My friend Claudia Mair Burney and I have a couple things in common. We are both religious misfits. We are both writers. We are both mothers. And we are both chronic pain survivors.

Awhile back, when I was in a period of struggling with pain and the way it limited my work, Claudia sent me a list of things she’d done while laid up with pain. She called her list “Things I’ve Done From Bed.” She wrote novels. She raised children. She saved a marriage.

It helped. Seeing her list rolling out long in that email. It helped.

Because of this pain, I work in a unique way. I work small. I work in tiny steps and short spurts. I have to be very realistic about my situation and work within that reality. Just dreaming big is not enough. I have to work too, in this really uncommon manner. I may not get as much done as others I admire. But I do the work of my hands, every day. Every. Day.

I thought I was getting better, moving out of the pain, but lately I think maybe not so much. And sometimes, this just really breaks me down. I look at my life stretching long in front of me and think, “Really, another 40 years of this pain?” Then I look at my children and think, “Yes, of course. As many years as I can get.”

So I’m making my list now, in the little window of hopefulness  that I have today, in case the shades snap down again. So I can remember what I can still do. So I can recall that small is beautiful — even if you have to do most of it from bed.

1. Became famous among dozens for helping “recovering evangelicals.”
2. Wrote  several hundred posts on postmodernism as the Urban Abbess.
3. Wrote 453 posts on “soulcare for flibbertigibbets” as Magpie Girl. Read the rest of this entry »

Woke up again with migraine pain. Day 6..7…I’ve lost track.

I called a friend yesterday for advice on a stuck place in my work. Was told that I am letting what I *perceive* as limitations stop me.

I don’t think this pain is a percieved limitations. It seems pretty damn real. It seems pretty damn limiting.

Apparently, some people can write books while paralyzed by just blinking one eye. Some people can write books while brain damaged. It’s amazing, isn’t it?

I don’t feel like I have the inner resources to be some people.

Still, I am trying to shift my perspective. Trying to think of how I can return to teaching — something I quit because I could no longer trust my body to be well enough to show up when I was scheduled. I’m trying to get around that limitation.

But mostly, I am angry. Angry at the illness. Angry that people can’t see how much it effects me. (I can count on on hand the number of people who truly “get” it. Lynette, you’re number one, love.)  Angry at how alone that makes me feel.

Angry that I don’t get more credit for all the herculean effort it takes to do the things I do in just one daywith pain: feed my children; endure the pain of the traffic noise as I walk them to school; exercise regardless of my condition; be emotionally present to my family, my readers, my friends. Not to mention all the extras it takes just to hold a body together when it is this frail: the length of time it takes to shower when you can’t move your limbs without pain; all the hours in the pool, on the yoga mat, at the doctors; the enormous expense of medications and supplements and alternative practitioners. Even my gym costs more than normal because I can’t stand the noise of the popular, cheap clubs. Does anyone see this? This doesn’t flow, it doesn’t come easy. It’s a hike through the desert, every single step of it.

Today’s Plan:Move on Anyway. In spite of. In the Face of Pain. I’m not well enough to bike to the club to swim, and I don’t have time to walk because of a doctors appointment. But i can do yoga at home. I’ll cook from scratch so  I can “eat clean.” Write and record the Do Less post for tomorrow. Find a new doctor (requires a bike or bus ride). Walk to pick up the kids from school for choir practice. Walk to choir practice. Walk home. Make dinner (in pain. I hate that part.)  If the pain in manageable go to my own choir practice (Tho this kind of singing in on my Mondo Beyondo list, I may have to quit this because I’m usually in too much pain by evening.) Mourn the fact that my brief dalliance with moderately pain free living has passed. I will do all of this — and more — in pain. Despite pain.

What I won’t do because of the pain:learn how to edit my podcasts, learn how to set up an ecourse registration page (can’t concentrate enough or read enough), have sex, truly enjoy anything I do (hurts to much), ride my beautiful bike instead of walking (everything takes so much longer on foot), laugh.

Wouldn’t you know it?  I’m gearing up to write a series of posts for the new Do Less Campaign, and my to-do list is suddenly stressing me out.

Universe, meet Sense of Humor.

