Tuesday, August 31, 2010

More from the archives: talking too much; rumpelstiltskin.

Interesting to come across this again. So much still rings so true, and sorting it out continues to be a struggle...
At times, one of the most difficult things about living with a poorly understood illness like fibromyalgia (FM) is figuring out how to be sick in a healthy world. In her book You Are Not Your Illness, Linda Noble Topf explains how illness has a way of exaggerating our sense of "being different from others, of being special or unworthy, and of ultimately being separate and alone." Nevertheless, the experience of feeling connected to others is vital to both our physical and mental well-being. 
The sense of isolation people with FM may feel is exacerbated by the fact that our illness is invisible. As FM sufferers, most of us have probably heard the phrase, "But you don't look sick!" more times than we can count. Even when intended as a compliment, this simple statement can touch off a cascade of emotions: anger, confusion, shame, and self-doubt. It seems that no matter how long we've lived with FM, innocent comments like this from friends and strangers alike have the potential to touch a wound that at times feels surprisingly raw. 

Often the question people with FM most dread hearing from a friend or acquaintance is "How are you?" This seemingly innocuous ritual of polite conversation can be fraught with complexity and emotion for FM sufferers. We may long for the days when we could reply, "Fine thanks," without a second thought; but when overwhelming pain, fatigue, or other symptoms render us vulnerable and disheartened, this simple response may feel like a lie.
We might find ourselves trying to justify our activity restrictions or insisting on the severity of our symptoms—after which we may feel guilt or anxiety about being seen as "complainers." Desperately wishing we weren't sick, yet wanting clear signs of illness to validate our experience, we're left with a sense of confusion and self-doubt. It can be difficult to know how to act because we're caught between contradictory wishes: wanting to appear normal and wanting to be understood.
Many of us have always prided ourselves on being self-sufficient achievers. With the onset of FM, we may have to rely on others in new ways; it can be difficult to acknowledge these needs to ourselves, let alone communicate them to others. We may feel deficient, embarrassed, or frightened; perhaps we're afraid others will be resentful of our neediness or that they cannot understand.
I'm not adjusting to my "new normal" with much grace and aplomb.  I fight--mean and nasty, yet knowing that, ultimately, I'm the one who will lose. I don't want to talk about it, but I want you to understand.  And the friction from that Catch-22 is a constant source of irritation.

Yet, still I rise. If all those who have ever accused me of being whiny, miserable, or negative knew how much optimism is required for me to get out of bed every day, maybe they'd be the ones shutting up.

(Originally posted on myspace Tuesday, May 01, 2007)
talking too much.
Current mood:  tired
Category: Life

"You looking good," said Sethe.
"Devil's confusion. He lets me look good  long as I feel bad," said Paul D.

---From Beloved by Toni Morrison

Fibromyalgia & Friendship by Lisa Lorden Myers

This article talks a little about the difficulties of dealing with invisible illnesses and other people. I've been talking about what it's like to live in my body lately because of getting the diagnosis, reading more, trying to figure out what this thing is, what it is tied to (apparently everything) and trying to make sense of my experience. Not to mention the fact that I've been in a lot of pain.

I've suffered a long time, with no explanation. After 25 years, someone named my torment. No, I haven't talked about it much--what was the point? I just look like a cranky whiner anyway. I'm "negative," "irritable," "flaky," whatever the adjective du jour is...

So, I'll shut up again in short order, because people don't want to be bombarded with "bad news," even if that is the daily paper of your life.

(Originally posted on myspace on Thursday, April 19, 2007)
Current mood:  tired
Category: Life

Like the queen seeking to save her young child, I have scoured the countryside trying to find the name of my tormentor. One week ago a man gave name to the pain I have lived with for over 25 years. Unlike the queen, I was not delighted to discover the appellation of that which has eluded me for so long. A first, I found myself descending into despair, as though I was being sucked through a whirlpool. I told myself that this feeling made no sense—this name changes nothing—if anything, it offers hope.

I shake, but the tendrils of despair cling to me.

I cannot accurately describe my emotional state—nothing quite hits it spot on. I want to know everything. I feel stuck in the fog of war. I feel wounded in a different way than I have all of these years. I feel vindicated, but with no sense of victory. I feel weary, and as though I am at the base of a mountain that must be scaled. I feel at once alone and as though I want no company.

I keep telling myself that in a name there is hope, but I have yet to feel that hope in my soul.

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Why is this place called Rough Branch?

Rough Branch is a reference to Wendell Berry's "mad farmer" poems. Berry is an agrarian populist poet, and advocate for sustainable agricultural practices. I don't agree with every position he takes, but his reverence for the beauty and balance of the natural world, for the preciousness of the life that runs through it (including our own), and of the community that sustains both the land and each other, speaks to my heart.

Over the past few years, I have sunk myself into the soil in my back yard, and into the community of neighbors that surrounds it, and it has begun to restore me. My garden is not just a plot of dirt providing vegetables for the salad bowl, it is an act of love, a place of profundity and awe. If you knew about the ecosystem that lives in but one gram of good earth, you would be humbled, literally, to the ground.

Berry's poems are passionate calls to live--deeply, profoundly, fearlessly. To step out of narrow-minded egotism, to secede "[f]rom the union of self-gratification and self-annihilation, [to] secede into care for one another, and for the good gifts of Heaven and Earth."

And so I have made my own nation small enough to walk across. I have named the small corner of the earth I steward Rough Branch. I have declared myself free of ignorant love, and I secede...

From the union of power and money,
from the union of power and secrecy,
from the union of government and art,
from the union of science and money,
from the union of ambition and ignorance,
from the union of genius and war,
from the union of outer space and inner vacuity,
the Mad Farmer walks quietly away.

There is only one of him, but he goes.
He returns to the small country he calls home,
his own nation small enough to walk across.
(From "The Mad Farmer, Flying the Flag of Rough Branch, Secedes from the Union")
The Mad Farmer challenges us to reconnect, to resurrect our land, our communities, and our souls.
So, friends, every day do something
that won't compute. Love the Lord.
Love the world. Work for nothing.
Take all that you have and be poor.
Love someone who does not deserve it.

Denounce the government and embrace
the flag. Hope to live in that free
republic for which it stands.
Give your approval to all you cannot
understand. Praise ignorance, for what man
has not encountered he has not destroyed.

Ask the questions that have no answers.
Invest in the millennium. Plant sequoias.
Say that your main crop is the forest
that you did not plant,
that you will not live to harvest.

Say that the leaves are harvested
when they have rotted into the mold.
Call that profit. Prophesy such returns.
Put your faith in the two inches of humus
that will build under the trees
every thousand years.

Listen to carrion -- put your ear
close, and hear the faint chattering
of the songs that are to come.
Expect the end of the world. Laugh.
Laughter is immeasurable. Be joyful
though you have considered all the facts.
(From "Manifesto: The Mad Farmer Liberation Front")
All quotes from Wendell Berry.