Sunday, September 14, 2014

Six Year Cranioversary

This past week included a day on which, six years ago, I was having a craniotomy, surrounded by love and support and community. We remain grateful for the sustaining caring that is the feature of this entire amazing journey that is the most important, the most enduring and the most meaningful of all. 

I spent that anniversary day out of town working on a project with other people that required full concentration, and though I was aware of the date, I was also immersed in the task without time or inclination to stop and reflect more fully. That alone illustrates the magnitude of the progress I’ve experienced in the years since surgery—more than I could even have imagined two years ago writing the last full update here. That I was able to spend the day deeply engaged in an intellectual project, interacting with a roomful of people, was maybe the best possible way to observe the passage of time. 

Looking back at my last entry, the questions around which I was cycling without resolution have faded away, mostly through lack of interest, as other, more interesting and relevant issues have moved into the foreground.

The best news is that the work I’d started two years ago with Laura Kalman at Studio Helix has been transformative. 

As a quick summary, her original diagnoses were right on the money and we’ve seen amazing and wonderful progress on all fronts: I now have total use of my right arm and my balance is dramatically improved. We’re still working on the odd manifestations here and there. Michael and I resumed dancing together in a strategy Laura suggested as a way to use/recover muscle memory that has been very successful. A cumulative result of all those pieces is that I’m finally losing weight a little at a time and keeping it off. As an unexpected bonus, I no longer have chronic pain in various joints. (I’d always just assumed that the low-level chronic pain I had in hips/knees and occasionally shoulders was just the price of aging. It’s been fantastic to discovery otherwise!) I never get the shooting-pain headaches anymore, as Laura found and exorcised the combination of compensations that were crunching the nerve in my neck that was the source.

Laura and her systems for diagnosis and treatment have been for me, nothing short of miraculous. She combines myofascial manipulation, specific stretches / exercises and strength training. She’s observant and thoughtful and, while keeping the big picture in mind, has systematically helped rebuild / retrain muscle systems that weren’t doing their job anymore or had strange maladaptations from years of compensating for other weaknesses. I’ve gotten to the place that, if she suggested I should be doing my exercises in the middle of the street in front of my house, my first response would be “would that be parallel or perpendicular to the flow of traffic?” Michael shifted his workouts to a Laura-devised system and is stronger, more flexible and more fit than ever—and hasn’t had a bad back spasm since he started. Before that, he was usually disabled for a few days once or twice a year. Finding and working with this thoughtful and smart innovator has been a gift—for both of us. 

To complete the overall update, my phantom self persists with all the same old symptoms and though it still itches now and again, we’ve come to terms with each other. It has become more like a silent familiar than a constant irritant. There are things the new me cannot do any more: c’est la vie, and a good one it is, too. The limitations and deficits of this version of me exist, and as we’ve all adapted to them, acceptance has become easier. So on the actual cranioversary, while I was able to work intensely all day, I did beg off the committee dinner and spend the evening quietly, recharging and preparing for another long day out in the world—followed by travel home through airports. The day after that, I spent at home all day with minimal visual or aural stimulation. And then, the re-set was mostly done and I’m ready for another week starting tomorrow. 

Anniversaries can be bittersweet, with awareness of blessings and losses mingled all together in a strange brew. It wouldn’t be true to say that I don’t feel the losses, because I do. I think if you ask members of our family, they’d say the same. Whether through the passage of time, adjustment, grieving or building a life with more anti-itch elements, the sense of loss just isn’t as acute anymore and doesn’t overshadow a daily appreciation for the wonderful aspects of this current life. Our girls are happy and healthy, Michael and I have each other, and we know the nicest, most wonderful people possible. Six years on, my main thoughts are in the moment and forward. I’m happy and mostly at peace. That’s a lot.