Chronic pain has offered me my last rebirth, my last reinvention. My career in mutation ceased the day it came filing into my life, like an occupation, insidious and absolute, or like the musical version, whimsy thinly masking tragedy. It’s theater of the absurd, No Exit.
Perhaps I needed someone or something to come in and seal up every conceivable escape route, but I would have preferred a slightly less merciless tactic. But war is not diplomatic.
I had not thought of it in terms of agency, of freedom, until a recent therapy session. Perhaps I have lived with it too long, but it struck me when she said I must feel a sense of loss of freedom. And of course it is a loss of many things, but freedom is perhaps a factor in all of the things one loses in the interminable insistence of chronic pain.
The freedoms lost are both predictably significant and tragically fundamental. Take, for example, the ability to merely sit and think, to enjoy stasis, to stare blankly, to slip into the void of time and thought, lost; It is not the freedom of planning a vacation without the fear of whether you will feel well enough to even make it through the plane ride, let alone enjoy the trip; it’s not losing the ability to sleep through the night, the joy of having sex without fear of pain or without knowing that pain will overcome you when it’s over; the fear of losing a job and your financial security and future; or the dignity of keeping your health private or the sheer loss of the beauty of shared struggles with others about health issues that arise and pass dutifully or at least subside back into the realm of “normal”, of humanly manageable, of briefly mentioned and avoidable, of doctor curable and understandable. No, it’s not all these things that you think of when you are in the jungle of the worst pain; the tragedy of epic proportion, the grave digger of the chronic pain sufferer, is simply the loss of the ability to be alone with your thoughts in the precariousness of the only reality that we know. All else could be lost truly, for just this simple freedom.
I wish I could write more helpful stuff about all this and write a book. I would say that this is not a book that will tell you how to manage your chronic illness. My intention would not be to make people feel like it’s going to be okay or that chronic pain is here to save your life. That you are special or that it’s part of some plan or that you are just overlooking the potential. Or that, god forbid, suffering is holy. Let’s be real, it’s only manageable when the pain gives you some reprieve. Otherwise, it’s hell on earth. It’s cruel and it’s simply untenable. I wish there was someone to blame – an enemy, an evil entity to wage war with but there’s simply not. There may be some, and the medical community is in part culpable, but there is no one pushing the button, sticking needles in me, and I can’t imagine a God this cruel.