So Much More Than a Headache

Understanding Migraine through Literature

Kathleen O'Shea

• Publisher: The Kent State University Press
• Year: 2020
• eBook ISBN: 9781631014178
• Topic: Medicine
• Subtopic: Diseases & Allergies

"English, " wrote Virginia Woolf, "which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache.... let a sufferer try to describe a pain in his head to a doctor and language at once runs dry."

Despite Woolf's astute observation and the apparent dearth of writings on such subjects, editor Kathleen O'Shea has managed to gather a wide selection of helpful excerpts, chapters, poetry, and even a short play in this anthology—all with a view toward increasing our understanding and ending the stigma attached to migraines and migraine sufferers. Unlike clinical materials, this anthology addresses the feelings and symptoms that the writers have experienced, sometimes daily. These pieces speak freely about the loneliness and helplessness one feels when a migraine comes on. The sufferer faces nausea, pain, sensitivity to light, and having the veracity of all these symptoms doubted by others. O'Shea, a professor of literature and a migraine sufferer herself, also includes an original essay of her own reflections.

Offered as an alternative not only to medical writing but also to self-help books and internet blogs, So Much More Than a Headache addresses a real omission in the available works on migraine, provides a resource for those who may have underestimated the depth and range of writing on this subject, and challenges the cultural bias that dismisses migraine as "just a headache."

PART I

What It Feels Like

Introduction

If you are reading this anthology as a migraine sufferer, you will be acutely interested in the works in this part, which describe so directly and powerfully the symptoms and condition, the phases and cycle of the total migraine experience. As we now know, this disease varies greatly among those who share it. While some migraineurs first experience more obvious warning signs such as significant neck pain prior to the actual “headache,” still others start the cycle with lesser-known warnings—excessive yawning, for instance; heightened sensitivity to sounds, light, and smells; and trouble communicating and putting sentences together. What most do share, then, is some sort of “warning,” known as the Prodromal Phase of a migraine attack. For others, the classic “aura” (visual experience) immediately precedes the actual headache attack.

The first works in this part focus around this early phase of the cycle. Several works that follow capture the essence, the visceral experience of the actual migraine attack, the kind of intense pain that has long been determined to be so difficult to capture in words.

Jean Hanson’s “The Lightning in My Eyes” and Claudia Emerson’s poem “Migraine: Aura and Aftermath” speak to the 20 percent of migraineurs who experience the aura prior to a migraine attack. Linda Pastan’s “Migraine” immediately immerses us with the fractured sensory experience:

Ambushed by

pins and needles

of light … by jagged

voices … by strobes …¹

The “headache” phase, where most suffer with extraordinary pain, varies in length from hours for some people, to days or even weeks for others. The symptoms that accompany the head pain include nausea and vomiting, sensory sensitivity, body and mind fatigue, loss of some cognitive function, numbness, eye and neck pain, and so many more. The literary works that describe this phase, including Marilyn Hacker’s “Headaches” and Iman Mersal’s “I Describe a Migraine” are charged with fierceness—warlike, violent imagery and fragmented lines and line breaks, capturing the utter chaos sufferers feel in their brains and body:

Tortured syntax, thorned thoughts, vocabulary

like a forest littered with unexploded

cluster bombs, no exit except explosion

ripping the branches.²

The final works in this part take us into the last phase, the Postdrome Phase. After the piercing headache has lifted, at least somewhat, most migraineurs commonly experience what feels like a “hangover.” Again, the symptoms and longevity of this last stage vary significantly, though many share the “migraine fog,” a heaviness, and exhaustion. For those with chronic migraine, the cycle moves in and out of and back and forth among these phases; the cycle seems to go on and on, with the migraine event rarely fully lifting. Looking as far back as medieval poet William Dunbar’s “On His Heid-ake” we see the symptoms we well recognize: “Though I tried to start writing, / The sense was difficult to find, / Deep down sleepless in my head, / Dulled in dullness and distress.”³

