The Beginning of Everything

by Andrea J. Buchanan

  Nociceptive is a word that comes from the Latin nocere, “to harm,” and what it describes is a kind of receptor in a sensory neuron that detects and responds to unpleasant stimuli in the body by sending electrical signals to the central nervous system. We have these kinds of nociceptors all over our bodies, and the electrical signals they send to the spinal cord and brain alert us to possible threats, and to harmful sensations. Think of your fingers touching a hot surface: In an instant, the nociceptive fibers in your skin send the message to your brain that there is danger, and before you can even form the thought, Ouch, this is hot, your hand has already jerked away to safety from that hot place. Those particular fast-acting fibers (called A-delta nociceptor fibers) are large in diameter and have a thick myelin sheath surrounding them, which enables them to conduct nerve impulses more speedily than other fibers. They are the messengers texting your brain with the immediacy of the event, a live Twitter feed of pain. Now think of your fingers after having touched the hot surface: They’re away and out of danger, and the sharp, quick, specific pain of that initial contact is gone; but now you are left with the duller, throbbing, more diffuse and longer-lasting pain of the place where your skin is slightly burned. This kind of pain is brought to you by slower-acting fibers, called C fibers, which are much smaller in diameter and take much longer to communicate messages—rather than Tweeting at your brain with urgency, they are writing a letter and mailing it. These slower, more deliberate C fibers account for about 70 percent of all nociceptive fibers. And the dull, aching pain of headache, as seen in headache disorders—from cluster headaches to spinal CSF leaks—seems to be communicated by these fibers.

  The dura, with its nociceptive fibers, is sensitive to traction, and traction can translate into pain. When I was leaking, when I experienced a headache upon standing, theoretically part of the reason for this was the decrease in my already low intracranial cerebrospinal fluid volume due to the new gravity of being upright, plus the stretching or traction of the dura as it responded to the contents of my skull shifting downward, however slightly. As I’m recovering from this leak, my dura is still hypersensitive, all its nociceptors on high alert, ever at the ready, waiting for the smallest of signals, and so my pain now is from the volume of cerebrospinal fluid reaching full capacity, from the traction on the dura caused by tilting my chin, from the way it is stretched simply by my sitting down. All of this stimuli, which previously, in my non-leaking life, was merely interpreted by my body as stimuli—not danger, not threat, not pain—is now transmitted as signals of peril. My brain is sensitized, my pain pathways are sensitized, and so the pain cycle continues.

  Sensitization is an important component of pain. It is an increased response to stimuli, which results in both increased sensitivity to pain and the experience of previously non-painful things now being experienced as painful. As I recover from my leak, with my sensitized dura, I am painfully sensitive to the pulsation and circulation of spinal fluid as I never have been before, despite the fact that my spinal fluid has been pulsating and circulating my whole life. And while I was leaking, I became sensitized to that pain as well: After a while it took longer and longer for the pain brought on by being upright to subside once I lay flat. My pain was continuous, even in the absence of painful input. This kind of sensitization is in part why techniques like the infusion treatments I had at the headache center are prescribed: Those several days of concentrated exposure to medications, some to constrict blood vessels, some to induce relaxation, all to decrease pain, help to interrupt the pain cycle, to reset things so that these sensitive receptors can recalibrate, and return to their normal levels of sensitivity.

  The main difference between the pain I had while leaking and the pain I have now is that the pain I have now changes over time. It is intermittent, and variable in intensity. I can answer the headache center questionnaire questions like Have you had any headache-free periods? because now that answer, incredibly, is yes. I can quantify the number of headache hours I have each day, because now my headache is not continuous, it is not intractable; it has a cycle to it that is no longer dependent upon whether or not I am standing. The questions of scale that confounded me with my leak headache—On a scale of 0-10, how severe are your headaches? __/10 Mild ones __/10 Severe ones __/10 Average ones—are fathomable now that my headache (singular, unceasing) has become headaches (plural, limited in duration), now that I have moments when my head hurts less than it does in other moments. This is progress, and I note it, tracking each day on an app on my phone, so that eventually I can see that what feels like stasis is in fact an evolution, my pain waxing and waning, ebbing and flowing, my fast and slow nerve fibers recalibrating themselves, until eventually, one day, it might even be gone.

  33

  It’s happened again: I’ve forgotten something crucial—the prophylactic medication, an antidote, a cure—and now we are all at risk. I sit up in bed, but it’s already too late. I can see the laser beams cutting through the ceiling, brilliant sparks penetrating the darkness, and then the poison gas begins seeping in through the floor. Soon the house will shake and collapse upon us. It’s only a matter of time. My throat burns. I clutch at my neck, gagging, choking, as I search fruitlessly on the dresser, the nightstand, for the thing that surely must be there to protect me, the mask or the pill or the whatever it was I was supposed to have prepared in order to save us. But it’s not there, of course it’s not there, nothing’s there, I’ve failed as I always fail, as I’m destined to do every time, and so I run to the hallway, screaming as I throw open my bedroom door, the panic propelling me, my heart a rapid staccato in my throat. I’ve got to get the kids before it’s too late, I’ve got to save them, I’ve got to get them out.

