At the age of 31, I learned that the body is irrevocably tied to others. After violence from two young men, my health rapidly deteriorated. Migraines became more frequent and eventually chronic. Within three years, I had become too disabled to work.
Our culture tells us that health and weight signal personal virtue. That “will power” and grit are all we need to be healthy. That if you eat the right foods and do the right exercises with all the devotion of a religious supplicant, then you will be strong and beautiful and healthy. Because no one determines your fate but yourself.
These are all lies.
* * *
The truth is my descent into chronic illness was a long time coming. My mother’s violent rages overshadow my earliest memories. The Mormon church taught me that demons stalked me, waiting to strike, hoping I would fall to Satan. I came to believe in ghosts, especially banshees. My sleep was disrupted by night terrors where my family, my neighbors, my friends all turned into skeletons and hunted me. I developed chronic insomnia. All before I was seven. And it only got worse from there.
Too many of us experience violence and abuse as children. And carrying this history that has left us with a perverse misunderstanding of human relationships, such children often grow into adults who believe that people who hit us or mock us or threaten us are justified. It’s fine, we tell ourselves. He didn’t mean it. Or I deserved it. Or I know she loves me, so it’s okay. This is all part of the normal ups and downs of relationships.
The truth is I just didn’t know any better.
* * *
The problem by this point was that my stress response was off-kilter. The bodies of long-term abuse survivors cannot produce cortisol at the appropriate levels. It flooded my system when I was young, and my body had adapted. The brains of child trauma survivors develop differently, and those differences are detectable in MRIs. We seem so calm because our brains have learned to be. Just as prey release hormones that produce calm and euphoria while in the predator’s jaws, the bodies and brains of child abuse survivors have learned to be calm. Too calm.
In the popular imagination, we picture abuse survivors as shrieking, shivering messes who crumble to their knees and weep, or else smash vases against walls and scream in rage. But this is only when something triggers a PTSD flashback, only when we are flooded with memory and terror and must hold up the rage and grief to shield ourselves against the past.
The rest of the time, our cortisol levels are too low. And our seeming indifference to stress is mistaken for peace or calm or resignation or weakness. When in fact, it is none of those things. It is an old habit. A safeguard against abusers who are long gone, or who exist now in other bodies, with other names and faces.
Deep in my limbic system, I am still telling myself, Stay very, very still, and maybe he won’t see you. Maybe this time, it will turn out all right.
* * *
A growing body of research points to an intersection between chronic illness and trauma, especially in childhood. Not everyone with chronic illness has experienced trauma. And not everyone who experiences trauma develops chronic illness. But the American Migraine Foundation reports a strong correlation between chronic headache and child abuse. The low cortisol levels in adulthood that result from constant high cortisol during the brain’s formative years also contribute to inflammation, which correlates with heart disease, migraine, and (some research suggests) fibromyalgia, among others.
Unfortunately, for many of these chronic diseases, there is no cure. Even effective treatments can be hard to come by. In fact, for migraine, the first preventive drug ever designed specifically for the disease was only approved by the FDA just last year. In 2018.
And the best prevention would be a societal one: the end of child abuse. But no one wants to talk about that.
* * *
So, for many of us child abuse survivors, this means another part-time job: managing the disease that our abusers gifted to us. When I get up, the first thing I do before breakfast is log my sleep and check risk factors for the day: temperature, humidity, atmospheric pressure.
I observe a strict schedule of mealtimes and exercise, if I’m able to. But some days, the least effort sends the room spinning. My muscles give out, heart palpitations catch my breath, and I have to lean on something, even if I’m sitting up.
Which leads me to the other part of my job: constantly self-monitoring for symptoms. How hard and how long I can do anything, from reading a novel to designing curriculum from my laptop at home, depends entirely on my symptoms. If my tinnitus becomes deafening, I know I can lose days of work if I push through it.
Then, at the end of the day, I log my symptoms and mark what, if anything, I was unable to do. A day when I do all this and have nothing to mark down but my preventive medication is a very, very good day.
* * *
The challenge with tracking chronic migraine is guessing which stage I’m in. Migraines have four stages: the prodrome, aura, attack, and postdrome. But these can blur together when a migraine goes on for days or weeks. So I do my best. It helps that each migraine stage seems to map onto a Kubler-Ross stage of grief, where I swing from frantic bargaining to denial to rage and depression.
It took me over two decades to recognize my postdrome symptoms for the warning sign they are. There’s excessive yawning, irritability, mania or extreme fatigue, fragmented sleep, and distractibility. At this point, the nervous system (specifically the trigeminal nerve) is already overexcited. Sometimes rest can cut it short, but more often than not, an attack is now inevitable. While I may “seem” fine during the prodrome stage, my brain is already shutting down, and I may opt out of activities or shorten an outing in hopes of reducing the severity of the oncoming attack (i.e., not collapsing and vomiting in front of folks). The best thing you can do for someone in the prodrome stage is to trust their judgment and give them a little grace for the personality changes that ensue. Their brain is no longer their own, and the prodrome stage can last up to three days.
This is also my denial stage where I’m eager to tell everyone I’m fine because, after all, I look fine. Or, it’s denial with a twist. I’ll acknowledge that I’m in the prodrome stage. I even acknowledge that yeah, sure, a migraine is going to thunder through my brain at any minute. Sure. Fine. Yeah. All good here. I just deny that I feel anything but fine about going through yet another migraine. Play it cool, I tell myself. You’re cool. I’m cool. Everything’s cool.