The writers in this part have taken the experience of migraine and transferred it to a medium that allows the sufferer and the nonsufferer to connect more meaningfully. If you are reading “What It Feels Like” as a family member of one who suffers from a migraine—spouse, partner, sibling, parent, or child—you will find in these selections a way to help you read differently and more accurately the person in your life. For example, Paula Kamen, in her essay “Down the Rabbit Hole,” describes how, in addition to the many triggers of migraine, stress is a major trigger, though our culture expects that someone experiencing stress will be able “with the proper discipline” to control that emotion: “The pain is easily triggered by external and internal forces, such as stress, which are often mistakenly labeled the root cause. All this confusion is further compounded by the multiple forms that migraine takes, all theoretically originating from one basic problem: a neurological dysfunction in the brain stem.”⁴ After reading her essay, you may be more compassionate, knowing that it’s not the emotional outburst that is caused by a lack of moral discipline or control but rather the deep disease that often masks itself under more familiar behavior.

As a person close to the sufferer, you may develop acumen for detecting patterns of triggers and warning signs, some of which the migraineur herself may not yet recognize. For example, as Jean Hanson notes in her essay “The Lightning in My Eyes,” often it’s a husband who notices the early symptoms before you do: “a certain posture in your sleep and a slowness in your reasoning,” or, as she also explains, “Your sister hears it in your legato voice: There’s not melody, she says, you’ve gone flat.”⁵

Practitioners (headache specialists, general neurologists, primary care physicians, and students studying medicine) will benefit from reading about the widespread, not always immediate, symptoms of migraine that run throughout the works in this part. Gaining these insights might lead them to more compassion and directed questions for patients; they might encourage them to create a physical environment more conducive to the needs of migraine sufferers. Laurie Batitto Bisconti’s “The Patient’s Perspective: A Friend Like No Other” shows, from a patient’s point of view, the fierceness and constancy of chronic migraine. The fictional rendering of Nietzsche, in Irvin Yalom’s “When Nietzsche Wept,” records the astonishment of Dr. B. when he realizes for the first time, “such a situation—the majority of one’s days are torment, a handful of healthy days a year, one’s life consumed by pain.”⁶

General readers will benefit from learning more about living with episodic and chronic illness. Often, people look at migraineurs differently and largely without understanding. The sufferer knows the public stares when she has trouble coming up with words, has difficulty putting a coherent sentence together, or is constantly pushing on a specific spot on the side of her neck. The loss of cognitive function, the fog that takes over, in stages other than the full-blown migraine, the hangover from the full-blown migraine—all of these additional symptoms are commonplace for the sufferer but appear to the outsider as strange and often alienate the sufferer from friends, colleagues, and the general public.

Anna Leahy’s essay “Half-Skull Days,” one of the two essays given prominence by beginning and ending the anthology, beautifully captures this stressful, anxiety-producing aspect of migraine for so many sufferers and those around them:

The staved-off migraine’s disorientation has left me aware of my own incoherence, my inability to track time accurately or to guess what I might say next, or not be able to say. When I couldn’t think of the word scale, upon which I had slammed my toe and made a racket in the bathroom only moments before, I pantomimed stepping onto the scale and looking down to see my weight. But even my husband is not used to this sort of communication and shrugged; at least he was no longer worried that I’d injured myself. I would not call what I felt in this semi-articulate moment pain, but I was suffering.⁷

All audiences will benefit from learning and feeling the joy and subsequent fear the migraineur experiences when, after days, weeks, or months of being caught up in the migraine cycle, nearly forgetting what it’s like to feel “good and normal,” the cycle lifts, fully “breaks,” and often brings the person with migraine a euphoric feeling that takes over her whole self:

What’s not invisible is the ecstasy of waking up and knowing right away that the migraine cycle has broken; I lift my head on these days feeling like a real force has moved out of my brain and body; suddenly, I’m me again. Do some people wake up this way most days? I never have more gratitude and mindfulness than I do when I experience this “lift.” I pay attention to all the beauty of the day, and I have energy because now I can live rather than exist—at least for this moment.⁸

These are the days both the migraineur and all of those close to her live for.

