I have had a headache nearly every day since the age of nineteen. Some days it is a dull ache that starts in my neck or shoulder blades and slowly amplifies until that spot is sore to even the slightest touch. Some days it comes roaring in the middle of the night, intruding in my dreams so much so that I am awakened as if by a nightmare. Other days it bores into my skull like a power drill that has suddenly become actuated, exploring its potential to perforate the inner folds of my brain. And then there are the glorious, beautiful days in which the headache lies dormant, and I forget all over again what it is to feel pain.
I have tried everything: acupuncture, Ayurveda, biofeedback, massage, dietary restriction (no coffee! no chocolate! no onions!), yoga, and every medication on the market.
My mother and my husband, most of all, have carried me through this. They have massaged me, held me, brought me hot towels for my head, and beared witness to my tears of frustration more times than any of us would wish to count. My best friends know about my condition, because I turn to them for help – to pick up my medicine, to watch the kids or take them to one of their after school activities. I have even let my children see me lie down with a hot pack on my head, even though for a long time I tried to hide it from them, afraid that it would darken the innocence of their young lives. I realized however, that perhaps the more important lesson was to show them that everyone experiences pain, and that our strength does not lie in denial or the ruse of perfection. And yet, for some reason, that lesson is completely lost on me in every other arena of my life.
I learned at an early age to appear to be present despite the pain. I go to social events and smile and laugh with my friends and acquaintances because I want to be with them, I want to hear what they have been up to, to dance, to smile at the kids as they play together. But then, when there is a moment, I break away and hold my temples, and pray that the pain subsides. I pick up the kids from school, I give them snacks to nourish those little bodies that have been busy all morning learning and playing and sitting up straight at their desks. I take them to their classes and smile in encouragement, just telling myself to hold on long enough to get home to my husband, whose presence is like a balm to my pain. Two summers ago I taught a three hour class with a full blown migraine and then collapsed in tears on a bench outside the classroom once I knew that all the students were gone.
I make plans as if I’ve never had a day of pain in my life. I will say yes to every social event, hell, even plan them without a moment’s pause. I will accept every class that is offered to me as if the only calculation at hand is that of childcare. I will stay in office hours as long as my students need me to, I will meet every one of my dear former students who so lovingly come to visit. I will apply to conferences, I will accept editing jobs for no pay, I will volunteer to host playdates at my house, I will promise the children we will go here and there, as if I was the healthiest person on the planet.
I have learned to deny the perpetual nature of this pain as if my life depended on it. And in a way, my life does. At the age of twenty-five, I went to see an esteemed neurologist who told me in the most blunt manner possible that unless I took drastic measures like dropping out of graduate school, I would be depressed and addicted to pain killers by the age of thirty. Needless to say I threw away the bottle of Vioxx that she then proceeded to prescribe to me. I came home that day completely deflated, but simultaneously determined that in spite of – or perhaps to spite – this pain that seeks to destroy me I will live the best version of my life and pursue my ambitions unflinchingly. Instead of being depressed by the age of thirty, I had a beautiful baby girl and a Ph.D.
When our loved ones have chronic pain that cannot be treated by any outside source, we often implicitly task them with the work of getting better on their own because we can’t bear to see their pain, and because inevitably, their pain is a burden we share with them in one way or another. We ask them what they did to cause the pain: did they eat something they weren’t supposed to? Did they work out too hard or too little? Did they take on too much at work? Did they let themselves get too stressed out? I know that I have been guilty of this with people in my life whose pain I can’t bear to witness anymore. In my own case, I know that everyone tells me to take on less, to think about my capabilities before saying yes to everything and everyone, to work less, to scale back my ambitions. I recognize that this is a completely pragmatic set of demands. And yet, for me, following this advice would feel like my pain, rather than any other of my characteristics, would shape who I am.
When people with chronic pain take on things that will almost certainly result in the elevation of their pain, it may feel like they have lost all capacity to reason, or that they are almost selfishly in denial. But in actuality, it may be that despite the certainty of future pain, they do so as a way to shore up their own sense of being alive in the present. It’s the most irrational and yet paramount brand of optimism. An optimism whose value increases each time it is bombarded with the harsh reality of its own futility. Almost every quarter a student comes to ask how I can be so positive despite the dire quality of what we learn about in class. I have had many privileges in my life – being cisgendered, straight, middle-class, brown but not covered, gender normative among them – that have shielded me from much of the oppression about which I teach and against which I fight. And yet even for me, optimism has become a survival strategy against this unbearable pain that was predicted to rob me of the overriding sense of joy I feel in this life. I’m not speaking of optimism as a socially enforced mode of denial but rather the optimism of pursuing everything that makes me a fuller person with the caveat that I may fail, that I may find myself in greater pain, that I may even show that pain to the world.
I’m not quite sure what made me write this today. Perhaps it’s hearing the children sing “Let it Go” in their sweet little voices around the house nonstop. Or, perhaps it is the hope that someone else who is living with chronic pain may read this and find some solidarity if not solace. Perhaps it is the hope that if you love someone who lives with pain everyday of their life you will recognize that when they tell you of their pain, or cancel plans with you, it is because their trust in you is so strong that they are making themselves vulnerable. And that you will respond by supporting them in all the lofty goals they may express the very next day, because you know that this is what makes them who they are, not the pain.