Wednesday, January 26, 2011

A Momentary Rebellion

or I Would Like a Macrocosm, Please.

Even just for a while.

A few years ago I read a book by Patricia Loring on prayer in the manner of Friends (Quakers), called Listening Spirituality (Volume I).  Friends seek to "center down" into a listening quiet; the idea of prayer is always more to listen to God than to talk.  In any time of silence, though, distractions arise—thoughts that bubble up and start chattering.  Loring suggests regarding these thoughts as ideas that are clamoring for blessing.*

So when the word "stultify" bubbled up from nowhere on me today, no one was more surprised than I (has anyone ever used the word "stultify"?), but I decided to pay it some attention.  I associated it vaguely with the idea of a skill or personal quality withering from disuse, a kind of atrophy of the self, but thought I'd look it up to be sure.  From various dictionaries, these definitions emerged:
  • To cause to lose enthusiasm and initiative, especially as a result of a tedious or restrictive routine
  • To make useless, futile, or ineffectual, especially by routine
  • To render absurdly or wholly futile or ineffectual, especially by degrading or humiliating means
Synonyms: cripple, impede, frustrate, hinder, thwart.

It seems like an odd word to have come clamoring for a blessing.  But it knocked on the door asking for something.

Probably for my honesty. This has been one of those weeks when I've looked up and seen a wider world, the world I used to be part of.  It started off with a sunset and two vivid pink contrails jetting off invitingly into the Western sky, and continued with encounters with the world of ideas—with people engaged with their work and growing in it—that left me just as far behind. When I stop and let it, the loss just bites. 

I don't generally believe in stopping and letting loss bite.  I don't see the point in complaining or in harping on symptoms—I just don't think it helps, and it often makes things worse, besides making you forget that other people have their difficulties, too.  But not complaining can sometimes turn into denial or a kind of false front, and it can give others the impression that everything's fine—or worse, that CFS isn't that big a deal—when the opposite is true. 

So for today, I am aware of being stultified—and I'm passing that awareness on to you, you lucky people.  I am tired of a world of walls and restrictions, of being trapped by illness within narrow limits, of being daunted by stairs and parking lots, of having difficulty understanding non-fiction and being incapable of remembering it for more than a day, of having to control light and noise and stress and chemicals and food and thought and activity in order just to function.  After 15 years of this, I am aware of thoughts being shallower, of standards lower, of caring and accomplishing less, of slowly giving up bits and pieces of the fight.

I would like to go out for dinner, just once this year; to stay out after 7:00, to remember where the switch is for the headlights on my car; to go to a movie at the actual theater or a play or a concert or a lecture; to listen to music for more than five minutes before the noise gets too intense; to spend my birthday doing something other than lying on a sofa; to go for an easy walk in the bosque without spending the rest of the day in bed and taking a three-day weekend to recover; to travel in a plane and still be well enough to enjoy myself when I reach my destination.  I would like not to feel as if every cell of my body is lugging around 25 pounds of lead weights, to forget the meaning of the word malaise. 

And I am one of the lucky ones.  I'm still at about 60% of my former capacity—with that 60% I can go to my easy part-time job and maybe do one errand.**  Then I go home to rest. On weekends, even if I seldom feel able to leave the house, I can play a bit in the garden and do some cooking and cleaning.  Holidays are the break in the routine, the chance to "chase sunshine" and escape for a couple of hours, or at most two or three days.

I love my little garden.  I love it.  I am so grateful to you all for walking the circle path with me twice a week and letting me share its pleasures with you.  I keep thinking, "Surely they're all getting tired of hearing about 'Wild Thing' autumn sage yet again."  But this little garden is all I have.  It's all I have to offer.  It would just be nice if there were more. 

There.  I am done complaining.  Tomorrow I will remember gratitude and regain some contentment, because I do, after all, have a roof over my head, plenty of food on the table, and a loving family within calling distance.  The rest, I'm convinced, is (more or less) a matter of perspective.  And besides, the Lady Jane tulips—early-blooming wildflower tulips—are up.  They won't bloom until March, but the leaves are showing.

