For six years, my mother worked at a teacher's college in the same building where I went to elementary school. We lived a few blocks away, and until I was old enough to walk alone, we went together. Each morning we stopped at a Lebanese deli, fragrant with freshly ground spices, where she ordered her coffee. I carried the cup. For as long as I could remember, she had suffered from a painful neurological disease that numbed part of her legs, made it hard to lift her feet, and sent shooting pains up and down her limbs. She wore a brace on her left foot (and, later, on her right) and two metal forearm crutches to steady her as she walked. They made it impossible for her to hold anything—a purse, a cup of coffee, my hand.
We walked very slowly. My classmates and their parents overtook us, and my mother moved aside to clear a path. When pain overwhelmed her, she stopped to catch her breath. She hid her brace with a long skirt, and the wind blew it flush against the backs of her legs, which were spindly from atrophied muscle. She would sigh, brush her hair from her face, smile, but I could see her jaw was set.
Years later, she told me that by the time she reached her office, closed the door, untangled her arms from her crutches, and hung up her coat, she was in so much pain that she would lie down on the floor and cry. Then she would get up, wipe her tears, sit down at her desk, and listen to her messages. She sipped her coffee; by then it was cold.
Since childhood, I have been aware of the different worlds inhabited by the healthy and the unhealthy—the kingdoms of the well and of the sick, as Sontag said. "Everyone who is born holds dual citizenship," she wrote in Illness as Metaphor. "Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."
My mother began to show symptoms of neuropathy before I was born: fatigue, sporadic pain, swollen joints, tingling in her hands and feet. By the time I was 3, there were days when my mother couldn't get out of bed, though she couldn't say exactly why. The symptoms are common to a cluster of chronic diseases (rheumatoid arthritis, multiple sclerosis, lupus) that are hard to diagnose and hard to treat. Scientists believe these conditions are triggered by some as-yet-unidentified factor in those who are genetically predisposed. It took more than five years for a doctor to admit that there was something wrong with her, that it wasn't all in her head.
My mother's antibodies attacked her nerves, damaging the insulating sheath around them. When I was 12, she had a third bout of meningitis, an infection caused by the gamma globulin infusions she received to boost her immune system. She had to stop treatment, and her symptoms flared. Her doctors told her that if she kept working she would get sicker. Her disease was not only chronic but progressive, and she had to take precautions. She left her job—first for six months, then for a year, then for good.
Each morning my dad, brother, and I left her to her empty days at home. She would kiss us goodbye and then get back in bed. My mother, who had been so proud of her career as a writer and educator, who had won awards for the screenplays she wrote for children's television, lost her public identity. She spent many days staring at the ceiling.
I've always been told that I look like my father, but when I look in the mirror, I see a version of my mother. We have the same freckles, the same smile, the same streaks of gray in our hair when we sweep it back from our temples.
I begin to experience my own neurological symptoms at 26. I've suffered from migraines for years—when I was 5, my mother took me to a pediatric neurologist after I told her the room was spinning and I was afraid I would "fall off"—but this feels different. My head aches every day, but I'm also dizzy, weak, and exhausted. My vision snows out. I forget what I'm saying in the middle of a sentence; I forget even my friends' names. To manage the pain, I take a dose of Advil most days.
My general practitioner sends me home with a prescription for Diclofenac, a stronger version of the ibuprofen I've been taking. I'm meant to take it twice a day for ten days and then report back. He hopes it will clear my head.
Instead, the twinge of pain that's present when I wake each morning expands. By the time I get to work, it has gathered in my forehead and at the base of my skull, like a fog rolling in. I know the sensation comes from nerves and blood vessels, but it feels like a creature with its own will pushing itself through my skull. In the afternoon sometimes the pain gets so bad that I lock myself in a bathroom stall and cry.
A colleague puts me in touch with a woman who went through a similar unrelenting bout of headaches. She gives me the name of a neurologist who specializes in migraines and who has a packed schedule. I use her name to get an appointment, a visit that will cost $600; the office does not take insurance. The doctor asks me very specific questions—where does the pain originate, where does it go, when does it start, what makes it worse.
