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Essays

My Life As A Migraineur

A life filled with chronic migraines is a trial by fire. You come out the other end with strength you didn't even know you had.

Waves of electrical activity, like a thunderstorm, wash over the brain: migraines are a neuro-physiological event. There is no cure, but there a thousands of remedies. Women are three times more likely to suffer from them–in the recent past, migraines were thought to be brought on by hysteria. I’m worried I can summon a migraine just by writing this, even though I know they are not psychosomatic. I had a visual migraine, one with an aura, a week ago: in other words, I was hallucinating while I was out getting a coffee on an otherwise normal Tuesday morning.

Oliver Sacks describes his first migraine aura as “an enormous shimmering semicircle stretching from the ground to the sky, with sharp zigzagging borders and brilliant blue and orange colors.” I saw a clear geometric shape, or pattern. It looked like a crystal, like a geode with the same jagged edges. It got bigger and bigger, and the edges began to shimmer. Migraines, and their auras, arrive precisely when I’m at a crossroads in my life. They persist because of my PTSD as a rape survivor, and I’ve learned to live with them.

At 17, I was a mad girl poet who loved Sylvia Plath and dressed like David Bowie. People in my small Midwestern town laughed, but I didn’t care. This was the proto-me, an early version: super sensitive, artistic, tough on the outside. I was also under the influence of Edgar Cayce and Herman Hesse—and about to get my first migraine. It began on a bright sunny day in downtown Kenosha. My best friend, Kathy, and I were fabric shopping. She was a designer, and had an idea for a dress. A bold geometric plaid caught her eye, black and white with red accents, like a Mondrian.  As she draped the bolt of fabric across her body, the colors began to hurt my eyes. They were too intense. They were vibrating.

Migraines, and their auras, arrive precisely when I’m at a crossroads in my life.

I squeezed my eyes shut, embarrassed. Was I was losing my mind? When I opened them, the whole world was black and white, except the edges glowed like a prism. As if I was underwater, and my goggles were cracked.I broke out into a cold sweat. I felt the color drain from my face. Kathy grabbed me, asked what the hell was wrong, and walked me outside. The aura only lasted ten minutes, but the migraine hit about an hour later. A freight train roared into my head. I lay in my darkened bedroom, stunned by the intensity of the pain; cowed into perfect submission, and perfectly still, with a cold rag over my eyes.

A few years later, I moved to Florida, and  the migraines traveled with me. In the land of frangipani trees, and pink hibiscus, I learned to keep a stash of meds, and buy blackout blinds. I now knew how to acquiesce and how to surrender to the migraine’s onslaught. With my black market meds, I’d sleep for 24 hours in a dark, quiet room. I’d wake up, shaky and hungry, but no headache. It felt good, like a baptism by fire. I enjoyed it–not the headache, of course, but the rising from the dead.

The author, Lillian Ann Slugocki, pounding water before a migraine.

In my 20’s, surrender was all I needed to know. Those headaches felt like clear cutting in the forest; slashing and burning trees– removing dead weight, making room for new growth.  I was also addressing my rape for the first time, and assumed that once I was healed, the migraines would never come back.

In my 30’s, now on the Upper East Side in Manhattan, the auras were gone. Now, it was sinus headaches that would morph into migraines.  I also had a weird form of agoraphobia. I couldn’t walk more than a one block radius in any direction, without badly disassociating, I had new meds for the migraines, which allowed me to function, but I was still trapped. I countered by reading Alice Miller, Clarissa Pinkola Estés, and listening to the relaxation tapes of Louise Hays: the triad of female empowerment in the early 90s. I also finally understood, or had to admit, my migraines were chronic. They would always be a part of my life. My ritual of the darkened rooms, the relaxation tapes, the cold rag, the silence– helped me stay in control, ride the waves.

I finally understood, or had to admit, my migraines were chronic. They would always be a part of my life.

Recently, however, my life as a migraineur spun out of control again. In the spring of 2016, I was diagnosed with severe intractable migraines– which lasted almost four months. The pain meds I’d been using for 25 years were powerless against them. This led to several trips to the emergency room, in the middle of the night, often in the pouring rain. All  types of therapy were offered: steroids, oxygen, antihistamines. The isolation, embarrassment, and shame were worse than the pain. Every day revolved around the headache. When I woke up pain free, I was exultant, until I started to move around, make coffee. I could calibrate in those first few moments, exactly how bad it was going to be.

If I called in sick to work, I didn’t use the word ‘migraine’. Food poisoning always sounded better. I was still tapping into the shame, or cultural “hysteria” of the female migraine. Yet being ashamed of having migraines because of their cultural baggage seems counterproductive: some of the most accomplished women I know also have them. We send private messages to each other over social media, providing solace, succor, and advice: what meds might work, maybe massage, piercings, magnesium, and how X had tried Botox with success. One such friend stayed online with me, as I tried a new med for the first time: a triptan. The side effects sounded terrifying; pressure in the chest, dizziness. This is true sisterhood.  She was my migraine shaman. It broke the isolation which probably helped more than the meds. Paula Kamen also writes that the worst thing about chronic daily pain is “emotional suffering – from all the guilt and the shame, of patients like me thinking it’s our entire fault, and maybe all in our heads,” and maybe we’re all crazy.