Do Less kicks off tomorrow with Why I Keep A Have-Done List. But since it’s *8 Things Thursday, let’s do a little warm-up exercise.  It’s time to think about what you need to stay healthy and sane on a day-to-day basis. Here’s my basic set:

1. Sleep: I need 8 hours a night, and if my migraines are flaring I grab a nap at 3pm as well.

2. Exercise: A walk or swim and at least 10 minutes of yoga a day is helpful in keeping the migraines and bay.

3. Quiet: My brain hyper-processes all sensory intake, so background noise stresses me out. I work without music or talk radio in the office.

4. Meditative Activities: If I’m feeling stressed, a few rows of knitting or some time on the guitar always helps.

5. Work/Rest Rhythm: This book helped me figure out a good work/rest pattern.  If my migraines are bad I have to work one hour, rest one hour. One good days I can work 2-3, rest 1. It makes me feel lame, but I’m learning that it is what’s functional for me right now.

6. Morning Cuddle: this 15 minute check-in time with my girls is a must. (more here)

7. Grown Ups: I work alone and live in a culture where I don’t speak the language. At least one coffee or lunch with a friend each week is required to keep me sane.

8.  Meaningful Conversations:  “Only Connect” is a big theme for me. Talks with my Soulsisters and my teenage-darlings must regularly for my spirit to feel strong.

What *8 Things are your self-care essentials? Grab a button and play along, or leave your link for this week’s list is the comments below. Thanks for reading!

Hello All. I’m icing my head and listening to John Mayer’s Gravity, which is always a sign that I’m holding on to hope with both hands. It’s a real wrestling-the-angel moment over here folks, with no apparent end in sight. Why? Ten days of migraine, that’s why. Ten days of canceled dates, and parenting through pain, and (uh-hem) not a lot of shugar, if you know what I mean. (Just telling it like it is folks. Chronic pain SUCKS!)

Thankfully I get these little moments of relief where I can dash off a microblog or make notes for a longer piece or writing, or you know, take a shower or something dumb like that.

This is making me nuts because my deamon is downloading writing ideas to me on an every-five-minute basis. I am holding him by the tail and fretting a little. Leonie says, “Don’t worry Possum, they will be there when you need them. And I’m trying Leonie, I really am, just to trust in abundance and to not worry about lack.

In the meantime let me make a confession. I don’t really read blogs. Shocking, I know, and tragically unfair. I don’t really read much at all anymore because of my head, and the eye strain, and the ache. Which is completely awful because words are my absolutely favorite thing. I’m totally dependent on audible.com, which makes me worry that my intellect is slipping because it’s a bit of a dust-up trying to find audio books of quality. So far I’ve dredged up a few good ones and my brain feels pretty well fed. (Phew!) And thankfully some of you podcast and some of you vlog, and there’s always dear old TED and TAL to keep my brain engaged.

But my point is, if you blog, and you know I’ll love you (or that I already do) you really must Twitter or Facebook for me. If you tweet your new posts, or get them up on FB, I will read you. I have the most organized TweetDeck and FB lists in the world, and I follow my readers, soulsisters, and family(ish) folks faithfully. Your’s will be the blogs I manage to gaze at, and retweet, and love-link to. And that’s good for the giant pool of wisdom, right? So good for us all.

So please follow me, and I’ll follow you and together we’ll make it thru this crazy little journey called life.

All my Magpie love,

Rachelle

Now in love with these new-to-me writers thanks to Twitter!

Pen at The Penny Has Dropped (so pretty, so wise)
Emma Bradshaw (because i do love the eccentric britts)
Susannah at Ink on My Fingers (for bravery and beauty)
Megg at More to Me (we live in the same time zone, woot!)

my august dreamboard, now on display with a candle in the middle of the kitchen table.

I wish I could trust in healing. That it will come in this life time. That Josh’s deep conviction that I will be free from this pain will triumph over the calm quiet voice inside me telling me, “Girl, you’d better get used to managing this, because this is it forever.”

I wish I could trust my body. That when it wakes up in the morning, it will allow me to do the basics of my day. That it will not make me cancel, lie down, swallow pills.

I wish I could trust my doctors and practitioners – all 31 of them, each of them speaking with so much confidence on my first office visit these words: “I have such good results with migraines.” All of whom now know me only as a cold case, as a stack of files.

 I wish I could trust in Alanis’s soft sermon. That I would be good, even if I could do nothing. That I could be good, even if I got and stayed sick.