The doctor mentions several possible diagnoses: new daily persistent headache, migraine with aura, and hemicrania continua, a headache on one side of the head that never ends. He settles on "chronic migraine," a description that means I have at least fifteen "headache days" out of every thirty, though for the past several months I've had a headache every day. He explains that the episodic migraines I've had my whole life can develop into a chronic condition through medication overuse—all that Advil—or bad luck. The dizziness, the brain fog, the fatigue—they are likely related. Sometimes the migraines become intermittent again, he says, but sometimes they don't.
Throughout my childhood I asked my parents if my mother's illness would kill her. They told me again and again that it wasn't deadly, nor was it contagious. "Chronic," I was assured, was something you lived with for a long time.
I think of my mother's whack-a-mole symptoms, the mystery of her disease's genesis, the side effects of her medications. My mother's conditions aren't hereditary, but neurologists still want to test my blood for rheumatoid factor and other traces of autoimmune disease.
I shouldn't be surprised. Every body goes haywire. I think of my mom's empty days out of work, before she knew how to fill them. I think about what I might have inherited.
Headaches are one of the most common symptoms that patients report to their doctors, but their causes and manifestations vary so much that a diagnosis does little to help.
From the Greek hemi ("half") and kranion ("skull"), migraine is associated with severe, throbbing, unilateral pain; an aversion to light and sound; and nausea and vomiting, all of which is aggravated by movement. But migraine may include or trigger many other symptoms. An attack may be announced by sudden exhaustion, food cravings, a foul mood, or what is called an aura, a neurological phenomenon that disrupts a sufferer's vision with silvery squiggles and zigzags. For some a migraine might include extreme sensitivity to touch, partial blindness, vertigo, or the inability to speak. There are also vestibular migraines—attacks associated primarily with dizziness and vertigo—and abdominal migraines, when pain is instead felt in the stomach. Both of these may occur without head pain and can be bewildering to patients seeking a diagnosis. After an attack—which may last up to four days—many migraineurs suffer from a "post-drome," a period of several hours or days when they might feel listless, agitated, or depressed.
A migraine, writes Oliver Sacks, has "the essential features of being ill—of trouble in the body—without actual illness."
Although migraine symptoms have been described since antiquity, doctors still struggle to understand their cause. For much of the early 20th century, migraine was thought to be a vascular condition, something that could be treated by restricting blood vessels. Now, most neurologists argue that migraine is a disorder of the trigeminal nerve system, where overactive cells in the face and head respond to benign input (light, sound, smell) by releasing chemicals that transmit pain. But doctors still can't offer reliable relief.
The best treatment available is prevention, so my doctor tells me about possible triggers—stress, menstruation, sleeping too much, sleeping too little—so that I can do my best to change my behavior. Beyond that, treatment is a process of trial and error.
For several months, I remain calm. I get myself to work. I carry a green calendar where I record my symptoms, the progression of pain throughout the day, what I eat and how much I sleep—all to help me discern a pattern. I avoid common triggers: caffeine, sugar, alcohol, and chocolate, for sure, but also citrus, bananas, cheese, cold cuts, avocados, nuts. I omit dairy, just in case. Everything for sale in my office cafeteria, including the soup and the salad dressing, has MSG in it, so I pack my lunch. None of this offers relief.
I phone my doctor almost daily: to repeat my complaints, to ask for new prescriptions, to plead for relief. I have no privacy at my desk, so I make these calls in a small closet with a photocopier.
My colleagues try to understand. One sees me crying in the bathroom and tells me it will only make the headache worse; she holds me by my shoulders until I can control my sobs. Another tells me I need to do more yoga, that it's stress that's getting to me. Others ask me again and again if the doctors have figured out what's wrong. It's inconceivable to most people that this is it—there is no other, underlying condition. The headaches are the condition itself.
One at a time, I try more than two dozen medications to prevent or abort my migraines. I try anti-inflammatories, steroids, muscle relaxants, anti-histamines, beta blockers, calcium-channel blockers, SSRIs, tricyclic antidepressants, antipsychotics, anticonvulsants, and a medication prescribed to slow the onset of Alzheimer's. Nearly all these medications are sedative.