NOTES

1. Linda Pastan, “Migraine,” in An Early Afterlife (New York: W. W. Norton, 1995), lines 1–4.

2. Marilyn Hacker, “Headaches,” from A Stranger’s Mirror: New and Selected Poems: 1994–2014 (New York: W. W. Norton: 2015), lines 5–8.

3. William Dunbar, “On His Heid-ake,” in The Poems of William Dunbar, ed. W. Mackay Mackenzie (London: Faber and Faber, 1932), lines 7–10.

4. Paula Kamen, “Down the Rabbit Hole,” in All in My Head (Boston: Da Capo, 2005), 23.

5. Jean Hanson, “The Lightning in My Eyes,” in A View from the Divide: Creative Nonfiction on Health and Science (Pittsburgh: Univ. of Pittsburgh Press, 1998), 43.

6. Irvin Yalom, When Nietzsche Wept (New York: Harper Perennial, 2003), 71.

7. Anna Leahy, “Half-Skull Days,” The Pinch 32, no. 1 (2012): 244.

8. Kathleen J. O’Shea, “I Know Upon Awakening,” in So Much More Than a Headache: Understanding Migraine through Literature (Kent, OH: Kent State Univ. Press, 2020), 141.

Warning Signs

Migraine

LINDA PASTAN

Ambushed by

pins and needles

of light … by jagged

voices … strobes …

the sanctuary is taken

from within.

I am betrayed by

the fractured

senses. I

crouch on the

tilting floor of

consciousness, fearing

the eggshell

skull won’t hold,

will crack,

as the lid is tightened

another implacable

inch. I would

banish every

blessing—these

shooting

stars … the future …

all brilliant

excitations—just for

silence or sleep

or the cotton wool

of the perfected dark.

Patterns

OLIVER SACKS

I have had migraines for most of my life; the first attack I remember occurred when I was 3 or 4 years old. I was playing in the garden when a brilliant, shimmering light appeared to my left—dazzlingly bright, almost as bright as the sun. It expanded, becoming an enormous shimmering semicircle stretching from the ground to the sky, with sharp zigzagging borders and brilliant blue and orange colors. Then, behind the brightness, came a blindness, an emptiness in my field of vision, and soon I could see almost nothing on my left side. I was terrified—what was happening? My sight returned to normal in a few minutes, but these were the longest minutes I had ever experienced.

I told my mother what had happened, and she explained to me that what I had had was a migraine—she was a doctor, and she, too, was a migraineur. It was a “visual migraine,” she said, or a migraine “aura.” The zigzag shape, she would later tell me, resembled that of medieval forts, and was sometimes called a “fortification pattern.” Many people, she explained, would get a terrible headache after seeing such a “fortification”—but, if I were lucky, I would be one of those who got only the aura, without the headache.

I was lucky here, and lucky, too, to have a mother who could reassure me that everything would be back to normal within a few minutes, and with whom, as I got older, I could share my migraine experiences. She explained that auras like mine were due to a sort of disturbance like a wave passing across the visual parts of the brain. A similar “wave” might pass over other parts of the brain, she said, so one might get a strange feeling on one side of the body, or experience a funny smell, or find oneself temporarily unable to speak. A migraine might affect one’s perception of color, or depth, or move...

Table of contents

• Cover Page
• Halftitle Page
• Title Page
• Copyright Page
• Dedication
• Contents
• Preface
• Acknowledgments
• In Bed
• Part I: What It Feels Like
• Part II: What People Don’t See: The Invisibility of Migraine
• Part III: It’s Just a Headache?
• Part IV: It’s a Lifelong, Full-Time Job
• Part V: When It’s Gone …
• Half-Skull Days
• Permissions Acknowledgments