 I wish, I wish…

After five straight days of mild-to-killer migraines, I’ve decided it’s time to pack it in and spend the day on the couch. I’ve been trying to press through, in part because I had a deadline. But now that that’s done, it finally dawned on me that if I’d had a fever for five days I would have been down on the couch long ago, right? So why not try a little rest and re-coup with the migraines.

Most of you know that I am a chronic pain survivor. I have chronic, often daily migraines with a side of insomnia and a new and improved symptom of general muscle-and-joint pain which I’m combating hard right now so it doesn’t turn into fibromyalgia. I don’t write about it that often because there are such excellent sites out there for headache troubles, and because I’m working hard on not letting the pain become my primary identity.

I often forget that for ‘normal’ people, it’s really hard to see and to understand what everyday life is like for people with chronic pain. Because it’s not like a cold–it doesn’t go away with a jug of OJ and a few hours of daytime TV. To some extent I try to mask my pain, especially from my girls who are already expressing concern that they are “going to have headaches like Mommy” when they grow up. (Something I am terrified of, because it is genetic and lurks on both sides of our family tree.) But even though I’m pretty open about being sick, and I feel like I bitch and moan quite a bit, the reality of managing chronic pain must be fairly hidden because nobody really gets it. Not the community that met every week in my home, not my best friends, not my parents.

Once, when I had to go off all my meds for a while to reset my system, Paul and I drove out to my parents’ house and asked them to sit down in the parlor with us. We told them very seriously, in that “Grandpa’s been diagnosed with cancer” sort of way, that my migraines were really serious. We explained that I was going to have to go off all my meds, and that this would throw me into a severe pain cycle for about six weeks. We were letting them know, because we were going to need some back up. Could they help with the kids?

I must have looked pretty bad already, because I recall them looking at me in a very concerned way. It was clearly an ‘ah ha’ moment. By this point I’d been sick for years—at least 3 years if not longer. But it was clear that it had never sunk in how deeply impacting this conditions was. And these were my parents, who we are very close to, who see us all the time. But still, they hadn’t really twigged in. Thankfully, they totally rallied. My mom called during the week to check on me. They took the kids for the weekend. They helped fold the laundry. It wasn’t that they hadn’t been willing to help. They just hadn’t realized how serious the situation was. To me, it seemed blatantly obvious. I thought the whole world was saying, “Wow. Did you see that woman? She is clearly sick!” But it wasn’t working that way—my illness was more hidden than I realized. And all I needed to do to get help from my folks, was to tell them.

So maybe we chronic pain survivors should explain a little more. Maybe that truth-telling would make it a little easier on everyone.

Recently Sacred Suzie sent me an excellent article by Christine Miserandino called The Spoon Theory. It might help you, it might help me, and it might help someone you love. In the article Miserandino describes how after many years of living together and seeing the effects of lupus, her best friend reveals that she doesn’t really understand what it’s like for her to have chronic pain. Miserandino gives her friend a fistful of spoons, explaining that this is all the energy she has for the day. The friend laughs and wants more spoons. Nope, this is what you’ve got. Then the friend tries to say that she’ll use one spoon to get ready in the morning. Miserandino points out that no, that will take three spoons: one for the energy it takes just to get up with joint pain; one for the mental energy of assessing where your body is at today (can you manage buttons? Does a low grade fever require a sweater for the chills? Etc.); one for the act of taking a shower when everything hurts. (In my case it hurts my scalp to wash and comb my hair, it hurts to lift my arms over my head, etc.) Then there’s breakfast… You get the point. By the time the friend is ready for the day half her spoons are already gone. Do you get it? Does that help?

Today, I don’t have very many spoons. Today I have to spend a lot of time on the couch. But tomorrow may be better. Tomorrow is another day.

The Spoon Theory is a good metaphors for describing life with chronic pain. Maybe they will help you or someone you known. And maybe if you understand a little better, that disconnect over not understanding will end, freeing up some energy and preserving another spoon for something better. Here’s hoping you have enough spoons to slurp up life today! May Shalom greet you at every turn. Namaste.

Related Posts:

God, Migraines, and Stillettos
Leftovers: Lonliness
Pain: Collage
Small Things you Can Do When You’ve Been Sick a Long Time
*8 Things: Songs I Need to Breathe
It’s Like a Miracle
On Pain, Mourning, and Telling the Truth
How Pain Shapes an Artist
On Pain and Indentity

Gentle readers,

Here is the problem I am having. Whiplash. Schizophrenia. Wild facilitation of perceived reality.

