Kathleen O’Shea recently published So Much More Than a Headache: Understanding Migraine through Literature. We asked Kathleen a few questions about her journey living with migraine disease and her decision to write a book.
Can you tell us about yourself?
I have been a professor of English at Monroe Community College in Rochester, NY, for 35 years and a migraine sufferer for 44 years. I live with my husband, Ed, a retired English professor, my two beautiful golden retrievers, Oliver (named after the poet Mary Oliver) and Gretta (named for a character in James Joyce’s novella, “The Dead”), and our cat, Gato in Rochester, NY. I love travel and adventure (I’ve been dogsledding in Eli, Minnesota, when it was minus 45 degrees, walked glaciers in Iceland, and rafted in the ANWAR in Alaska).
I am a 49-year Buffalo Bills and New York Yankees fanatic, love the arts, classical and rock music, and, of course, love to read. I have lived with chronic migraine for nearly twenty years and was recently diagnosed with POTS, an autonomic disorder. Interestingly, I have also recently learned that my serious experience with endometriosis, which led to a full-hysterectomy in my mid-thirties, is a possible comorbidity of migraine.
When Did You Get Your First Migraine Attack?
I think everyone remembers his/her first migraine attack; mine was when I was 14 and camping with my family. My brother and I were in a recreation hall, watching, of all things, a Charlie Chaplin film, when suddenly (no warnings that I recall), I thought my head was going to explode; the pain was unrelenting and overwhelming. My brother and a couple of other kind strangers helped me back to our campsite, but my parents were at a loss for how to help me. So this day began a long, hard journey for my family to find some help and answers.
Keep in mind, 44 years ago, little was known about migraine and even less known about how to treat it. I went to specialist after specialist, but there were no medications created for migraine, so I was put on one powerful medication after another, each of which made me so ill.
Twenty-two years ago, though, I was referred to Dr. Joseph Mann, a wonderfully compassionate, always encouraging headache specialist with whom I found real medical support and effective treatment; I was blessed to be under his care for 16 years before his retirement in 2016. (My book is dedicated to Dr. Mann).
What made you want to write this book?
I was in the middle of an intractable migraine for almost three months; I feared it would take permanent residence. I was helpless, feeling scared and lonely. No one seemed to fully understand that migraine is not “just a headache,” that it affects the person’s entire being. Dr. Mann had retired several months earlier, and I had long relied on his constant reassurance that there was always something more we could try.
I clearly recall one day at work, having come back from teaching, when I realized I needed to turn to what I always have in times of grief or crisis— I needed to read some literature! So, I went to my office to re-read Joan Didion’s essay “In Bed,” which had found me when I was in graduate school; it was the only piece of literature I knew focusing on migraine.
After re-reading the essay, I closed my office door and just sobbed— remembering that somebody does “get it.” I also realized that there must be many writers who have had migraines, and the research began. When finally discovering there was potential for an anthology and learning that no such work seemed to have yet been written, I thought long and hard about who my audience should be and whether I had what it would take to edit such an anthology.
I researched author after author for months, ones who had either suffered from migraine or created characters/personas who did. I first decided to write an essay of my own, which appears in the book– “I Know Upon Awakening.”
I wanted (want) migraine sufferers, their families and friends, and medical professionals to locate even that one piece of literature that moves them, makes them feel less alone, educates them, and creates empathy; I had never really set out to write a book.
Slowly, I discovered thematic patterns in the texts I was reading and found the perfect “place” for sharing it: Kent State University’s Literature and Medicine Series. Fortunately, they agreed with my proposal, and three years later, I was able to hold my first copy.
I hope to demonstrate through this collection that literature, like all the arts, offers to its reader subjective and imaginative experiences that we often find difficult to describe, at least in ways that aren’t clinical and objective.
Those of us who live with migraine in all its forms crave having someone understand, truly understand, what we live with– the often-excruciating pain we think no one else could possibly have endured–the losses, loneliness, and sacrifices directly and indirectly caused by this disease.