These days, I tend to my migraines in the same way I might tend to a small, angry child. What should I feed it? Does it want chocolate, coffee, French fries? Would a hot shower make it feel better? Should I just lie down, but wait… maybe a walk is better. I should be more hydrated, eat more protein, but the thought of real food always makes me nauseous. Sometimes I spend three days in a dark room, just me and my head on fire, and lie to my friends and colleagues about why I’m not returning phone calls, texts, emails. When you’re that sick, life telescopes down to only the strategy of managing that pain.

We migraineurs are a type… We know when to fight, and when to relinquish control. We always recognize our tribe.

However, the tenacity required to survive this is transformative. It’s now part of my narrative, and my DNA. I’ve learned when to be proactive and when to let go. Some things are simply out of our control, and the more we fight, the worse it gets. This is a tough lesson to learn, but it has served me well in life. If after yoga, caffeine, pain meds, meditation–I still have a migraine, I just surrender. After decades of chronic pain, I understand I did nothing to cause this, I’m not to blame, there’s nothing wrong with me, and what can I binge watch on cable?

Siri Hustvedt writes “The changes in the nervous system wrought by an oncoming headache, the lesions caused by a stroke or a bullet, can affect the brain’s internal corporeal map, and we metamorphose.” I believe, we migraineurs are a type: both men and women, but mostly women. We know who we are. We are driven, intelligent, with an incredible work ethic. We know how we’ve been transformed, metamorphosed. We know when to fight, and when to relinquish control. We always recognize our tribe.

Top photo by Flickr user XoMEoX published under Creative Commons license.

Essays

How Migraines Drove Me Out Of The Office, And Into My Dream Job

Self-employment was the perfect solution for my problem with chronic headaches, but it shouldn't have been my only option.

When my alarm goes off at 7:32 a.m., I slap at it while trying to dodge a blinding ray of morning sunshine.

That should get me going. Instead, I groan and try to turn away.

The light sears my sensitive eyes, and the ache in the back of my neck doesn’t so much abate as twist when I rotate my head. The inside of my skull feels raw and fuzzy like an inverted tennis ball.

My husband hears my muffled moaning in the next room and comes in to check on me. “Is it your head?” he asks, already knowing the answer and leaning down in case I’d like his help sitting up.

I do. As I sit upright for the first time, I get that initial diagnostic blood rush that helps me gauge how soon I need coffee, or ibuprofen, or something stronger to make it through the morning.

Migraines can make even the healthiest body feel aged and weak.

This particular day, the pounding subsides after about two minutes. That means it’s a good day. At this rate, I’ll be at my desk working within 30 minutes.

With my right hand on my temple to ease the throbbing, I shuffle to the bathroom and shake two pain relievers into my mouth. The tap water seems extra cold this morning as I wash down the tablets, then splash my face. I wonder if other people–people without chronic migraines–feel the same intense relief of icy water on their skin, the way it feels like it penetrates the surface, tingling with healing powers.

I head into the kitchen and hit the button on the electric teakettle to get water boiling for coffee. From there, my hand goes automatically to the refrigerator. There’s a cooling eye gel roller in the door. I smear it around my eyes and on my temples, which probably makes me look even more manic than I feel.

But mostly, I don’t feel manic. I feel tired.

Migraines can make even the healthiest body feel aged and weak.

A National Epidemic, Especially Among Women

Describing a mostly undetectable illness can also wear a person out. According to the Migraine Research Foundation, more than 38 million Americans suffer from migraine headaches. Of those, a whopping 28 million are women. It’s a fairly common condition, but talking about pain, especially invisible pain, is intrinsically linked with gender norms, no matter how enlightened you think you are. For years, I apologized for inconveniencing my friends. Even now, I’m overly grateful that my kind husband is such a supportive caretaker, simply because I’m so used to explaining away my own suffering.

I’m not alone in battling the stigma, as migraines have unusual cultural baggage. Back in 2011, then-presidential hopeful Michele Bachmann was roundly dismissed as a strong contender due to the sexist assumption she wouldn’t be able to hold higher office while suffering from debilitating headaches. Say what you will about her political positions, but women migraine sufferers are often used to defending their pain in an uncomfortably similar manner.

Talking about pain, especially invisible pain, is intrinsically linked with gender norms…

This isn’t about gendered weakness; it’s scientifically proven that women experience more pain than men.  Studies suggest that because men’s and women’s brains are different, women are more sensitive to pain, which certainly could explain why women are also the majority sufferers of conditions such as fibromyalgia and osteoarthritis, as well as migraine sufferers in far greater numbers. Women have also been shown to be more resilient when it comes to tolerating pain, though I have to wonder which came first: all this gendered pain or our ability as women to deal with it.

