Dear beloved Brain Storm readers,
Things have been rather quiet on the blog. I’ve been using up all my writing energy to GET PAID, which isn’t so bad. If you’d like to check out some of my recent stuff about living with migraine, this is where to look (I’m particularly fond of the most recent post “Migraine, a.k.a. the Amorphous Blob”):
But today I am inspired to post on the ol’ personal blog for good reason. Today, I think I am finally comfortable announcing that I have transitioned from “chronic migraine” status, to episodic.
What this means is that I have gone from having disabling pain nearly every other day, to having only 3-6 disabling attacks per month, and that’s pretty fucking awesome.
While this is certainly reason for celebration, it is also maybe not as simple as it sounds.
I have actually had fewer than 15 — the number of migraine attacks per month that defines migraine as chronic — for quite a while now, but I’ve been reluctant to stop using the label because every moment of every day of my life still involves never-ending self care and careful decision making. Also, 3-6 attacks might still mean 5-8 days of significant disability per month. So to say “I am a person with episodic migraine” or “I live with frequent migraines” just doesn’t seem to fully convey what I’m dealing with. “I’m a migraineur” goes too far in the other direction, seeming to imply that it’s my job to have migraine. I’m a teacher, an artist, a singer, a freelance writer, but I don’t think I’ll ever refer to myself as a migraineur. The spoonie label comes closest to describing how migraines affect my life, and I’m happy that it’s gaining traction in the mainstream. But the truth is, by definition I have “episodic migraine”, and while it indicates major improvement (happy happy joy joy, etc.!), the truth also is that it’s probably harder than most people imagine by the label alone.
This acknowledgement of improvement, of a significantly better quality of life, begs the question, how did I get here?
It has taken years, and it has taken regular massage, acupuncture, chiro adjustments, yoga, meditation, supplements, drugs, free drugs, drug coverage, gifts of medical devices, expensive ear plugs, special glasses, pricey scent-free products, essential oils, special diets, workplace accommodations, and oodles of sick pay. And it still requires most of those things.
I got here because I am determined and I have forged loving, supportive relationships that have allowed me the time and space to properly grieve, yes, but also because I enjoy an enormous amount of privilege. Almost every single aspect of my treatment plan is available to me because of my socio-economic status, my union job, and the unearned white privilege that brought me to those things.
I shall let this be a reminder that “positive thinking” and effort are pretty useless without actual, tangible resources, and anyone who thinks that people who are stuck in a migraine hole simply aren’t trying hard enough should take a look at the facts.
As I celebrate this landmark, I pledge to focus any political energy I might have left over from pain management to trumpet the importance of more accessible, affordable, comprehensive, and compassionate care for people with chronic pain. I hope you will join me.
In other news, with the help of a newly acquired friend-with-migraine, I will be starting up an offical peer-support group called Migraine Toronto. Stay tuned.