When I wake at 4 a.m., I am pinned to my bed.
A skewer is piercing my temples, slicing my brain behind my eyes, nailing me into the mattress. I am a formaldehyde frog pinned to a tray for a sixth-grade science project. Dissected. I can’t feel the rest of my body over the intensity of this headache. The only part of my body that exists is the tissue of my brain, burning and pulsing.
I’m lost in the moment as well: there has never been and never will be a time in which I don’t feel this anguish. This relentless pain rouses feelings of helplessness and desperation that seem endless. I feel those emotions with every bit as much intensity as I did at the onset of my headache twelve years ago.
When I was an 18-year-old freshman cadet at the Air Force Academy dedicated to my dream of becoming a pilot, I developed meningitis. Attempting to discover the type of meningitis I suffered, the doctor in the intensive care unit asked if I was sexually active. I lied. I didn’t tell the doctor I’d been raped. I didn’t tell him I had vaginal symptoms of a sexually transmitted disease. I felt too much shame about what the senior did to me in the library two weeks earlier to tell the truth. I thought the doctor would call me a slut, just as I believed I was.
I may not have given my doctors the clues they needed to identify the virus, but my lab results did. Even though my spinal tap confirmed the presence of herpes, my neurologist, an Air Force Lieutenant Colonel and Air Force Academy graduate, chose not to treat my infection with the correct anti-viral drug. He released me after five days in the ICU, though I spent spent the next days, weeks, months, and years, in and out of the hospital.
Four months after becoming ill, my commander intervened on my behalf and pulled rank to force the neurologist to help me. By that time, the virus from my perpetrator had begun to eat its way through my temporal lobe.
A few of the dozen neurologists I have seen in the intervening years have told me that most likely my continuing headache is the result of immense scar tissue riddling the lining around my brain. Others say it is because I was too sick for too long. My nerves fired and fired and fired in an attempt to warn me that I needed medical intervention, and now, even though I don’t need medical help any longer, they don’t realize the infection is gone and their job is complete.
My nervous system is as stuck in the ICU as my mind.
Even now, lying in pain in my bedroom at 4 a.m., I still see the orange glow of the machines in the darkened ICU, the wires and tubes tangled across my body that strap me to the bed. I feel the heaviness of my body, the shock of the intensity of the pain, the desolate loneliness, the burden of the shame that kept me silent. Then I feel the stubby carpet under my naked bottom as if I’m restrained to the floor of the Air Force Academy library. Even though my eyes are closed, I see my rapist’s hostile, brown eyes. I feel his knee jamming into my thigh.
How many times have my bad-headache days taken me through this regression, immersing me in the memories of the hospital and the rape? Every fucking time.
I remind myself I am no longer in that hell: I am safe. I am home. I have a partner next to me. I have friends and family who love and support me. I am safe. I am in my home. I have a partner next to me. I have friends and family who love and support me. I am safe…
My husband Nick’s deep and regular breaths confirm his steady presence. I don’t wake him even though he wouldn’t be angry if I did. These moments of increased pain and relived trauma happen too often for that. Unlike me, he needs to be rested and alert at work in a few hours. I can’t let my chronic pain ruin his career, too.
My pain isn’t always this severe. On a good day, it is a dull throb in my temples, an echo of the infection and trauma, quiet enough that sometimes I forget it. My monstrous days come perhaps once a week, but often far more. On those days even the smallest of tasks like going to the grocery store feel immense and overwhelming, and my irritability flares at the most minor of aggravations like being stopped for a red traffic light.
Sometimes there is no discernible cause for the worsened headache, but I make my way through my checklist nevertheless:
Have I had enough to eat? Yes, I had chicken and risotto last night.
Have I been eating too much wheat? No, I haven’t had any in two days.
Have I had enough to sleep? Eight hours the last three nights, ten on Monday.
Have I had enough endorphin-producing exercise this week? I’ve run two of the last four days.
Have I had enough water? No, I didn’t drink enough last night. This squeezing I feel is from a salt and fluid imbalance that makes the pain worse when my head isn’t elevated. Experience has taught me that to feel better from this brand of headache, I need to sit up. But I can’t imagine mustering the strength to unpin my head from my pillow.
I wiggle my toes. My therapist has coached me again and again in these bad moments to focus my attention on a spot in my body that feels okay. My toes are the furthest from the throbbing, so I choose them. Sometimes I wear toe socks, gloves for my feet that wrap each little digit in a feeling of comfort and safety.
Once I feel connected to my toes, I move my legs. Inches at first, then I scoot them towards the edge of the bed.
Years ago, Nick and I purchased this house because the placement of a master bedroom in the basement would provide a cool, dark place for me to stay relaxed during my bad days. But in this moment, the most comfortable place for me to rest with my head elevated will be in my home office two floors above, so so far away.
I coach myself to make the journey one move at a time. I scoot off the mattress and hoist my heavy head off the pillow.
My bedroom door creaks when I open it, but it doesn’t wake Nick. I cling to the banister for support as I take my first two steps. Then pause. I focus on holding myself upright so that the pain doesn’t push me back from where I came. I take one more step.