I try other treatments, too. I get IV infusions of steroids and magnesium. I have lidocaine injected into my scalp to numb the pain; instead of providing relief, it trickles down to the lower branches of my trigeminal nerve, so that I can't blink or move my mouth. I buy a $300 electrical device that I hook over my ears and connect to my forehead via an electrode for twenty minutes each day. It sends an intense tingling sensation across my forehead and over the top of my head to stimulate the trigeminal nerve. (Counterintuitively, this is meant to stop its overreacting.) I visit my neurologist every twelve weeks to have Botox injected into twenty-one sites on my face, scalp, and neck. I spend outrageous sums on treatments and therapies; it's all my money seems good for.
One advantage of being a woman with a neurological condition who has a mother with a neurological condition is that my mother and I take many of the same medications. When one of us tests something new, we compare notes.
I collapse under the side effects of my medication; my mom tolerates hers with grace and determination. For twenty years, she's been taking 200 milligrams of Topamax, an anticonvulsant that calms overactive neurons. It makes each of us lose track of our thoughts and trail off mid-sentence (its nickname is "dopamax"); I can't stand even 50 mg. My mom tells me that Lyrica, another anti-epileptic, and amitryptiline, an anti-depressant that can treat pain, made her sleepy but that she acclimated. I can't tolerate either for more than a couple of days. Over the course of many medications, I lose words, break out in rashes, become constipated, lose and gain weight, suffer low blood pressure, regain my teenage acne, endure a months-long urinary tract infection, twitch violently in my sleep.
Soon my mother suffers a new affliction: a buzzing pain that radiates behind her right eye and across her temple. It appears one day and never abates. It may be a form of migraine, or a new symptom related to her illness, or another thing entirely. I call her and she answers, mumbling, as though she had been deeply asleep. I ask if she's all right, and she says no. The new drug prescribed for the pain, an analgesic and anti-epileptic called neurontin, makes her feel like "someone has put a curse" on her. She can hardly talk or get out of bed. I ask if she needs help. No, no, she says, don't worry, it will just take some time to wear off. She has to wait it out, she says, and then she hangs up the phone.
Pain is a message from the body to the mind that something is wrong. Headache pain, though, is opaque, and its source and its message are hard to divine. There's no tissue damage, no trauma, no infection. A headache can alert one to something as sinister as a tumor, or it can come and go with a rainstorm.
A migraine attack blurs the distinction between "sickness" and "health." Headache, dizziness, nausea, trouble concentrating, fatigue, poor verbal skills—these symptoms could just as easily result from a hangover or a bad night's sleep. That the same symptoms can result from irresponsible decisions gives patients an air of culpability. The same can be said for many of the symptoms of chronic autoimmune disease, fibromyalgia, and chronic fatigue syndrome.
Joanna Kempner, a sociologist at Rutgers and author of the recently published Not Tonight: Migraine and the Politics of Gender and Health, writes that "people worry when they cannot fulfill their end of the so-called sick role, an implicit social contract in which sick people are given leave of their everyday duties, as long as they adhere to certain rules like seeking appropriate medical care and working hard to get better. But these obligations are difficult to meet when there is no effective treatment."
The easiest explanation for the onset of my condition is my self-medication with Advil, so that's the reason that I offer when anybody asks. (Never mind that I took the pills as directed.) I tell myself that if I strain through my fatigue to exercise, keep a consistent sleep schedule, or meditate each day, then maybe I won't be so sick. Susan Wendell, a Canadian sociologist with chronic fatigue syndrome, writes that this kind of thinking "may be part of a rationalizing rejection of one's former, healthy self, in order to adjust to a new body and a new way of life."
My most tender memories of being with my mother as a child take place in her bed. Her energy was limited, so we would read or talk together as she rested. Even when I was at school, I tried to share her suffering: on the playground I closed my eyes to picture her lying in bed, as if to check on her. At home I liked to stroke her hair back as she lay propped on pillows, like she did when I had a fever. I told her I wished I could be sick instead.
Because of my headaches, I soon find myself doing all the things I associate with my mother's illness. I miss meals because it requires too much energy to prepare them. I cancel social plans; I can no longer stand the noise of bars or parties. I get into bed as soon as I get home from work. I sleep for ten, sometimes twelve hours, and I'm still tired. I fall asleep anywhere and immediately.
On a February morning, I wake up early for another MRI. I'll go from the appointment straight to work, and I want to wear something elegant. I blow dry my hair and put on make-up. I want the technician to know I'm not a woman who sits at home in her pajamas all day.
