HopeAt the beginning of Migraine Island! I promised to honor the uniqueness and dignity of your experience. I've taken pains to make it clear throughout that I do not pretend to know whether the answers I've found for me are the ones that will work for you.
My raft took me years to make, and though I am no longer stranded on Migraine Island, it is close enough at my back to keep me humble. My life still isn't "normal," many stimuli that "should" be easy for me still aren't, and I don't know whether this will ever change.
What has changed is my ability to rise up to greet the morning, day after day, and keep moving forward throughout, because the migraine monster is no longer attacking me in my sleep or when my defenses are down. I can make plans for the future again. I have found work I can sustain without compromising my health, and I am once again a "productive member of society." But none of these visible changes are the most important ones.
The most important change in my life is this one: I've made peace with my body. The hopefulness of this transcends even my escape from Migraine Island. My appreciation of the innate physical strength of our human bodies has deepened and expanded. So when my body starts to say "no" to an input, I gladly stop and listen. I value this information, and the wisdom of the body it represents.
I've given up trying to conform to "normal" life when it hurts me. Other people might spend every available moment with their eyes glued to the screens of their phones. I don't. They might find clickbait alluring or gravitate to wherever the bullhorn is loudest. I don't.
As the crowd surges in that other direction, I stay standing where I am. I watch as the birds settle back into the trees and the setting sun kicks up a breeze to tickle my face. I notice the contours of the place, its lines shaped by geology and time and human invention, and wonder about the many feet that have trammeled this patch of Earth. I notice a different kind of beauty, here where it's quiet and calm. The sustaining rhythms of life on my planet. It's rich and vibrant and full of possibility.
Looking around, I see, too, that I am not alone. Many of us are here, in this quieter place, living fully, and we're not suffering much at all. I wonder what I'll learn next.
Sometimes, I miss the excitement of being "in the middle of it all." I venture farther into the throng, feeling the thrum of roiling humanity, meeting and greeting and learning and sharing with my kind. And then, before the music gets too loud, I retreat to my quieter place. With a sigh of relief, enriched by my adventure, I mull over each foray, the sound of each voice. I take the time to let each resound in my mind.
It turns out we are all, each of us, always "in the middle of it all." Life on this planet is the "all" that we're in the middle of. Life is always happening, everywhere, and engaging it is what we animals inevitably do. And so, fundamentally, it is not really possible to be left out of "it all", not even while stranded on Migraine Island. There, as elsewhere, we must truly embrace our own bodies, who in their living have grown so terribly upset. We must listen to them, as closely as we can. In this is the wisdom of staying, and of going, too.
And you? Where are you at? If you are still stranded on Migraine Island, know, at least, that you are not truly alone. Many have climbed its rugged paths and dodged its hazards. Some have even managed to make it a home they can endure. Still others have found their way off. My hope for you is that, whether you go or stay, kindness and comfort will be with you in all that you do, and that whatever that is, you will thrive.
BooksBooks have played an important role in my migraine recovery. Here are a few that have been particularly helpful:
- The Keeler Migraine Method. Cowan, Robert, New York: Penguin, 2008.
- Many books discuss the ins and outs of managing migraine. This is one of the more solid, credible, and practical that I have read, though it is a little dated now since research into the condition continues to teach us more.
- The Migraine Miracle. Turnkett, Josh, Oakland: New Harbinger, 2013.
- I generally make it a rule to avoid on principle any book or product promising a miracle. I only bought this one after my headache specialist recommended it. The reason it is on this list is not because following the book's dietary advice produced a miracle in my life (it did not), but because the author, a neurologist, describes a model of understanding migraine that I found contributed to my recover. His theory about the central role of the hypothalamus in migraine's unique symptoms was particularly relevant to me. And, while I no longer follow exactly the diet he describes, I have done well on one that is inspired in part by it.
- Cannabis Pharmacy: The Practical Guide to Medical Marijuana. Backes, Michael, New York: Black Dog & Leventhal, 2014.
- This book is a great primer for those of us not already familiar with marijuana culture but who want the medical benefits of the plant to treat migraine, preferably without the underworld flavor. It is well-written, helpfully illustrated, and includes extensive footnotes with citations to the medical and scientific literature supporting the medicinal benefits of cannabis.
- The Highly Sensitive Person: How to Thrive When the World Overwhelms You. Aron, Elaine N., New York: Harmony Books, 2001.
- It was with great reluctance that I had to admit I was probably an HSP after taking this test, but reading this book taught me to be proud of my sensitivity. Dr. Aron explains that high sensory processing sensitivity is a genetic trait possessed by 15% or even 20% of us, and that this is a good thing for everyone. Learning to respect this genetic trait in my body gave me an immediate advantage in my struggle with migraine. Even better was combining this knowledge with acceptance that I also happen to be High Sensation Seeking. This explained why managing migraine for a long time had felt like two tomcats battling inside me: my sensation-seeking side craved novelty and excitement, while my HSP side was overstimulated by too much of it and wound up stranded on Migraine Island. Learning to honor both sides of me while keeping them in harmony has been fundamental to my recovery. Dr. Aron's website includes updated research and more tools.
- Managing Pain Before it Manages You (Third Edition). Caudill, Margaret A., New York: Guilford Press, 2009.
- When my migraines "went chronic," that is, became the norm in my life, I was at a loss how to adjust. I simply was not wired to be chronically ill (is anyone??). This book taught me how to take care of myself as a "sick person." These are lessons we never want to have to learn, but can be so liberating once we finally do.
- I Thought It Was Just Me (But it Isn't). Brown, Brené, New York: Gotham Books, 2008.
- Shame over my health struggle at one point threatened to cripple me almost as badly as the disease itself. This book helped me find my spine again.
- Get Out of Your Mind & Into Your Life: The New Acceptance & Commitment Therapy. Hayes, Steven C., Oakland: New Harbinger, 2005.
- As I describe elsewhere, chronic and severe migraine management requires an extremely strong head game. This book gave me essential tools to stay mentally strong through the ordeal.
More Online ResourcesElsewhere I discuss a few online tools that have been helpful to me in my journey.
I am not a scientist or medically trained, but I still read and try to understand the scientific literature on migraine-related research. If nothing else, it helps me form questions to ask my headache specialist. PubMed is an amazing public resource to locate peer-reviewed scientific literature related to migraine or any other health condition.
ConsumerLab is my go-to source for navigating the useful, confusing and sometimes outright fraudulent world of nutritional supplements.
Many other migraine-related resources exist online, particularly blogs penned by fellow migraineurs, like Somebody Heal Me, which used to host a regular "migraine blog carnival" that brought together many voices on the web, and The Daily Headache. The latter's Resources page includes links to headache specialists, advocacy groups, and more blogs. (If you write or enjoy a particular migraine-related blog and would like me to post a link, send me an email and I will check it out.)
Migraine.com has become a useful hub for many migraine-related resources, including a number of bloggers (like the author of The Daily Headache, above). In fact, Migraine.com has been so successful, it can sometimes seem to have a monopoly on the topic. Perhaps on the site you will be able to find a list of its editorial staff; I couldn't. This is significant to me because its content sometimes promotes specific products and services, and as a consumer I like to know who is paying for and potentially benefiting from that. Nevertheless, the site includes a wealth of good information and it's worth checking out for anyone affected by migraine.