Half way to my office, I stop in the kitchen to sip a glass of water. I take it with me as I climb the remaining steps to the loft.
I no longer seek treatment from my doctors. I’ve exhausted the resources of five different hospitals and countless practitioners in infectious disease, neurology, pain management, chiropractic care, acupuncture, massage therapy, psychiatry. I’ve tolerated more than 150 days in hospitals and 10 diagnostic spinal taps. I’ve tried so many medications I’ve written them all down to keep them straight; the list of seizure medications, antidepressants, beta blockers, narcotics, migraine drugs fill three pages. I’ve tried multiple series of thirty-something Botox shots to deaden the muscles in my face and scalp. I’ve had my cranial nerves that emerge from the bottom of my skull frozen like a piece of meat to try to turn them off. I’ve allowed a chiropractor to inflate balloons inside my nostrils – repeatedly – in an attempt to manipulate the bones in my skull. I’ve had surgeries to install a peripheral nerve stimulator which sends low-level electrical charge to wires implanted under my skin. My neck, even in this moment, feels prickly and tingly from the current. Of all the attempts at fixing my headache, the nerve stimulator is the only that achieved even partial success. With it, I have far fewer bad days. But the years of pills, needles, tests, and operations, left me fat, bald, nauseous, dizzy, depressed, and deadened. My chronic headache prevented me from living the life I wanted, but its treatments became an even greater liability.
Each time I embarked on a new treatment regime, I dared to hope, bolstered by my doctors’ confidences. Each time these treatments failed, disappointment spun me into a depression. After a while, somewhere between years three and seven of my chronic headache, my faith in new options began to dwindle. Eventually, I gave up altogether. It’s easier to spare myself the disappointment than to allow myself to feel optimism.
Hope became a four-letter word.
My doctors tell me I’m lucky. Of those who suffer an untreated herpetic infection in their brains, seven of ten patients die. Most of the remaining patients lose so much functioning they cannot live independently. My chronic headache and slight cognitive deficits—the trouble I have holding numbers and concepts in my mind or recalling words—are a small price to pay for my life, my doctors say.
Finally, I’m in my office upstairs, after the long haul up two flights of stairs. In the glow of my computer monitors, I see that my index finger is pruny and raw, red bite marks dig into my skin just above the top knuckle. I don’t know how many hours I have fitfully slept through this worsened headache, biting myself.
I lower myself into my LuvSac, a giant beanbag-like cushion. Its guts are softer, less crunchy, than a typical beanbag and the fern-green micro suede feels like velvet. Here I can position myself halfway between sitting and lying, and the LuvSac’s puffy sides will hold my body. It makes me feel safe in the same way as my toe socks. The name—LuvSac—implies that it is meant for people to snuggle. But the only love affair happening in it is with myself. I’ve heard there are others with indomitable headaches, but there isn’t anyone who can relieve this burden for me. There isn’t anyone who experiences my relentless pain, except for the brief flash of evidence on my face or in my posture or in the way my partner can sometimes feel the pulsing when he places his hand to my temple. I am the only one who can give my body the comfort it needs.
I cover myself to my neck with a white, fleece blanket, so soft it still feels new. I hold a stuffed bear under the crook of my arm, even though I’m thirty. Its fur calms and distracts me. Now I feel connected to my fingertips as well as my toes, these parts of my body that aren’t throbbing.
I look up at the pictures covering the wall in front of me that I recently framed for moments just like this one. It isn’t until I see them that I remember my other life enjoyed on days of less pain. In one of the pictures, I’m crossing a finish line in the mountainous trails of Colorado’s western slope, completing my first 50-mile ultra-marathon. A small cluster of supporters cheer and clap, and the race director holds up my finisher’s medal. In all of the rest, I’m standing on top of my favorite Colorado peaks with various friends. My favorite part of each of those pictures: the sky, sometimes decorated with clouds, sometimes pure and intensely blue.
An acquaintance once commented on my fanatically active lifestyle that I must be running from something.
I am. My pain.
Several years ago, when I quit my doctor-and-hospital, hope-and-despair routine, I sought the only natural medicine I knew: the mountains.
I carried my headache with me on each of the journeys in the pictures. I climbed those peaks seeking the deep blue sky above as if becoming a part of it would elevate me from this misery. It did. When I stood on those mountains, I felt in my bones that I was no longer hostage to the chronic pain and the trauma of its origin. When I look up at those pictures, at my now-muscular build and my genuine smile, I remember those moments of strength. I remember I’m not locked in my past. The blue sky I stand among in the pictures proves I am no longer pinned to the floor of the Air Force Academy library or strapped to the bed in the intensive care unit.
This throbbing will fade back into a dull ache, if not today, then tomorrow.
Just next to the pictures in my office, there is a narrow, tall window. When the sun rises in a few hours, I’ll be able to see the cloudless, deep Colorado-blue sky through the leaves of my oak tree. Then, I won’t feel as if I’m anywhere but here in the present.
Blue is the color of hope.