As I pull on snow boots to walk to the subway, I realize very suddenly that I am not surprised to find myself in this situation: going from doctor to doctor, dragged down by the weight of my body. I have the uncanny feeling that I am reliving something I've already experienced, but really it's only what I imagined my mother's days were like. My mother knows the subtle humiliation of removing your clothes and waiting for a nurse to call your name.
Perhaps this is what happens to a woman when she grows up, I think. She might marry or have children, but then she gets sick. She struggles to keep up with work and chores and family and friends until she can't manage; she gives up her career. She trades silk blouses for hospital gowns. She spends her mornings in doctors' waiting rooms, her afternoons on the phone filling prescriptions and arguing with the insurance company.
This inheritance awaits many women. Almost 20 percent of women suffer migraines, and 75 percent of migraine sufferers are women. That same group of hard-to-diagnose and hard-to-treat diseases—lupus, rheumatoid arthritis, and multiple sclerosis, but also chronic fatigue, chronic headache and fibromyalgia—primarily afflicts women. "Women are more likely than men to be disabled by chronic illnesses," Susan Wendell writes, "and women (including women with other disabilities) suffer more ill health than men. Women live longer than men, but much of that extra living is done with a disabling chronic illness."
Wendell points out that those chronic conditions bring with them the kind of invisible impairments that can cripple a patient without appearing notable. "Pain and/or fatigue are major sources of impairment in many chronic illnesses that are more common in women than in men," she writes. It is exactly these impairments that are easiest to dismiss or misperceive as psychosomatic.
And doctors treat complaints about such conditions differently when they come from women. Kempner cites studies that show physicians prescribe less pain medicine to women than they do to men, even though women are more likely to suffer chronic pain. Other studies show that women are more likely than men to be prescribed antidepressants and tranquilizers—rather than pain medication—for their migraines. Add to this the fact that migraine is more likely to occur in people with mental health diagnoses like depression and anxiety, both of which are more common in women. All of this makes it hard to untangle migraine and other chronic pain conditions from stereotypes of female weakness and hysteria. The characterization perpetuates the notion of the migraineur-as-malingerer, the sensitive soul disabled by everyday disruptions.
Even Sacks isn't immune. He writes eloquently about the anguish of his own migraines, and yet he sees women with migraines as submitting to a natural order of things. "I have the impression that many menstrual migraines," he writes, "condens[e], as it were, the stresses of the month into a few days of concentrated illness, and I have observed, in a number of patients, that curing them (depriving them) of such menstrual syndromes may be followed by a release of diffuse anxiety and neurotic conflict into the remainder of the month."
My symptoms are such a hindrance and so unresponsive that I seek treatment—and third and fourth opinions—from other specialists.
My mom sends me to her pain doctor, a sweet-natured man with the ghoulish name of Dr. Hertz. On a Friday afternoon, I leave work early so Dr. Hertz can inject steroids into joints in my neck, a treatment that might block the nerve signals my brain misperceives as pain. My mother comes, too: after the procedure she tucks a blanket around me and passes me boxes of apple juice.
The injections don't change how much pain I experience, but the next day I wake up even dizzier, with the woozy sensation that my body is rocking in space. I feel like a balloon punching bag, the one that looks like Bozo the Clown, that you can push over again and again and never knock on his back. At the office, I walk along the corridor with my hand brushing the wall to keep my balance.
Next, I go to an audiologist to find out if the dizziness might be vestibular. She puts what looks like a virtual reality headset over my eyes and has me count aloud the red lights that flash across my vision. Next she blasts warm air into first one ear and then the other. It creates uncomfortable pressure in my ear canal and makes me feel as though my body is spinning backward. I grow nauseous and lose count, but she shouts at me to continue. Afterward, I go back to work.
The following week, another doctor interprets my test results. Nothing is wrong with my inner ear, he says. I'm suffering from migraine-associated vertigo, and only the treatment my neurologist is already pursuing, however ineffectually, can help. There is nothing else he can do for me.