After nearly three decades of managing the symptoms, I can tell when a migraine is going to be easy to quash, and when I need to pop a triptan. Depending on the day and severity of my symptoms, some people might not even label my pain as a migraine; today, for example, it’s likely a run-of-the-mill headache.

But, given that I’ve had debilitating headaches since I was around 8 years old and been trying to explain them since, I don’t tend to parse the difference anymore. If I can get up and get to work, I’m grateful. That doesn’t mean I’m entirely well, or that my pain doesn’t deserve its severity label.

How Migraines Gave Me My Dream Job

For the past decade, I’ve been an independent journalist, which means I work for half a dozen publications at any given time, covering stories and topics across a range of issues. I relish the education and diversity of subject I get to cover… but I especially love that I get to set my own schedule.

That’s because, as a lifelong migraine sufferer, traditional 9-to-5 employment isn’t exactly designed for people like me, who can experience extreme torment at the drop of a hat. When I experience an attack, I have to quickly deal with any number of symptoms, ranging from projectile vomiting to extreme sensitivity to sound and light.

As a lifelong migraine sufferer, traditional 9-to-5 employment isn’t exactly designed for people like me…

Being a freelancer is a lot like being a perpetual student. There are constant deadlines and little resembling a traditional  workday schedule. (Going out with fellow freelancers during the week is like the study group part of adulthood.) I love the unpredictability and often late hours, and I’m extremely fortunate to be so well suited to my profession. Some of the sting of freelancing is also taken out of my situation thanks to the fact that my partner’s job provides me with reliable health insurance.

I’ve always been entrepreneurial by nature. During graduate school, I had several jobs—in upscale restaurants and university offices—that helped cement my desire to figure out how to be as professionally self-sufficient as possible. In each of them, my migraines helped quickly drive me from the job.

In one administrative position, the office’s overhead fluorescent light panels often made me ill, or at least threatened to do me in. I’d be fine for weeks at a time, and then, due to some unknown trigger, the lights would do me in, and the migraine symptoms would suddenly show up. I’d have to ask to go home sick in the middle of the afternoon, helplessly trying to explain that, like Cinderella at 11:15pm, I was just 45 minutes away from a complete breakdown. “You see, I can already tell that if I don’t get to bed now, I’ll be blindly throwing up in the ladies room in less than an hour.” Talk about oversharing… but how can you discuss a sickness you can’t see if you don’t overshare?

But there are worse things than managers that don’t understand. After going home with a migraine at a high-end waitressing job, my paternalistic boss decided I didn’t need to come in the next morning.

How can you discuss a sickness you can’t see if you don’t overshare?

“You should rest,” he insisted, and took me off the schedule even though I was well enough to go in, and needed the money.

“I’ve had migraines. I know how they are,” he said as if I didn’t know the same.

It wasn’t long after that I swore I’d find ways to not be reliant on people like him, who both seemingly cared but ultimately robbed me of the one thing a job is supposed to be about: making a living.

gustavo

Photo: Gustavo Devito

 

But Self-Employment Shouldn’t Be The Only Solution

Illness and disease are often talked about in terms of cost, and I don’t just mean health insurance or prescription medication.

Recently, after spraining my foot while out reporting in the mountains, I began thinking about the personal and social costs one incurs from some sort of symptom set or constraint. I can still walk, but in a controlled ankle motion (CAM) boot, I’m forced to be steadier and slower. If I want to get around quicker, I could spend money on a taxi. Even I want to take public transit, a cheaper option, I’ll still likely force some small percentage of commuters to wait on me. My personal injury or illness may mean the bus doesn’t run on time for a large group of people.

When my migraines were more frequent and intense, it had measureable costs. There is immense privilege in being able to be self-employed, and to have access to the drugs I need. There were times when my preferred prescription, still under patent and unavailable as a generic, cost $45 a tablet without insurance. Weighing whether and when to treat symptoms is something far too many people consider every day. If my husband were ever without full-time work and health benefits, I’d have to reconsider the independent nature of my career.

As with other gendered aspects of illness, I do wonder: when getting sick at work got to be too much of a hassle, why did I solve the equation by removing myself as the variable component? I probably could have explained myself more thoroughly or found workplaces more accommodating to my condition, or to diversity and differences more generally.

For me, being self-employed is a natural fit. I’d always wanted to work from home, and I’m fortunate that enough factors in my life made that a relatively painless transition.

People with certain limitations who may already feel shut out of society shouldn’t be expected to self-select out of careers and corporations where their needs won’t be met…

But I’m not convinced that freelancing and self-employment offer the easiest career path for the majority of workers, even though traditional workplace culture has been slow to evolve to accommodate a range of limitations, visible or not. People with certain limitations who may already feel shut out of society shouldn’t be expected to self-select out of careers and corporations where their needs won’t be met, which is sort of what I did without fully questioning why.

