Excerpt from Always Looking Up
This morning Tracy is already up, dealing out breakfasts and readying the kids for school. I blindly fumble a plastic vial from the nightstand, dry-swallow a couple of pills, and then fall immediately into the first series of actions that, while largely automatic, demand a practiced determination. I swing my legs around to the side of the bed, and the instant my feet hit the floor, the two of them are in an argument. A condition called "dystonia," a regular complement to Parkinson's, cramps my feet severely and curls them inward, pressing my ankles toward the floor and the soles of my feet toward each other as though they were about to close together in prayer. I snake my right foot out toward the edge of the rug and toe-hook one of my hard leather loafers. I force my foot into the shoe, repeat the process with the left, and then cautiously stand up. Chastened by the unyielding confines of the leather, my feet begin to behave themselves. The spasms have stopped, but the aching will persist for the next twenty minutes or so.
At the turn from our bedroom into the hallway, there is an old full-length mirror in a wooden frame. I can't help but catch a glimpse of myself as I pass. Turning fully toward the glass, I consider what I see. This reflected version of myself, wet, shaking, rumpled, pinched, and slightly stooped, would be alarming were it not for the self-satisfied expression pasted across my face. I would ask the obvious question, "What are you smiling about?," but I already know the answer: "It just gets better from here."
As the title for this new book, Always Looking Up works on a couple of levels. First off—let's just get this one out of the way—it's a short joke. At a fraction of an inch under five-foot-five, much of my interaction with the world and the people in it has required that I tilt my head backward and direct my gaze upward. However, this isn't a manifesto about the hardships of the vertically challenged. Frankly, my height or lack thereof never bothered me much. Although there's no doubt that it's contributed to a certain mental toughness. I've made the most of the head start one gains from being underestimated. And that's more to the point of it—Always Looking Up alludes to an emotional, psychological, intellectual, and spiritual outlook that has served me throughout my life and, perhaps, even saved me throughout my life with Parkinson's. It's not that I don't feel the aching pain of loss. Physical strength, spontaneity, physical balance, manual dexterity, the freedom to do the work I want to do when I want to do it, the confidence that I can always be there for my family when they need me—all of these have been, if not completely lost to Parkinson's, at least drastically compromised.
The answer had very little to do with "protection" and everything to do with perspective. The only unavailable choice was whether or not to have Parkinson's. Everything else was up to me. I could concentrate on the loss—rush in with whatever stopgap measures my ego could manufacture. I could rely on my old friend from the '90s, denial. Or I could just get on with my life and see if maybe those holes started filling in themselves. Over the last 10 years, they have, in the most amazing ways.
Together they form a bulwark against the ravages of Parkinson's disease. My identity has so much to do with my ability to self-express, to assert my creativity and productive worth (work), my rights and the rights of whatever communities I'm a part of and therefore responsible to (politics), my freedom to seek spiritual purpose (faith) and to explore the complex bonds I share with those I love most (family) and without whom I would have long since succumbed to darker forces.
For everything this disease has taken, something with greater value has been given—sometimes just a marker that points me in a new direction that I might not otherwise have traveled. So, sure, it may be one step forward and two steps back, but after a time with Parkinson's, I've learned that what is important is making that one step count; always looking up.
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