As the daughter of a sick parent, I was aware very young of the subtle yet consistent derision directed at the sick or disabled. The undergirding notion was that to live with physical limitations was to live a partial life: illness or disability precluded fulfillment or freedom or happiness. Wendell notes how common it is to hear people who are healthy and able-bodied say "they would not want to live if they had to use a wheelchair, lost their eyesight, were dependent on others for care." It made me angry—still makes me angry—that people think they can exert full control over their bodies, that their physical capacity results merely from an effort of will. A Nike shirt I saw recently: "Pain? Never Heard of It."
But the ill and their loved ones know that bodies do not always heal or recover. We are not always resilient. Many illnesses can be treated but not cured, and pain can only be managed. We know that disability isn't the result of bad luck or poor health: it's the inevitable transformation and breakdown of the body. The ability to ignore your body is a temporary privilege. We will all find ourselves in the position of patient and the position of caregiver, someday.
A year after my diagnosis, my boyfriend becomes fed up with my haphazard treatment, with the side effects. He's frustrated that my doctors can't chart a clearer path and criticizes me for trying too many medications without considering the consequences. I try to explain what I've learned, from watching my mother and now living it: that all medicine is guesswork, that doctors rarely admit when they encounter a gap in their knowledge, that neurology is so murky, that these kinds of chronic illnesses are neglected because they don't warrant drug studies. "Just wait until you're sick," I tell him; then he'll understand. He reacts as if I've wished him harm.
It's hard to believe that a headache, something so seemingly benign, can so radically and quickly change your life. But if you read about migraine prognosis—in neurology journals, on chronic pain blogs, in the New York Times—you'll find studies indicating people with migraines have poorer social interactions and emotional health than patients with asthma, diabetes or arthritis.
This is hard to communicate when you appear to be young, healthy, and able-bodied. "To be recognized as disabled, we have to remind people frequently of our needs and limitations," writes Wendell of women who suffer from chronic, invisible disabilities. The struggle for recognition is constant, even among the most compassionate: "Some people offer such acceptance readily, others greet every statement of limitation with skepticism, and most need to reminded from time to time."
When the pain is terrible, I call my mom. She does her best to sympathize and soothe.
Months pass and my commute becomes unbearable. It feels as though I'm always carsick. The tilt of the subway as it turns makes my stomach contract, the back of my head clench. So does perfume, a loud conversation, the tinny leak of music from earbuds. I wear earplugs on the subway to stifle the sound of metal wheels on metal tracks; when I can't get a seat, I fall asleep standing up.
The calls to my mom multiply—I can't keep up at work, I can't get on the subway, I can't get out of bed, I can't stay awake. My mother sighs. "If only you knew how much I wish I could take this pain away from you, take it into my body," she says.
Only once does she tell me that some days she thinks, Oh God, did I give this to her? "And if that's true," she says—and then she cocks her hand like a pistol and holds it to her temple.
After a year of experiments and procedures, between doctors' appointments and my fatigue, I'm having trouble keeping up with my job. When the vertigo is at its worse, I tell my mom I can't do it anymore.
To activate my employer's disability insurance, my neurologist fills out a form testifying to my impairment. She writes, "Patient suffers from chronic migraines, with severe disabling pain, disabling vertigo at times, and side effects from medications used to treat migraines. Onset > 1 year ago, probable duration lifelong." Probable duration lifelong.
She attests that, at times, I will not be able to work full time or perform any work at all. She indicates that I have at least four intense episodes per month, each lasting several days. She lists my treatments—"physical therapy, Botox injections, preventative medication"—and signs her name on the line.
My neurologist agrees that I need acute care, but hospitals in New York City, where I live, don't offer inpatient treatment for migraine. I arrange to go to a clinic in Chicago. I buy a plane ticket for my mom and one for myself.
At the Diamond Headache Clinic, I meet the people who suffer from the catalogue of headaches I've read about. There's the young woman around my age who woke up one day—December 21, 2010—with a headache that never went away. Her drug regimen at the clinic includes Haldol, an antipsychotic that leaves her sleepless and edgy. At night she walks up and down the corridor ringing her hands, tears streaming down her face.
There's the man who suffers from cluster headaches, which are said to be the most painful kind. Every afternoon the headache arrives at the same time. He sucks at an oxygen mask and moans so the whole unit can hear him. He's the only man on the floor and, my mom remarks, not necessarily suffering more than anyone else; it may instead be that he just suffers most loudly.