People with health conditions and limitations are often the people who are most vulnerable, and many rely on the health insurance coverage and guaranteed salary offered by traditional full-time employment. Statistics show that the percentage of the workforce that freelances is only going to continue to grow as the post-recession economy remains sluggish and companies can save resources by outsourcing work to contractors. On one hand, that seems liberating for some people. But asking those already at risk to invite and endure further uncertainty by working on contract, or to worry about finding and affording their own health benefits, seems like a particularly volatile, unfair situation into which many may feel increasingly forced.

As much as I’m an evangelist for freelancing, I’m also an advocate for being empowered to meet your own needs. It shouldn’t be up to individuals to wage every wage battle on their own. But until there can be more open discussions about the limitations people face in the workplace and better policies to support a wider range of worker, we might have to keep oversharing with our employers, and with each other.

Q&As

Moleskines & Memory

After a stroke at 33 left her with amnesia, Christine Hyung-Oak Lee turned to journals to make sense of her present, her future, and her past.

When writer Christine Hyung-Oak Lee woke up with a splitting headache on New Year’s Eve of 2006, she thought it was just another one of the awful migraines that had plagued her for most of her thirty-three years.

As the day wore on, though, more alarming symptoms developed.

On a hike in Tahoe, she saw red snowblowers in a parking lot rotated ninety degrees—her world had literally turned upside-down. Numbers became squiggles; colors lost their names. She suffered from aphasia, substituting forgotten words with nonsense terms (making breakfast with her husband, she called eggs “shell-bells,” for example). But, having been trained as a child to remain stoic in the face of pain, Lee didn’t seek medical help for these symptoms until almost a week later.

Photo: Kristyn Stroble

Once she finally arrived in the hospital, an MRI revealed Lee had had a stroke. A blood clot had traveled up into her left thalamus, killing part of her brain. She could have died. Instead, she was left with anterograde amnesia, unable to form new memories or to retrieve many old ones. To compensate, she began taking meticulous notes in Moleskine journals. These served as a kind of external hard drive, storing the names of her doctors and new acquaintances, details of conversations she’d had, and records of her daily activities.

Eight years later, once she’d fully recovered, Lee turned to these journals while writing her astonishing new memoir, Tell Me Everything You Don’t Remember: The Stroke That Changed My Life. An expansion of her viral Buzzfeed essay, “I Had a Stroke at 33,” it weaves accessible explanations of neuroscience behind memory with lyrical, moving accounts of her own experience with memory’s fragility.

We talked to Lee about the unexpected perils of living fully in the present moment; how writing about her stroke saved her life; her experience of pre- and post-stroke depression; and why the world could benefit from a virtual reality machine that helps people empathize with the disabled.

Like Billy Pilgrim, the protagonist of Kurt Vonnegut’s Slaughterhouse-Five—the first paragraph of which you read over and over after experiencing memory loss—you became “unstuck in time” after having a stroke at age 33. For those who haven’t read your memoir: What does it feel like to live with the type of memory loss you experienced?

I lost my short-term memory in the wake of my stroke, which meant I couldn’t read more than a paragraph without having to start over (and over again), because I couldn’t remember what I’d read. It meant I couldn’t make a meal, because I’d forget what it was I was making—I’d burn the pan and scorch the toast and leave the mixer running. It meant I couldn’t remember a grocery list. It meant I didn’t remember conversations, so every conversation was lighthearted.

But at the same time, I couldn’t fret about the future and I couldn’t be anguished about the past. So even though I’d normally be frustrated about having to reread something, I didn’t have the mental capacity after my stroke to remember that I used to be able to remember and that I was supposed to remember—so I’d literally just start over again, without a bother in the world.

So in my case, it felt just fine—blissful even, until I’d recovered enough to realize the magnitude of my loss. Sometimes I’m nostalgic for those first few weeks of recovery.

Many of your post-stroke mental states echoed those sought by Zen monks, or psychonauts taking hallucinogens—an immersion in the present moment, unburdened by thoughts of past or future. “With the loss of memory, so much of my immediate pain was gone,” you write. “So much anxiety requires memory.” Is living fully in the present moment all it’s cracked up to be? Post-recovery, are you still able to access that state of immersion in the present moment, or at least better able to access it than you were pre-stroke?

Living fully in the present moment is pretty damn awesome. And there are times I wish I could achieve that state of mind again. I can sometimes touch that serenity when I do yoga, by envisioning the experience in my mind. But it’s elusive. It’s like trying to go back to your childhood; I’ve been able to be childlike, but I’ll never be able to achieve the state of childhood.

Living fully in the present moment is pretty damn awesome.

But here’s the thing: I learned firsthand that living in the present moment is not sustainable; it’s hell on the people around you, who are then burdened with all the planning and foresight.