  Suddenly, standing in the harsh light of the hallway, I feel myself beginning to wake up, the pain in the back of my head dawning, and the truth slowly returns to me: There is no disaster. There are no deadly lasers cutting through my roof and destroying my house, no deadly gas flowing through the vents. This is a nightmare. A night terror.

  I’m not in danger; I’m standing halfway down the stairs in the middle of the night, the cats circling my feet, confused and yet hopeful that it might already be food time, my son sleepily calling from his room, “You okay?” I’m shaking, my breath ragged with adrenaline, my mind still half-convinced the terror was real, that it really might be real, while another part of me knows it couldn’t be. “Sorry,” I say. “Nightmare.” I take a few more breaths and return to my bedroom. The lights are on somehow, I must have slapped the wall switch in my panicked run out of the room, and I sink down onto the bed, still shaky, still confused, and finally see the note I left for myself next to my bed before I fell asleep, a message in all caps, written in ballpoint pen thickened to readable status by retracing many times the outline of the letters: “IT’S. NOT. REAL.”

  I see it, I read it, I recognize it as a letter from my waking self to my panicked dreaming self; and yet it seems possible that it’s wrong. Perhaps this is still part of the nightmare. I sit holding the note, reading those three words, trying to convince myself that they’re true, that it was a dream, that none of it was real, until finally it feels believable enough to turn off the lights and lie down again. My pulse races, even while I lie still and try to calm my breathing, but eventually I’m able to fall asleep.

  Leaving myself a note was one of the many things I tried in my attempts to thwart the night terrors. I wrote one that said: “Remember, this is only a dream.” I wrote another that said: “You’re dreaming.” And of course there was the frantic but direct “IT’S. NOT. REAL.” I placed these in various spots near my bed before going to sleep, in the hope that reading them in the midst of a nightmare would help me cut through the panic and bewilderment; but usually I would discover them only after fully waking, the screaming and running and occasionally ankle-twisting midnight anxiety attack already over.

  I tried reciting calming affirmations before going to sleep for the night, lying stil
l and doing the kind of breathing I’d learned years before in ashtanga yoga class, each inhalation and exhalation an audible, strong force in my throat. Everything is fine, I’d tell myself. You’ll go to sleep and sleep all night, you’ll wake up in the morning after a peaceful rest. I tried listening to soothing binaural soundtracks, supposedly calibrated to send your brain into relaxed states through sounds that triggered delta waves, gamma waves, electrical currents designed to induce tranquility. Still, despite my preparations, I would find myself again fending off the inevitable attack, waking up my children, startling the cats, scaring myself as I’d wake up in the process of running out of my room, down the stairs, trying to escape.

  These nighttime episodes are terrifying as they happen, but in retrospect almost embarrassingly obvious. There’s no clever symbolism to my nightmares, no mystery to solve or truth to decode, just the panic and terror of having forgotten something crucial. It’s the panic of things left undone, the terror that my own forgetful, foggy brain has doomed us. The creeping worry that I have damaged my children beyond repair with my divorcing their father, with my malfunctioning brain, with my inability to do the things I have always done for them.

  “Have you experienced this sort of thing before?” my neurologist asked when I’d finally told her about the night terrors, seven months into my CSF leak, before getting patched up at Duke. “Not like this,” I’d said. It’s true that years before, when I’d been on a punishing deadline with a difficult co-worker, I’d had stressful dreams, nightmares about the walls literally closing in—but this is how all my dreams are, even the non-scary ones: overly obvious, no interpretive skills necessary, no insight required. “Huh,” she’d said. “Maybe it could be stress? Are you stressed about something?” For a moment, I’d thought she was joking. “I mean . . .” I’d begun, gesturing at myself, sitting in a neurologist’s office in a headache center at a brain hospital, slumped down in a chair not made for slumping, in an attempt to be as flat as I could possibly be to mitigate the effects of my own brain fluid leaking out of my head. Yes???

  Emi had night terrors when she was three, a moment in time after Nate was born, but before she was able to connect the dots between that event and the stress she felt because of it. Night terrors are common in children, according to the parenting books I read at the time, especially in toddlers. The advice for parents is to stay calm and not try to wake them; to put yourself between them and anything dangerous, but to not attempt to restrain them or hold them, as this may agitate them more. It was unsettling and distressing to have to merely watch her suffer through these episodes, trying to soothe her and reassure her without physically interfering, unable to snap her out of her panic and back to reality. Often, even though her eyes would be open, she would in fact be asleep the whole time. She never had any memory of these nightmares upon waking.

  I did, though; her cries haunted me. Every time she had one of these night terrors, it was the same anguish: She was calling out for her mommy, panicked that she couldn’t find her mommy, that she had lost her mommy. And yet when I would go to her, telling her “Shh, shh, it’s Mommy, I’m here, I’m right here, you didn’t lose me, I’m right here with you,” that would make it worse. Her eyes—wide open, but unseeing—would flash with panic and she would scream, “You’re not my mommy, I need my real mommy.” In the daytime, I would understand this as her way of processing the grief of losing her mommy to this new interloper of a baby brother, her instinctive sadness and fear that our relationship would change. Her “real” mommy was a mommy only to her, her and her alone, and that’s what she was desperately searching for in the middle of the night, that’s the loss she was grieving: the loss of having me all to herself. But in the dark, in the middle of the night, in her room, trying to comfort her, I worried maybe she was onto something. Perhaps she had seen right through me, perhaps her wild eyes had seen the truth: I wasn’t a real mother, I was a faker; I was ambivalent, and my ambivalence was causing me to fail her.