Then there are the women who have been to the clinic several times before. Some are middle aged and look forward to menopause because it may relieve their headaches. Others are so impaired they have never been able to move out of their parents' homes. There are teenagers with migraines and seizures, adults with head trauma. There's the little boy who has suffered headaches since he was 4.
In the hospital I meet a new version of my mother, too. Although her presence is peaceful and calm, she speaks up to ask the doctors questions. She stops apologizing for the space she takes up.
When my blood pressure plummets, my mother's new assertiveness forces me out of bed. I wheel my IV pole down the carpeted corridor; my mom calls it "walking the dog." My body is so sapped that I don't need to adjust my pace to accommodate her limp. We pause and examine the hospital art—posters of work by Georgia O'Keefe, Paul Klee, Kazimir Malevich—so I can catch my breath. We admire a Rothko with a swath of deep indigo across the top.
One morning, as my mom sits reading, I see a spider just behind her right shoulder. She is phobic and I don't want to alarm her.
She obeys and then watches my eyes as I find a tissue.
"Was it big?" she asks.
"No, but it was there."
"How dare it invade our haven."
I return home to Brooklyn and eight weeks of disability leave. I spend the morning reading or writing, the afternoon napping. I begin to write this essay—not to glean any new understanding per se but to find the words to describe this experience. I have a new brain to get acquainted with. There is an additional layer between the world and me, obscuring my senses, like I'm wearing socks on the beach.
I learn that to function well I need to sleep ten hours every night. I need to schedule time to rest every afternoon. A doctor's appointment and food shopping can become an entire day. Sometimes I can't even manage that.
And so time contracts. My days contain fewer hours. I choose among the obligations and pleasures I used to enjoy all at once, every day. I try to live a quiet, careful life.
The flip side of time's preciousness is its emptiness. Long hours in bed, even when needed, are tedious. I can no longer treat time as a resource to exploit.
When I return to work, my employer is required by law to make "reasonable accommodations" to my disability. The HR department asks my doctor to fill out a form designating these, but what can reliably ease or prevent symptoms that are so hard to predict? My doctor recommends rest breaks, maximum daily hours, dispensation to work from home. What if my accommodations just amount to fewer hours working? I feel ashamed, as though my needs show my failure to bear up under average hardship.
At the same time, I want to claim the accommodation and protection of disability. Thirty-eight million people in the US experience migraines: isn't what I experience in the range of normal? But I'm afraid to call myself disabled. Robert McRuer writes in Crip Theory, there is "no way of saying 'disabled' without hearing 'cripple' (or freak, or retard) in its echo."
Legality aside, my body can't meet the requirements of regular, full-time employment. Before, I knew I could push myself—work long hours, sleep less, stay focused—but that isn't possible anymore. I can't work harder or faster, and there is no will that can withstand my fatigue and my dosed brain. I can only surrender.
To this day, I guard a hidden hope that I will receive a new diagnosis, one that clearly explains the severity of my symptoms. I fantasize that a different diagnosis, even one as complex and debilitating as my mother's, would better resolve the constellation of my symptoms, or lead to a clear course of treatment that might return me to my former self.
There are still days when I think I dreamed this up, that I caused or created it. I've become so accustomed to pain and fatigue that I forget there are clearer, more energetic days. The career I imagined for myself isn't possible anymore, but I do have a job now. It doesn't require me to commute, work regular hours, or check in every day, but it does, crucially, provide health insurance.
Chronic migraine creates all sorts of discomfort and anguish, but what has been hardest to bear is not knowing what this means for my future. I don't know how debilitated I'll be or who will take care of me or what I'll do about money. If I have children, they, too, may experience the helplessness and angst of a mother absent or unavailable because of illness.
I had my diagnosis immediately. Learning to cope with it takes years.
Illness is the space where I came to understand the limitations of my being. It's a lesson we all learn but one I learned harshly and twice, first watching my mother and then enduring my own suffering. Now I know that I can lie down for hours without moving. I can meditate. I can stare at the wall and not despair. If I discovered something redemptive in this experience, it's that capacity for stillness.
In Chicago, I asked my mom how I could face this future. She didn't miss a beat. "You will make a new life for yourself," she said. I believe her.
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