In many ways, the stroke was a gift: “I was disarmed,” you write. “And because I was disarmed, I had to live life in a new way. I became different. At first I resented this difference. And then I accepted it. And then I loved it.” What do you think your life would be like now if you hadn’t had a stroke?

I’d probably be the same hard-driving, high-energy woman I used to be. Basically, like all the characters Parker Posey plays—you know, the ones where she is described as “making coffee nervous.”

It took you eight years to be ready to write the book that became Tell Me Everything You Don’t Remember. “Writing trauma feels impossible at first,” you write. What was the process of writing the book like? How did writing it help you heal—not just from the stroke, but from the series of traumas that preceded it, including the end of your marriage?

Writing Tell Me Everything You Don’t Remember saved my life. I was frankly going through the worst time of my life while writing the memoir. I’d had a baby after thirteen years of infertility—and had severe postpartum depression for nine months. My husband had an affair and then left me after eighteen years together. He had been the love of my life. I was crushed.

It took eight years to write about the stroke, because it took eight years to understand my stroke and its impact on my life. And it only became safe to examine my stroke after something else brought me to my knees. It was then that I found it bearable to look at the past.

It only became safe to examine my stroke after something else brought me to my knees. It was then that I found it bearable to look at the past.

So being able to step away from my ongoing life into the memoir was an incredible sanctuary, even if I was writing about something terrible that had happened to me. It was a way to make something painful, meaningful.  

What are some of your favorite books on the subject of illness and recovery?

Brain on Fire by Susanna Cahalan. Floyd Skloot’s In the Shadow of Memory. The Brand New Catastrophe by Mike Scalise.

You describe people’s eagerness to hear that you were “100% better” after your stroke. Many people get awkward and uncomfortable when talking to those suffering from illness—because they’re afraid of saying the wrong thing, because talking to a sick person reminds them of their own vulnerability and mortality, because they’re more comfortable with pleasantries and surface-level chitchat than difficult conversations about illness. What is the “right thing” to say or do for a friend, colleague, acquaintance going through an illness like yours? What were some of the most helpful things people said to you during your illness and recovery process?

I wish there were one right thing to say—there isn’t a magic line. On the other hand, there are many right things to say, but they require intuition and empathy.

The most helpful thing throughout recovery for me wasn’t what people said, but something they did: they listened.

The most helpful thing throughout recovery for me wasn’t what people said, but something they did: they listened.

Anything helpful friends said was informed by their listening. And by listening, I don’t mean an hour-long therapy session—but honestly, having a real conversation, even if for ten minutes. I think it’s helpful to ask people not “How are you?” but “How are you today?” Because in sickness, each day is so different, but you’re always pretty much sick.

Furthermore, I found it helpful when people didn’t just ask what I needed, but “What do you need today?” Specificity helps.

You write about how frustrating it was, after your stroke, to have to explain to people that you were ill—and for them to not really get it, because your body functioned normally and you looked “fine.” What do you wish more people had automatically understood about your condition? What would it take for us, as a society, to better understand and approach invisible disabilities like yours?

The cover of Tell Me Everything You Don’t Remember, now available on Amazon

When people with Lyme are active and socializing one week, and crippled by Lyme symptoms the next, I understand that illness ebbs and flows. I wouldn’t really understand this had I not had to recover from my stroke and experience firsthand the nature of illness and exhaustion and recovery and relapse.

It would be great to have a virtual reality machine through which we can each personally experience disability and while we’re at it, experience different ethnicities or genders or physicality or economic class. I feel like that would really help people develop empathy.

But to get to your question: I wish people had just accepted what I’d said. And gotten past their own discomfort. And here again, is where that wonderful virtual reality machine could be a solution.

Christine Hyung-Oak Lee’s book, Tell Me Everything You Don’t Remember, can be purchased on Amazon here.

Essays

Dr. Wrong

Finding a doctor who can diagnose your seemingly undiagnosable condition isn't like dating. It's worse.

Two years is a long time to have a headache… especially when diagnosis is always just out of reach.

I’ve landed myself an appointment at the University of Colorado Hospital. Although this will be my fourth neurologist, none of whom could figure out what was wrong with me, this appointment feels important somehow. Like I am taking a step up in the medical world: the University of Colorado Hospital is a research hospital.

Author Stephanie Harper has had a headache for the last three years.

My last neurologist’s parting advice was that, in his opinion, the only thing left for me was to consider a surgical option, a neurostimulator. He made it seem dire, as though this was a sort of Hail Mary, my last chance at any kind of relief for the constant pain I’ve been in since my headache started. But surgery sounds scary and permanent. The idea that a pacemaker type device would be put inside my body, that wire leads would be placed in my occipital and/or peripheral nerves is terrifying. But the idea is also action-oriented, and I so desperately crave something to be done to help alleviate my pain—which has been unremitting these last many months—that I am willing to try anything.

So for four months, I wait: an eternity of excruciating tedium.