Except I say all this to myself in a breathy panic.
This is the stage that makes denial impossible. Auras occur 5 to 60 minutes before both epileptic and migraine attacks, and they provide a fascinating tour of the brain’s anatomy.
As an electrical wave rolls through my occipital lobe and (for me) brainstem towards the frontal lobes like a stormcloud, I begin to hallucinate, and those hallucinations depend on which part of the brain is hit hardest. For some people, it’s tunnel vision, blind spots, and shimmering shapes. For others, it’s an overwhelming smell or sound (tinnitus). For others still, they feel movement that isn’t there, whether external (vertigo) or internal (Alice in Wonderland syndrome). Often during an aura, I’ve looked down at my own hands and not recognized them. And for a very few people, this is where the attack ends, otherwise known as a Silent Migraine.
Since my classic migraines have transitioned into migraine with brainstem aura, this stage has become less psychedelic and more frightening. Once, my auras were beautiful, shimmering poems on the transience of all things. The fragility of our senses and our dependence on them. I saw that my perceptions were only a veil cast over consciousness, through which sometimes I could glimpse other, entirely alien worlds.
Now, they have become lightning strikes from a vengeful god. I lose my vision completely, break into a cold sweat, feel the floor rock under my feet, collapse, slur words that I won’t remember saying an hour later, eventually become unable to think of words at all (aphasia), and vomit or feel about to vomit. I am deafened by a humming tinnitus, experience heart palpitations, and am too weak even to raise my arm. I’ve even learned the fancy medical term “partial syncope,” which simply means that my consciousness ebbs.
Unable to deny facts any longer, I start frantically bargaining. Maybe if I drink some water. Maybe if I just sit down. Maybe if I just walk over here and breathe for a minute. Maybe if I go outside for some fresh air. Maybe if I take a sumatriptan. This only lasts until language itself gives out. It’s like watching the wheels on a speeding car pop off. My mind keeps going down the road, but it can’t get anywhere now. It just skids for a while, throwing off sparks, until it crashes into a fence and stops.
But when I listen to that little voice inside me trying to bargain my way out of the inevitable, I make things so much worse. Instead of just sitting down, I crumple to my knees in front of total strangers. So I’m learning. It’s just never worth making a deal with a migraine. It won’t work.
So then we come to the part I had hoped maybe I could get out of. But I can’t. I’m stuck with the attack itself. This is where anger and depression go hand in hand. I tried my best, and what did it get me? The exact same outcome. And if I “tried” in the way our culture urges us to with our health (exercise, powering through, pushing against my limitations), my symptoms are much, much worse.
This is the part when I question all my life choices, hate everyone, wonder what I ever did to deserve this, and wish the pain would just kill me already. Each month, I spend about 77 hours in this stage. During this stage, light and sound cause physical pain. Everyone knows about the headache, but for many of us, there’s also vomiting, disabling weakness, chills, fatigue, clouded thinking, language difficulties, nausea, dizziness, and constipation. Migraineurs have, in fact, died from confusing a stroke for a migraine because the symptoms are so similar. If in doubt, get it checked out.
I don’t know if the final stage is so much acceptance as resignation. The migraine happened, and now my brain doesn’t work right for several days. I split about 12 to 17 days each month between the prodrome and the postdrome. Sometimes I can work on these days. Sometimes I can’t. But at least the pain is mostly gone.
Also known as a migraine hangover, the postdrome can last several days. Along with ongoing light and sound sensitivity, aches and pains, and extreme fatigue, the most common symptom is a mental fog so thick that even filling out a form in a doctor’s office or making a grocery list become difficult. Work, if it proceeds at all, is slow and confused. I make errors. I disappoint people. I can’t recall what happened an hour earlier. If we had an important conversation when I’m in this state, I won’t remember it, even after I’m recovered. Everything feels deadened. Time slides by. Days pass in the postdrome, and it’s hard to be sure what I’ve done. If I’ve done anything at all. It’s like trying to live your life in that state right before you fall asleep, when you can recollect a hundred things but fail to make meaning out of any of it.
* * *
Basically, I guess my point is that if any of this sounds familiar, get yourself a good neurologist and figure out a treatment regimen. It can take years, so the sooner you get started, the better. Migraine is unpredictable, and although it’s neither degenerative nor lethal, it can be profoundly disabling. In fact, the World Health Organization ranks chronic migraine as among the most severely disabling diseases, alongside quadriplegia and dementia. You don’t want to mess around with that.
And if you are a child abuse survivor, do everything you can to stay healthy. But recognize that if you do develop chronic illness, it’s not your fault. I was taking dance classes, lifting weights, swimming, and running daily before my health fell apart. I got enough sleep. I ate my fruits and vegetables. I meditated daily. I rested when I needed to. But still I got here.
And if that’s you, too, recognize that you did your best. And even your best was never going to change your past. You didn’t deserve to be abused, and you don’t deserve the health outcomes it left you with. None of us do. But here we are. And we’ll go on doing our best, enjoying what we can, connecting with people who truly love us. Because even sick from the cruelty of others, we’ve moved beyond them. And we’ll keep on moving beyond them.
Because that’s what survivors do.