We rely on metaphors and similes to describe our illness to others. They are necessary even as they are so often imprisoning. But lately I've been struggling with the figures by which I am able to explain to myself the myriad ways in which my illness has rewired my life.
At times I think of it as something like a car accident, so unexpected was its arrival and so suddenly did I find myself transformed and disfigured—at least internally—by the damage. But there is no moment of collision I can isolate, no memory of oncoming headlights, no collapsing of time and space as my body braced for impact. There was only a common virus of the kind I have experienced hundreds of times in my immune-compromised life, and then, in its wake, something new awakening in my nervous system.
I did not see it coming, but I also did not see its strike. One day I could not run even a few steps. The next day I fell on my face walking up stairs.
The analogy that ultimately feels more accurate to me is that I am like Rip van Winkle. After all, like Rip, I awoke one day to find myself decades older, as if overnight. Of course, unlike Rip, the world did not age with me, and as a result I have no stories by which to entertain the populace. I aged a generation in the course of a night only to find the rest of the world just as I left it.
Still the analogy is worth holding on to, if only because I find it somewhat comforting. And in truth, much of what I am now experiencing—mobility problems, cognitive and memory challenges, slowing reflexes, extreme fatigue, aches and pains throughout my body—is the lot of all fortunate to experience old age. The fact that I am, biologically at least, in the heart of middle-age in some sense counts for little. I am an old man in a not-yet-old man's body, and when I think of my disease in these terms I feel more at peace with what has happened. I am a time traveler.
Not the most gifted of time travelers, it is true, in that I alone managed to age while all around me stayed the same (or grew, to my rheumy eyes, younger). But perhaps somewhere in this time travel I will yet discover a story to be told, something of value I can bring back which will make it all worth it.
Of course, the downside of thinking of what has happened to me in terms of Rip van Winkle is that I must confront the very real possibility of being an old man with half a career still to navigate. There are few careers, after all, that eagerly accommodate the infirmities of old age. One might think that mine—with its intellectual and political interest in disability—would be an ideal place to grow old before one's time, and no doubt is better than most.
But for all the rhetoric to the contrary, academia is in fact deeply invested in the neurotypical—or better put, the neuro-enhanced. The terms we deploy at promotion and tenure meetings make this clear: a successful academic is "productive," "active," "networked," "sharp," "tireless." In the Humanities especially, we eschew collaboration for individuality, with all the familiar rhetorics—privileging those who "stage interventions," "pioneer" new fields of inquiry or "build" new programs.
For over 20 years as a professor, I was the epitome of this nervous system. All those adjectives that gather around the tenure files of the successful scholar adorned my own professional façade. I sparked and sparkled, networked and rewired, tirelessly, actively, productively.
Now, with 20 years to go before I can reasonably afford to retire, I am an old man. I am able to find 2-3 hours of focused work time each day. Where once I was "networked" now I am short-circuiting, watching professional bridges collapse faster than I can hope to repair them. Where once I was a sharp I now find myself grasping for words in conversation and struggling to make my fingers hit the right keys on my laptop.
Of course, all academics know what is the opposite of the "productive," "active" scholar. For those no longer neuro-exceptional there is no middle-ground, so safe-landing in neurotypicality. One is "deadwood." That most damning of academic insults is particular charged for me, as the analogy that comes to mind most vividly when describing the challenges of moving my legs is that they so often feel like, well, dead wood.
No, there will be no welcome for me among my peers such as greeted Rip upon his miraculous time travel. It would probably be best if I kept searching for new metaphors, both private and public.