We talk a lot about #OwnVoices in fiction, but less so I think in academia, where we are all supposed to be neutral. In both race, sexuality, indigenous and disability studies, however, the mantra “Nothing about us, without us!” is beginning to have an effect.
A few months ago I spotted this title. I felt actively sick when I saw it, but I spoke to my friend Kenneth Kidd, and he put me in touch with The Lion & the Unicorn, and when my review is available I’ll link to it here.
Full disclosure: I began to get sick around the age of 6 (“tummy troubles”), was having serious fainting attacks by the age of 8 (three days in isolation also introduced me to The Lion, the Witch and the Wardrobe so some good came out of it) and by 12 had a diagnosis from the coldest, most dismissive doctor I’ve ever met. The year I turned 14 was a disaster: occasionally I get asked about my rather spotty education and poor school record, to which the answer is “migraine”, but until recently I had to hide that under more generic answers as people never really “got” what I meant. I’d like to think that’s less true now, but Honeyman’s book suggests not.
This book impressed me as an academic, for its interdisciplinarity and for its research, but it also gave me the feeling of being recognised. Like all academic books it’s expensive, but there is a much cheaper e-book available And Update! the pb is coming out this month!
Interview with Susan E. Honeyman
Why did you decide to write this book?
I got tired of waiting for someone else to write it. I had casually read about migraine all my life with hopes of finding anything that might help, but I got frustrated by the seeming limitation of works to the self-help genre. Then, when I first read a testimony of child migraine I felt less alone. And interviewing others was amazing in that respect.
Experiencing migraine as a kid presents a unique constellation of problems, especially confusion about why it is happening. I hope that in the future more ethnographies with a larger sample size will come out. In fact I am starting a new book series (Cultures of Childhood) and hope to be able to facilitate more ethnographic studies of child cultures (of pain, of institutionalization, medicalized identities, alternative education… oh the possibilities!). One thing I didn’t find through my interviews but wanted to is more folkloric evidence of superstitions and obsessive-compulsive beliefs we invent in attempting to control pain. Migraine gives you a lot of time when bedridden alone with pain and your thoughts.
Another reason I convinced myself to write the book was the naïve hope that it would be therapeutic for me. It wasn’t. Not at all. As I mentioned before, sometimes I wrote with a plastic bowl nestled between my arms kept in place by my body and the keyboard. The writing usually made me nauseated, and learning about Jeffrey Lawson was actually retraumatizing for me. It pierced right through my resolve to not know what interventions had saved my life at birth, and what happened in the 24-hours before my parents could even see me. Let me just put it this way: when I had my first MRI and discovered, with great embarrassment, that I was extremely claustrophobic, my mother matter-of-factly attributed my fight AND flight reaction to my “difficult birth.” I didn’t believe her until I read about Jeffrey Lawson. Now I know exactly what she meant and don’t want to know any more.
What makes you most angry about the current situation?
The ease with which adults suspect children of lying…I was still so frustrated about this issue that I wrote more about how this disproven prejudice affects gravely ill children in my most recent book, Perils of Protection. Even my neurologist asked, when I told him about my book on migraine, “but how do you know the kids aren’t faking it?” It is terribly offensive. Children know when they are being called liars, and they know what an insult that is. But it also blocks kids from having any say, contributing to their own healing and coping through self-report. In short, it makes them less safe.
What do you want people to take away from this book?
I want families, schools, and medical personnel to stop denying that children can and do experience dysfunctional pain. Child migraine and chronic pain are more common than often thought, but, like any invisible impairment, they can be ignored or worse. Though we can’t possibly understand a stranger’s pain without report, we can become more aware of the ideologies we live by.
No one is immune to compensatory defense mechanisms. For example, someone dies and we ask how old they were (this is to soothe our own fears: “oh, he was older than me”); someone gets lung cancer and we want to know if they smoked, not consciously blaming the ill but certainly trying to contain that illness in a reality outside of our own. We can be more aware of our compensatory defenses and break such reasoning with empathy instead. And if you catch yourself knitting your brows in preparation for a pity party, just don’t.
Do you think migraine pain in children can cause PTSD and is there grounds for offering support along these lines?
This is one of the issues that most surprised me in interviews (which I later confirmed by consulting studies): many migraineurs told me that the anxiety of having an attack was almost as debilitating as the attacks. Only one interview subject spoke of flashbacks to the brain injury he’d sustained two decades before, after which the migraines began.
Personally I had never experienced much anxiety surrounding the attacks, but I realize that one of my bad habits (poor concentration, selective memory) has actually helped me in this department. I have a massive capacity for denial. Even after four decades of migraine I’ll catch myself saying things like “hmmm, 8 days without a headache, I think (whatever new supplement I’m trying) is working!” or “11 painfree days—that’s a record. Migraine season* must be over.” Of course saying such things doesn’t make them true, but they do keep me hopeful and feeling proactive.
*Of course there is no such thing, though I read somewhere that dropping barometric pressure in autumn can affect them, and certainly migraineurs can tend to have attacks in response to similar weather. January is always my worst month and October the best!
You describe What Katy Did, by Susan M. Coolidge, as teaching docility as a way of managing pain. But that book probably saved my mental health as the only thing I read that reflected my experience (I also managed to hurt my back in much the same way when I was a teen). I’m wondering if there is a book you encountered as a child that did the same for you? Ie acknowledged you and gave you a paradigm or model for coping?
For this a have a pretty dull response: honestly, I didn’t read for pleasure as a kid because I was a remedial reader with processing problems, perhaps from my encephalitis as a kid. Reading was such hard work that it gave me more headaches. I didn’t read for pleasure or bibliotherapy until my 30s when I finished my Ph.d. I still am a remarkably slow reader. But there are all sorts of alternative ways we can collaborate in ability. My partner usually starts reading off subtitles unprompted when we are watching a movie and they scroll too fast—so I can switch to audio, follow the movie, and not keep pausing. It works pretty well!
Thank you very much Susan.