My baseline headache, that pesky pain behind my right eye, is a constant companion, and the days tick by slowly. I do my best to keep slogging through my daily routine. I’m doing freelance work as a writer and editor, while also looking for a part-time job to supplement my income. The problem is any job that can lead to any kind of over-exertion can cause my pain levels to rocket off the charts, putting me out of commission for hours or even days.

Some days, my headache spikes to an extreme level. My head throbs, I can’t see, I’m nauseous and dizzy and can’t be on my feet any longer than it takes to get up and go to the bathroom. My whole body aches and tingles, waging war against me. I don’t get out of bed. On those days, the wait is unbearable.  

Then, the day finally arrives.

The Appointment

My mother and I make the 40-minute drive out to the big medical campus in Aurora. It’s overwhelming. The hospital parking garage is so full we park on the very top, out in the open. It’s a March day, so it’s chilly, but the sun is shining. As I walk inside and find my way to the headache clinic, I think: This place has to make a difference. Has to get things done. I’m confident that I have found what I’ve been searching for. A temple for the answers I’ve been seeking.

Then, I meet my doctor. Or I should say my Fellowship Resident.

I go through the complete history of my headache saga, which feels so rehearsed I could be performing a soliloquy.

“When did your headache start?” he asks me.

“October 28, 2013.”

“Any precipitating event? Injury? Illness?”

“No.” I twist the strap of my purse in my hands. The truth is, I woke up with the initial pain behind my eye that morning, and it hasn’t gone away since.

He scrolls through my chart on the computer. “I see that you’ve had MRIs and they’ve come back normal. Any other tests?”

“I’ve also had an MRA. And an EKG and heart ultrasound. And a lumbar puncture. Plus, all the blood work.”

“All normal?”

I look down at my feet. He has the answers right there in my chart already. Asking me about all of this feels like he’s rubbing it in… like I’ve failed a test or something.

“Yes,” I force myself to answer.

He writes a few things down on the paper I handed him when I came in: a survey asking me about my pain levels for that day.

“Can you give me a list of the treatments you’ve tried?” my Fellowship Resident continues.

Maybe it’s just helpful for him to hear me list it all out instead of digging through months and months of medical history. I try to see if I can remember them all. The list goes something like this: “Dilauded, Imitrex, Verapamil, Topamax, Gabapentin, Nortriptyline, Propranolol, Lithium, Botox, Nerve blocks.” He takes more notes and I feel less like a dramatic actor and more like an eyewitness for some terrible crime.

When we finally get to a stopping point, he asks me: “What do you hope to get out of today’s visit? Are you just looking for a second opinion?”

My stomach drops.

“I was under the impression that I was here for a surgical consult on an occipital nerve stimulator,” I stammer.

“Oh,” he breathes, and his eyes widen. That may be why I’m here, but it’s not why he’s here. “I don’t do that procedure. I’m not sure anyone here does.”

Doctor Wrong

I feel the tears welling up in my eyes and I bite my lip.

I don’t want to cry because once I start, I’m not sure I can stop. Also, he’s young and I like his red beard and glasses and he’s not wearing a wedding ring. This should not be something I’m focused on in this moment, but I notice these things and the thought runs through my head anyway, and now I just feel worse about potentially making a scene in front of this potentially-eligible wrong doctor bachelor.

So, I don’t cry. And I don’t explode at the absurdity of this situation. I take a deep breath and explain how long I’ve been waiting for this appointment, how much hope I’ve pinned on this day. I can tell he is sorry, and perhaps a little embarrassed. He tells me it was probably a clerical error somewhere in the referral process. Then, he exits to discuss the situation with his supervisor.

He leaves the door cracked open. I sit for a few minutes in silence, texting my mother who’s sitting in the waiting room, explaining what has just transpired. I can feel her anger the way you sometimes can, even in a text, no exclamation points required. I am shaking with disappointment. Just not crying is taking real physical effort. The fluorescent lights of the exam room bear down on me, as they always do, and I can feel my headache pain begin to flare under the surges of overwhelming stress I’m suddenly feeling.

Then, I hear them in the hallway. It’s almost an out-of-body experience, hearing him recite my story.

Once again, I am my headache. No name, no distinguishing features, just a list of symptoms.

26 years old. Debilitating headache. Almost two years. Quality of life greatly affected.

This is what I look like on paper, how my very complex situation, my life, is summarized by medical professionals. It makes me squirm. I’m a child listening to her parents talk about her behind a closed door. More than that, once again, I am my headache. No name, no distinguishing features, just a list of symptoms.

When he returns, I can feel my face and chest flush with an awkward sort of embarrassment, as though I’ve been caught peeping.

It turns out there is a doctor who knows something about the procedure, who might be able to help me, or at least provide me with some information. He tells me he will refer me right away and that I should go ahead and make an appointment, pending approval.