There's light at the end of this (very small) tunnel.

* It also sticks in my mind that she credited this idea to Hasidic Jewish teaching, but I can't recall for sure.
** Just as an exercise in CFS awareness, assuming that the waking day is 16 hours, and 60% of that is about 9.5 hours, if you had to throw away the remaining 6.5 hours of every day, which would you choose?  Now imagine if you were functioning at 25% of normal, like many people with CFS...  Keep in mind that you won't feel well for any of those hours.


  1. Here's to hoping you *do* get to do some of those things this year! I enjoy your garden, your photos, your writing, your thoughts - thank you for sharing these with us, while you are unable to pursue other activities.

  2. Stacy - Excellent post and I now have a new word. Love that! I have words pop into my head and I have to look them up as well because I have no idea what they mean. I suppose I learned them when I was well and there are there somewhere ready to spring forward at just the right time! :-)

    I loved you description of ME/CFS. Concise and totally accurate.

    I am one of those now living at 20-40% after being accidentally poisoned and I can tell you it is a challenge. But like you, I think we have to make the best of where we are, enjoy that which we can, and stay as positive as we can.

    I also agree that we need to be honest in our descriptions of the devastating effects this illness has on us but without becoming bitter, withdrawn, or lost in ourselves.

    Thank you for writing this. I really enjoyed reading it and learning a new word!

  3. Zoe, thank you. One of my goals in starting the blog was to find a community of like-minded people - I'm so glad our virtual paths have crossed!

    Dominique, I always love finding and playing with words, too. :)

    You were one of the people I was thinking of who had been hit hardest - along with the others in my "Troupers" list. To be largely homebound and keep any kind of perspective is a challenge I can barely imagine. You really are a Trouper!

    I also think occasional meltdowns are useful, though I generally try not to make mine quite so public... But sometimes they show you a gap that you can fill or a new direction to move in. And, like you, I think it's helpful in the case of ME/CFS and other "invisible" illnesses to show people what happens behind the scenes.

    I really appreciate your comments today, Dominique - thank you!

  4. Stacy,
    I really enjoyed this post. I am not sure I'd ever heard the word, but it was fun to walk through its meanings with you.

    I have fibro and chronic fatigue too. I loved the way you described the way of life for us. I have been having negative thoughts too as of late and it helps to know others feel this way too.

    I love your garden. It's beautiful.

    Thanks for sharing your words and your life.


  5. The meltdown, as you call it, is a slice of you. A shadow that shows the grace and charm of a garden in which you know and love each plant. As our choir mistress taught us, the rests in the music are important, part of the pattern, like the holes in lace.
    I still treasure most in blogs that - let ME spend a few minutes in YOUR life experience.

  6. Elaine, welcome! Thank you for reading and for commenting - and for joining me in a moment of fellow-feeling. I appreciate hearing your thoughts. I look forward to getting acquainted with you through your own lovely new blog as well.

    Diana, what gracious, beautiful words. Thank you for offering that perspective - I like that, thinking of the "other" times as the rests. Thank you.

  7. Good to name it and claim it-get it all out some times. :) I love to come visit your blog and get a glimpse of your gardening world when I can. Keep it up-your little world and writing are beautiful.

  8. Thanks, Jan Lyn - I think this was just the usual January melt-down. It seems to be over now. :)

  9. I think the occasional meltdown can be cleansing. Although yours are much more polite than mine :0)

    "Stultify" is a perfect word for what CFIDS/fibromyalgia can do to us. Although, with my brain fog, I have to make an effort not to confuse it with "Stupefy", which is a spell most commonly used by Harry Potter :D

  10. klbrowser - I can usually count on melting down about twice a year, winter and summer, but I'm kind of bummed that the melt-down is so well-behaved... :)

    "Stupefy" is a perfectly good spell when used on others... But for ourselves, I'd like a rousing chorus of "Protego!" now and then!