Am I a lucky lady of leisure with time to write, and bake and make art? Or am I an isolated pampered middle class white woman with no purpose in life? Am I blessed with dear souls who love and appreciate me? Or am I alone in the middle of a city so teaming with people I can hardly bare the noise at the grocery store? Am I a productive writer with lots of material and a cache of faithful readers? Or am I an unfocused flake who can’t produce a piece of finished work? Am I a healthy, curvy hot mama who feels pretty damn good about herself at nearly 40? Or someone with a broken down body who’s in pain more often than not and who can’t figure out what to eat to save her soul?

I don’t know how to live in this facilitating world, in this inconsistency. Is stability possible? Preferable? Can one feel like a stable person for more than two hours at a time? Can one feel sturdy, reliable, consistent for a week? Is there some way not to feel like a crazy person over the span of 30 days? How, tell me how. I’d like to know.

This is my dreamboard for August as I pray/wish/hope for shalom in my physical self.

Last month’s dream of curtains and spotlights is still alive and kicking. I’m still playing guitar, and I’m working with a life coach to figure out what that mysterious phrase might mean for me.

For more information about dreamboarding click here. Good shabbat to you!

The cover from my current journal, made with a postcard of Picasso’s “The Old Guitarist”–my personal icon of mourning.

I am coming to the realization that I have two functional weeks a month. Otherwise the pain level is too severe. I can’t write well when I’m this foggy.

For awhile there, for a beautiful hopeful season, I was in better remission and I had most of the month free and clear. But now, it’s back to just two weeks. If it gets worse, if it gets to be more than this, I’ll have to fly home and see my super special Dr. Woo-Woo and get back on top of this. You all have to hold me accountable to this okay? If I’m out of it more than two weeks a month you have to say, “Rachelle, it’s worth the money. Fly home. Spend a week or two on Dr. Lewis’ treatment table.”

Chronic pain is such a complex creature. It is a large part of your life, but it is not your life. It is a big part of you, but it is not who you are. Living within those paradoxical realities is challenging, perhaps as challenging as figuring out the physical bits and pieces of it–the medicines and the food allergies and the exercise and sleep needs and all the more attainable nuts and bolt-ness of it all.

I’ve wanted to write something about this for while. Something like Nicholas Wolterstorff’s Lament of a Son which not a self-help book, but the author’s story about the death of his son. The telling itself though, is helpful. The telling itself is the companionship for the journey.

In the beautiful children’s book Frida, the author says “she turned her pain into something beautiful.” I’d like to do that. I’d like to tell true things – stories that are also helpful.

I don’t know why I always leap to the idea of a book, when clearly articles and essays are my most natural length. (I just get so distracted by sparkly things, and without a real deadline I skip from project to project. This is not a boon to my agent.) At any rate, maybe an article would be more reasonable here….maybe something for The Sun. I have a couple little bits that might turn into something. This one for instance, or this artsy bit here, or here. Or maybe these more practical stories. And then there is what I wrote this morning, based on an image that came to me while I was doing Shavasana on the living room floor:

I offer this pain to you on a gilt platter.
No, held aloft in a silver bowl.
I give it to you coiled, or swirling and boiling.
A dark depth. An oily surface.

I give it to you as an offering because it is a part of me.
Because some days, it is all of me.
I give it to you as a gift, you who the wise ones says want all of me. (Though perhaps they are not so wise.)
I give it to you as a gift to see what you will make of it.

Will you touch it with a long-nailed finger and turn its surface to silver? Sprinkle it with some earthy magic? Feed it drops of Lucy’s cordial? Will you blow on it and part the waters; wave a hand and vanish it all; speak and make it to run clear; drink it down within yourself?

What will you do then,
with this pain that drains from the trinity of my eyes and the bridge of my nose?
What will you make of this dark offering?

Play us out Sister Alanis.

Cate’s summer knees on brilliant display.

There is a part of me that misses preaching, and another slice of my persona that desprately wants to be this guy. So here’s a little bit of both captured in my very first podacst — it’s me reading my latest blog post. It mentions a couple of things you can link to like Tweet and this charming get away.

Listen to the podcast here:

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