It turns out I can’t make an appointment. I have to wait for my referral to be processed once again. They’ll call me. After a week of hearing nothing, I call them. The earliest I can get in to see this new doctor is another three months away.

So begins another season of waiting.

And when that appointment comes, after three months of waiting, this next doctor will tell me that I don’t need surgery. He’ll say neurostimulators aren’t a good option for any headache sufferer, and will present me with compelling evidence to support why he thinks so. And so I start all over again: a circular path of treatment after treatment that never goes anywhere, and never gives me relief.

My headache will continue. Leaving me just one choice: on this long road, I must somehow make peace with my pain. Because I don’t have a choice.

Awaiting Dr. Right

Today, as I wait for my newest referral to yet another specialist and try to play games with Medicaid, I think back about my one time meeting with the Fellowship Resident. 

He was the wrong doctor on that particular day because a clerical error put me in his office instead of the office of the neurologist I was meant to see.

And, that neurologist has perhaps turned out to be the wrong doctor because I have not responded to a parade of treatments the way he had hoped.

Similarly, my third neurologist–the one who referred me to my red-bearded resident–was Dr. Wrong, because he ran out of ideas to treat me.

And the one before him was Dr. Wrong too.

It sometimes seems like being bad at dating, because there’s certainly a pattern. And the pattern would suggest, at times, that there is no such thing as Dr. Right. At least not for me. What hope do I possibly have?

But I can’t give up. Even when it feels foolish or naïve, this optimism is also a fundamental part of who I am. And I need it. I need it to get out of bed in the morning and keep going despite the fact that I can’t remember what it feels like to not be in pain. And I don’t think it’s wrong to think that the right doctor is out there.

I may not have met Dr. Right just yet… but I’ve met pieces of him.

Because while my Fellowship Resident might have been the wrong doctor that day, he still treated me with concern and compassion. And he’s not alone: my primary care physician, who has been my doctor for over 15 years, has stuck by me throughout everything, supporting me and validating my suffering. He never downplays what I experience, what it means to be in pain every minute of every day, or the effect this has on me physically and emotionally.

So I may not have met Dr. Right just yet… but I’ve met pieces of him. These men are glimpses of the right doctors who, I believe, can help and heal me. I am not so naïve to think there is a magic bullet for whatever is the root of my pain, but I do think I can continue to look for ways to manage and maintain, to fight for a means to a better life, and to hope for some kind of answer to come to help better understand what is happening to me and my body. I have to hope that there is an answer out there, waiting to be found, and that when I meet Dr. Right, he will be ready and willing to search with me for the key.

 

Histories

The Brain Injury That Helped End Slavery

A vicious blow to the head may have been the catalyst that turned Harriet Tubman into an Abolitionist hero.

An American icon of freedom and resilience, Harriet Tubman’s portrait is slated to grace the $20 bill beginning in 2030. It’s an auspicious achievement for a hero of civil rights who escaped from slavery, led hundreds of others to do the same, all while balancing a challenging array of chronic conditions including migraines and acute attacks of narcolepsy.

Before escaping to freedom and leading hundreds of southern slaves north along the Underground Railroad, Harriet Tubman lived for nearly 30 years in slavery. Born Araminta Harriet Ross in 1820 to enslaved parents Ben Ross and Harriet Green, Tubman was one of nine children and grew up on a Maryland plantation. It was near there that, when she was around 12 years old, she was mercilessly struck in the head with a two-pound lead weight.

It should have been a harmless chore. Tubman had been sent to a dry goods store on an errand and encountered another slave there, a fugitive who had left his plantation without permission. When the slave’s overseer demanded she help restrain him, a defiant Tubman refused.

Writer Sarah Hopkins Bradford explains the incident in her 1886 authorized biography, Harriet, the Moses of Her People:

“The overseer caught up a two-pound weight from the counter and threw it at the fugitive, but it fell short and struck Harriet a stunning blow on the head. It was long before she recovered from this, and it has left her subject to a sort of stupor or lethargy at times; coming upon her in the midst of conversation, or whatever she may be doing, and throwing her into a deep slumber, from which she will presently rouse herself, and go on with her conversation or work.”

A rare portrait photograph of Harriet Tubman.

A rare portrait photograph of Harriet Tubman.

Tubman’s overseers did not offer her medical attention but sent her back to work instead. Many scholars suggest that Tubman’s untreated injuries led her to suffer from an acute case of narcolepsy, though from what we know today, a diagnosis of cataplexy—sudden muscle weakness and paralysis—as well as hypersomnia, seem equally likely. With narcolepsy comes vivid dreams and hallucinations, and eyewitness reports substantiate Bradford’s writings that Tubman’s trance-like states would last for hours.

Bradford adds that, following a standard diagnosis of narcolepsy, there was little Tubman could do to control the effects of her condition. “This pressure it was which caused the fits of somnolency so frequently to come upon her, and which gave her the appearance of being stupid and half-witted in those early years,” Bradford writes, adding that “even the lash in the hand of a strong man could not rouse her.”