  Her night terrors subsided after several months, as the parenting books said they would, and did not return. She had the occasional nightmare from time to time, but nothing like the awake-but-asleep episodes she’d had while adjusting to Nate’s existence, and the question of whether or not I was a real enough mother for her was put to rest, for the time being.

  Unlike Emi, I remembered my night-terror episodes in my waking hours, and they struck me as being a comically exaggerated shadow version of a process that unfolded in my daily life, as I lay in bed, trying to retrace my steps and find my way back to the moment that started it all. Just like in the nightmares, which were only slight variations on the same theme every night, I kept finding myself endlessly revisiting the series of events that had resulted in my ending up where I was. If I hadn’t gotten sick. If I hadn’t left the house. If I hadn’t coughed. No matter how many ways I tried to think about it, I was inevitably led to the same conclusion, which was that it didn’t matter how I thought about it or how I understood it: It had happened. Knowing exactly how or why wouldn’t help me, wouldn’t heal the tear in my dura, wouldn’t stop the leak or prevent the pain or undo the damage done. And yet I’d find myself returning there in my thoughts, such as they were, the same way I’d find myself awake in the night, on the landing or the stairs or in my bathroom, my chest tight with fear, battling against the inevitable nocturnal disaster.

  I continued my pre-bedtime self-talk. I took the advice of my sister Jessie, who recommended setting an alarm to wake myself just before I slipped into the sleep phase that somehow sparked the nightmare scenarios for me, usually within a few hours of my falling asleep for the night. I wrote more notes to myself, I listened to calming music and guided meditation, I fell asleep to peaceful, tranquil sounds. I tried, variously and with little success, Benadryl, trazodone, melatonin, lorazepam, alcohol.

  I listened to a podcast one night where a man shared his story of surviving a terrible accident and how he coped with the night terrors that were part of his PTSD. He said that instead of replaying the story of the accident for himself, he began to try to rewrite it. Before going to sleep, he’d talk himself through what happened—except instead of the tragic ending, he would turn the events of the day that changed his life into just a regular, boring, ordinary day. He still woke up confronting the reality of being partially paralyzed—that would never change; but the night terrors stopped holding him in their grip.

  This made sense to me, this idea of changing the narrative, the conscious brain coming up with new options for the unconscious brain to mull overnight. The stories we tell ourselves are important, especially the ones that aren’t true. The fairy tales, with magic and suffering and improbable yet happy endings; the fantasies of things we want to do; the endless replays of things we wish we hadn’t. Sometimes the stories we tell ourselves are healing ones, stories that reframe the narrative, exploring it from an oblique place when the full story may be too much for us to bear. Sometimes the stories we tell ourselves allow us to make sense of things through repetition, the way Emi told and retold herself and me the story of Nate’s accident, each retelling an act to free herself from the trauma of what she’d witnessed. But sometimes the most powerful stories we tell ourselves about ourselves are the bad ones, the ones we can’t stop thinking about, the ones that wound us: the ones that say, I’m always like this, this is always what happens, this is what I do, I always lose or fail or miss out or get left out or left behind. Much of my parenting work involves talking my children through these stories, helping them learn to reframe them, to hear themselves when they say these stories out loud, asking them to examine those stories and question the reliability of the narrator to find out: What’s the payoff for believing this particular story right now? What’s in it for me to believe the story I’m telling myself?

  Nate calls this “telling myself the bad story,” and we work together to catch that kind of self-talk when it happens, attempting to recognize the moment when we are caught in the process
of telling ourselves a story about what’s happening in order to avoid the real story of what’s happening, and then attempting to refrain from allowing ourselves to get lost in that story. It’s tricky, and it doesn’t always work; but even if they continue to listen to the story they’ve been telling themselves, the process of acknowledging for even a moment that it is, in fact, just one story, one way out of an infinite number of ways of interpreting things, helps them free themselves, just a little, from becoming stuck in the narrative.

  It’s not lost on me that my daytime work with them was work I continued to struggle with myself in the night. Why did I seem to need to keep telling myself this same story? What was my payoff? What was I getting from this nightly narrative of blame, guilt, and fear, other than an extra helping of more blame, guilt, and fear? Why did I need to keep telling myself the bad story?

  Before any of this, before the fever, before the ill-advised decision to leave the house and go out for breakfast, before the cough, I was in therapy, trying to come to grips with the realization that my marriage was over, that the thing I least wanted to confront was in fact the thing I must confront. Even though my therapist had known me for almost fifteen years at that point, for almost the entire length of my marriage, she asked me to tell her the origin story of my marriage and how I got to where I was then, at the point of its dissolution.