Sunday, December 8, 2013

The best laid plans of mice, men and migraineurs

It's in the lap of the migraine furies and they haven't stood up yet!

So grateful just for today to practice a 12-step program in all my affairs, including my affair with chronic migraine and severe fragrance sensitivity (osmophobia).  The program helps me to accept the encroachment of chronic migraine on my life as it once was, continue doing my footwork toward health and recovery while freeing myself from resentment against the fortune that brought this illness to me now.

The 12-step program of recovery is replete with slogans to transmit spiritual information. The slogan tool is well adapted for we migraineurs who may find ourselves operating with diminished cognitive powers at any time due to neurological symptoms or from the side effects of migraine medications. All that's needed is to remember a few words, in order, like a mantra.

A most useful 12 step mantra is "One Day at a Time (ODAT)" or the variation, "Just For Today". Last night I used ODAT to invoke an attitude to avert toxic resentment toward a genetic neurological disease, over which my powers are few. Resentment of reality inevitably leads to spiritually bankrupcy, (as we learned on the bus). This morning I experience acceptance and equanimity along with the pain. I harbor no regret, blame or resentment but just a tad of melancholy.

I had formed a small  hope, tempered by my one-day-at-a-time attitude, that last night I would be able to attend the annual  Rex Foundation benefit at the Fillmore West. You see that for me, a Dyed in the wool dead head, semi-retired flower child native of San Francisco, the Rex Benefit is a dream come true. It's a opportunity to be seated comfortably, by ushers, cafe-style, beneath elegant crystal chandeliers in an historic venue with perfect sound and an uninterrupted view of the stage. No crowding or fighting for a spot but in company of several thousand of my closest friends, listening and dancing to my favorite music and all for a good cause! A literal hippy heaven!

Despite doing the self-care footwork all day I was forced to accept that I could not attend last nights benefit, Nightfall of Diamonds, because my migraine levels were too high.  I'd even skipped my a.m. yoga class in an attempt to save enough spoons to make it to the show. Recently my health has been much bolstered by daily (whenever possible) yoga practice as a preventive for migraine and tension headaches, but a 60 or 90 minute yoga class does use a lot of spoons, so I skipped it, rested, and ate well.

Despite my efforts, at about the time Rex Foundation volunteers began serving the wonderful pre-show party food at the Fillmore, I was surrendering to the fact that there was no way I could venture into the City, into a crowd, and tolerate, much less enjoy, all the sensory delights I would encounter there.

Now, on the morning after, I feel somewhat disappointed and curious about the music I missed, I am also grateful for the spiritual fortitude I gain from living in my unpredictable world of "one day at a time" (and sometimes "one minute at a time").

Any plans I make are subject to change with a moment's notice. In reality, everyone's plans are uncertain - are they not? After all, God laughs when humans plan.

Plans are extremely uncertain for the chronic migraineur and especially for the migraineur who is highly sensitive to fragrance. Plans are uncertain because access depends heavily on the behaviors of other people. Though I may feel healthy at a given time, my participation in an event can be completely blocked by someone else's decision to use or apply fragrance (parfum) or fragrance-containing products on their hair, skin or clothing. One spritz of perfume or hair spray requires little time and no thought, yet can render an event or location completely inaccessible me and others like me, can cause multiple days' illness. For a canary, it's pretty risky to make plans involving people.

The Fillmore is a pretty good venue for me because the ventilation system is excellent (although it can get a bit chilly directly under the vents).  Also, those of my culture and generation tend to avoid smells from laboratories (it's not the smell-it's the chemicals) but last night I didn't even get a chance to risk exposure to perfumes at what would have been the only late night musical event for me since last December. My migraine brain just wouldn't allow it.

The process of acceptance of that fact was a bit challenging spiritually, I fought reality for a while, but in the end "acceptance is the answer to all my problems today" (the Big Book of Alcoholics Anonymous).  Just for today I chose to take care of myself first and to accept the path laid out for me, one day at a time.

What seems like misfortune subjectively, is objectively speaking, just fortune a fact, ineffable though it may be to me. Fighting facts using magical wishful thinking poisons me on the inside, much worse than the perfume poisons me from the outside.

"C'est la vie" say the old folks, the migraineurs, the spoonies and those with disabilities and lacking access. You never can tell.  One day at a time.



  1. Hi Suki great article and so true! 60 to 90 minutes of yoga is an amazing feat well done and congratulations I can't imagine how much that exercise would help! The phrases you use for self confidence are great I may even steal some for myself!

    1. Thank you for being the source of my first blog comment ever! The phrases are for everyone, everywhere courtesy of a bunch of alcoholics......