Tubman dealt with a handful of equally debilitating comorbid conditions, including seizures and fierce headaches. Neither is linked to narcolepsy, but Tubman surely suffered from a range of tiring ailments. The word migraine is never mentioned—much like narcolepsy, a diagnosis for the disorder didn’t exist in the mid- or late 1800s—but the debilitating headaches Tubman described make it seem a plausible diagnosis.

These maladies were just some of many Tubman endured and survived while in slavery, as she was frequently beaten and lashed by her owners. Biographer Catherine Clinton describes, for example, how Tubman wore many layers of clothing to absorb the brunt of beatings. Despite visible scars from lashings that stayed in her body for a lifetime, the blow to the head and the sustained concussion it produced was the most enduring, if often invisible, affliction.

Tubman’s head injury may have been the catalyst that caused her to flee slavery and lead others along the route to freedom.

Rather than a roadblock, Tubman’s head injury may have been the catalyst that caused her to flee slavery and lead others along the route to freedom. Afraid that she was viewed as a sickly person and thus an inadequate slave, some scholars note that Tubman fled to the north due to fears she would be sold and separated from her family. Bradford writes, “The day’s work must be accomplished, whether the head was racked with pain, and the frame was consumed by fever, or not; but the day came at length when poor Harriet could work no more.”

The head injury even became a propellant fueling her faith. Tubman’s mother told her Bible stories in her youth, and Tubman remained a devout Christian. After the incident, she began reporting vivid dreams and powerful “visions” that she believed were revelations and premonitions from God, urging her to follow his teachings and do his will by freeing the enslaved.

Illiterate her entire life, Tubman never learned to read or write and thus did not keep a diary. But she once said, “I was conductor of the Underground Railroad for eight years, and I can say what most conductors can’t say—I never ran my train off the track and I never lost a passenger.” That, and her religious devotion, no doubt helped her earn the reverence of her peers, most notable in her nickname “Moses.”

Tubman led dozens of individuals to freedom along the Underground Railroad but also participated in and led major uprisings as well. In 1858 and 1859, she helped abolitionist John Brown plan his raid on Harper’s Ferry, though when the raid took place, Tubman was said to be ill at home—possibly related to her lifelong condition.

Even still, she continued to work towards the goal of abolishing slavery and believed a Union victory could achieve such a goal. During the Civil War, in service of that aim, she served as a nurse, cook, armed scout and spy. But she noted her faith when she stated of the president, “God won’t let master Lincoln beat the South till he does the right thing.” In 1863, with the assistance of the Union Army, she led the Combahee River Raid—the first woman-led armed expedition in war—liberating more than 700 slaves in South Carolina. She was also active in women’s suffrage, working alongside well-known leaders such as Susan B. Anthony.

Revisiting the matter decades later with Tubman, biographer Bradford writes that Tubman’s persistent illness never ceased to be a bother: “Here in her thirteenth year, [Tubman] is just recovering from the first terrible effects of an injury inflicted by her master, who in an ungovernable fit of rage threw a heavy weight at the unoffending child, breaking in her skull, and causing a pressure upon her brain, from which in her old age she is suffering still.”

In her later years, Tubman had brain surgery to try to help relieve her chronic migraines.

In her later years, Tubman had brain surgery to try to help relieve her chronic migraines.

Late in her life, as her pain compounded and continued to disrupt and impact her work, Tubman sought some relief, undergoing brain surgery at Massachusetts General Hospital in Boston in the 1890s in order to alleviate the persistent pressure from her head injury and the sleeplessness it continued to cause. Unfortunately, there’s no evidence the procedure produced any change in Tubman’s symptoms.

The cliché that women make good caregivers may have less to do with Tubman’s next phase than her own chronic condition and empathy for what people suffering from certain conditions might need. In 1908, the Harriet Tubman Home for the Aged opened in Auburn, New York. Its founder set the goals of the eponymous home: to care for people suffering with paralysis, epilepsy, and those with vision impairment and blindness.

Tubman was eventually admitted to that very home in 1911, and died there in 1913 after suffering from pneumonia. Tubman’s grandniece, Alice Brickler, says of that day, “It is said that on the day of her death, her strength returned to her. She arose from her bed with little assistance, ate heartily, walked about the rooms of the Old Ladies’ Home, which she liked so much and then went back to bed and her final rest. Whether this is true or not, it is typical of her. She believed in mind [over] matter. Regardless of how impossible a task might seem, if it were her task she tackled it with a determination to win.”

She believe in mind [over] matter.

When she begins appearing on the 20-dollar bill, Tubman will be not only be the first woman or person of color represented on U.S. currency in over a century. She may also be the first to suffer from—and survive—a confounding array of conditions ranging from seizures to sleep disorders that, while at times debilitating and demoralizing, didn’t stop her from marching to freedom and leading countless others to the same.