Literature captures the essence of all forms of joy and pain, and readers of all ages and backgrounds connect with grief and struggle. Sometimes, it helps us confront fear, hopelessness, and weariness. It cracks open the door on subjects we have buried, rationalized about, or avoided. It tackles the grey areas of life, grappling with subjects that aren’t black and white, often leaving us in inevitable ambiguity rather than clear resolution.
As with literature, this state of ambiguity is where many migraineurs find themselves. There are no simple solutions for migraine and its complexity of pain and suffering; there is no “cure.” The “answers” come in fits and spurts through the right combinations of treatments, lifestyle, and support. Literature speaks to all; it does so in a way that reaches us viscerally.
What Are Your Goals with this Book, and Who is its Audience?
My interest in putting together this anthology has been many-fold: I want to champion the power and value of great literature to speak about what people experiencing migraine feel that others cannot. I want to demonstrate the beauty of poetry, drama, essay, and fiction to capture the essence of migraine, even as we patients are evolving in our own understanding and treatment, and I want to reach those who have not experienced migraine firsthand to experience it through a persona, to see the ways in which the disease takes hold of a person’s (and family’s) entire life.
The book is targeted at several audiences: those with migraine and their family and friends, headache specialists, neurologists, those working in migraine clinics, and medical students taking literature and medicine courses.
I want to reach those who have not experienced migraine firsthand to experience it through a persona/character, to see the ways in which the disease takes hold of a person’s (and family’s) entire life. If those living with this disease feel less alone and more certain of shared experience, they will also greatly benefit from their loved ones, employers, and medical professionals having a place to turn to better understand the experience of migraine, its many manifestations, and the diverse paths it takes.
Through the discovery of literature, we all gain empathy. Our larger society needs to develop better understanding of migraine disease and to empathize with the life a person living with this debilitating illness. I have been blessed with a supportive family and friends who have always sought to better understand migraine and to discover ways to help me cope. Too, I realize how fortunate I am with my medical “team” since there are so many medications, treatments, and medical professionals involved in the care of migraine. Certainly, not all patients have the same supportive, compassionate headache specialists, neurologists, physical therapists, and chiropractors; I’m very mindful of that problem for so many.
My hope is that this collection offers those with migraine some solace in knowing they are not alone, some comfort when they feel weak and helpless in their pain, some assurance that so many others have traveled their path or one close to it, and, ultimately, some recognition of the moments of appreciation they feel when experiencing “time off” from the disease.
For those studying medicine, pain, and literature, my hope is that this collection will offer what the scales, whether the “McGill Pain Questionnaire” or the “Rate My Pain” form in the typical waiting room, cannot. These objective check-off boxes we fill out so routinely cannot capture pain, the physical and psychological effects of headache, and the multitude of side effects patients live with from many preventative, acute, and rescue medications– our individual narratives.
What Has the Response Been to Your Book Has Surprised You?
Having a book published in the middle of COVID is far from ideal in a variety of ways; even so, I think the book is achieving its intent—reaching those who need it, who are desperate for others to “understand” or at least want to learn what living with this disease is really like. The most difficult aspect of “getting the book out there” so that those who can most benefit from it can learn of its existence has been the idea that in trying to do so, I am self-promoting. What I hope people realize is that I will never make a dollar on the book (and never intended to), and that acquiring permission to use the work of other authors is very costly. In fact, without the early financial support and belief in the project from Dr. Frederick Godley, President of the Association of Migraine Disorders, this book never could have been completed; I am forever indebted to him.
Migraine is such a complex disease, and while we are now far more hopeful and grateful for the specific research now devoted to it and the many new CGRP and non-pharmaceutical treatments available, it remains incurable and difficult to treat because of its complex symptoms and individual symptoms– Remember, though, that we are Nightriders:
The rider knows the eyes
Will see again, calm;
That the axe will lose its edge.
The solution is partly
To keep on riding… (Ewart).
Ewart, Gavin. “The Night-Rider.” So Much More than a Headache: Understanding Migraine through Literature.” Kent State University Press, Kent, 2020.