on. I try, really.

It’s not like there are not signs of progress; there are. We’re holding onto the oft-repeated reassurance that, sometime between a year and two years out, there will be another major step forward in my brain’s recovery. I’d like to feel fully like myself again, instead of almost-myself. My personality is intact, and my sense of humor. What isn’t there is a sense of wholeness, stamina, or full grasp of my faculties.

We much enjoyed our voyage of friendship and exploration and are now settling into the quiet here with deep pleasure. We’re developing a rhythm to our days and our work and hoping I can rediscover ways to be consistently productive. The colors and light have powerful positive properties. If I cannot be whole again, my goal is to come to terms with the remaining deficits and to integrate them more fully into a way to go forward with equanimity, rather than feeling partially-broken and defective all the time. Patience and grace elude me; in the quiet, perhaps they can be found.

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