A pressure. A presence.
Black and warm, like a coal moving backward,
entropy in regression: heating up.
Become an ember.
To become a blaze.
I don’t often consider myself a sickly or weak person. By conventional or Western standards, I’m not; each physical I’ve had for the past ten years has turned up normal. Since I was about 17, however, I’ve gotten headaches. Blinding, incapacitating things. What began as single or paired episodes in my late teens and early twenties became, by the time I graduated college, a regular cycle of headaches that no amount of Advil or Excedrine could kill. I’ve been in emergency rooms for them, incoherent with pain, only to be told I had “migraines,” despite the fact that no migraine treatments worked. It wasn’t until my sister, who had the exact same symptoms, was diagnosed with cluster headaches that I also learned what was accompanying me through my adult life. Not migraines.
These headaches are terrible. According to a number of sources and judging by my own experience, cluster headaches are the worst pain imaginable.
Terrible and beautiful, though. Rilke, who yoked the terrible to the sacred to the beautiful, had it right. The pain is like a flower, among other things. Something that emerges from a seed, puts down a few slender roots, releases an insistent, strong stem, and then pushes forward and back into the substance of the brain, creating a vine of sensation that, like anything that grows and lives, changes continuously. If you handed me a translucent model of my skull and brain, I could track for you, with great precision, exactly where the pain was each and every moment. There is nothing vague about it. It is like having another entity in my head, with its own boundaries. When the pain begins to peak, it’s the same as a bloom unfurling. A black-and-purple, like a burnt bruise, maybe streaked with an rusty iron-red bloom. It flings itself out broadly over my left temple, always my left eye. Like a perfume, secondary symptoms emerge, the drooping eyelid, the unstoppable tearing, the runny nose, the inability to withstand strong light, rooms too hot or too cold, or noise of any kind, the swelling that takes over half my face, the nausea and heaving that turns everything from my diaphragm to my esophagus into a long sack of knives, inside-out; the roots of the pain, good and strong, stiffen my neck and shoulders into rigid cords.
If I could ask someone to paint these headaches, I would ask Hieronymus Bosch, channeling Georgia O’Keefe, and working with Mark Rothko’s palette and technique. Something grotesque but suffused in both color and form, fantastic and yet imbedded in the ordinary; sublime, too, but grounded in our physical world.
The pain terrifies me, I tell you. When it begins, it stays for its own season. It cannot be reasoned with, cannot be anticipated nor managed. It puts forth bloom after bloom until finally, exhausted, it recedes and goes dormant again. I become little more than a field for this thing, and I spend the entire cycle, about a month, with attacks coming anywhere from twice to five times a week, in tense anticipation of the next attack, attendant to the smallest shift in the barrage of sensations in my head and body.
One thing my headaches have taught me is not to expect a pain-free existence. Pain is not, contrary to the popular axioms of unearthly good health and prolonged youth our contemporary culture spouts, a failure of the body or personality. It simply is, as much as appetite or curiousity. Pain is simply part of having a body, and isn’t something to get overly worked up about: it is not abnormal in and of itself. It signals something is out of balance in the body, but it is merely that: a signal. The body is full of them. To have a body is to have a switchboard for one’s vehicle, for the duration of conscious life. Pain’s part of the deal.
I would like others to acknowledge, as I have to, the existence of pain and the experience of it. I am not “better” because I’m not in the middle of an attack; I am not “worse” because I am. The tide of pain/non-pain is simply the natural cycle my body lives with and through. To afix the idea of “well” and “ill” to either end of that cycle misses the point of it completely. I shy away from affirming I’m “well again” simply because a single headache has calmed down. I can’t overlook the overwhelming and far more important context of any one attack in the cycle of this disease, and I would ask others to do the same. I don’t live like an invalid, babying myself when it’s unnecessary. I move when I can move, and do what I can do; and when an attack comes and I can’t move or function, then I retreat. People seem disappointed when I don’t “get better” and have another attack, as if it were a moral failing of mine; they also can’t forgive me my activity between proximate attacks, as if I’m asking for another headache. I am neither of the two extremes, frail or foolhardy. I just know that I have to function when I can, because I don’t know when it is I won’t be able to again. That’s all.
These attacks leave no physical mark. They are exquisite! Can you think of anything else that conveys its own weight, form, color, and existence with such precision and eloquence, and then manages to exit the physical body as if it had never been? There should be a bloodbath, I’m telling you. Open-brain, open-heart, open-marrow-and-slice-all-the-veins-and-capillaries kind of stuff. I have had my innards churned inside out by it, have beaten at my head in futility trying to drive the thing away, have sensed its every living motion like a mother feeling her baby move within her, and it leaves no physical mark!
There are times when I can let go of the terror having an attack induces and just feel what’s happening, raw sensation without the overlay of emotional or intellectual response. And what happens in my brain and body is beautiful. Terrifying, and beautiful.
Do I pray when I’m in pain? Yes, before thinking too becomes too painful; I usually recite the four immeasurables. Has this disease taught me empathy? Yes, though I hope that most of us can learn empathy without this kind of suffering. But what I am grateful for, truly, is how pain is ever-present in my life, something I can’t ignore. The impatience this world has with discomfort, our modern unwillingness to look straight at pain and just accept it as a fact of living, like changes in the seasons or the digestion of a meal: I am less impatient with the limitations of the body and more willing to look directly at things, as a result of this pain. I take a day less for granted, when that day is without pain, than I did when I was younger (and relatively more pain-free). I could quote a well-known Buddhist teaching that sums up what these headaches have taught me, but it’s a little cliche and besides, I expect you all will figure it out for yourselves without me providing a spoiler.
Jeder Engel ist schrecklich. Und dennoch, weh mir,
ansing ich euch, fast tödliche Vögel der Seele,
wissend um euch. …