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Archive for the ‘Faith and Fibro’ Category

I’ve preached it well.

There is beauty in the broken. And I kneel and motion with my hands as I recite the passage where the woman breaks her jar of nard and pours it over Jesus’ feet. And I mime the story of the cracked water jar that watered a pathway of flowers. And I take the hammer and the people flinch as it loudly crashes into the large terra cotta pot. And I hold up the tea bowl and I speak of Okakura Kakuzō and tea and beauty and the profound art of kintsukuroi. And all this time I weave in my own story of brokenness and the pathways and connections and beauty that God had hitherto brought forth from it…

And I believe it.
I do.

I believe there is beauty in the broken. I believe that God can use cracked pots. I believe that God can reform and repair and use our brokenness—no matter the cause of that brokenness—and bring beauty and encourage others and use it to ultimately draw all of us back to Him.

I believe it.
I find it beautiful.
I see the grace.
It encourages me.

But…

(You knew there was a “but” coming, didn’t you?)

So here’s the thing… I have this bad habit of taking what is beautiful and grace and meant for freedom and using it to bind and shackle myself again. Or I try to control it.

(And I’m pretty sure those two are connected.)

I came to the realization last April that I wanted to control my brokenness. I wanted to choose how my brokenness worked and looked to others. To be able to control what cracks and chips remain open as outlets of God’s grace and strength within, points where they can seep out and water and encourage others. To be able to choose which breaks get repaired in such a way that the scar is not noticeable. Even to have the say in what broken places are creatively and artistically repaired with golden lacquer kintsukuroi style so that others can see my beauty… er, uh, the hand of the One who did the beautiful work…

I hit that wall again last evening.

It was a dark weekend after a moody week in the midst of another round of difficult treatment after a rough (to put it mildly) year.

I’m tired and I’m worn.

“I suddenly had this realization: I actually don’t have any hope for healing,” I confided to a few friends. Not complete healing. Not on this side of heaven.

Oh, sure, I’m hoping for and doing what I can towards healing for the Lyme and for the Fibromyalgia and for the ear/dizzy issues (if they’re not related to one of those)… but I haven’t really thought towards or thought to hope for healing from allergies (respiratory or food) and sensitivities (scents, chemicals, other foods)…

And in my very-worn-down-ness and black-cloud-of-despairing, I realized that not only did I have no hope for those to change, but I don’t really want to have to live the rest of my life having to deal with them. I’m tired of it. I’m tired of there always being something.

One offered gentle counsel, trying to shift my eyes from myself to others who live real, full lives even with restrictions and limitations like allergies, diabetes, asthma and more, “it is possible to have a ‘normal life’ even with some difficulties.”

But inwardly I was like a toddler throwing a tantrum. Arms crossed. Pouting lips. Drowning out truthful voices with my loud complaints. Pushing away helpful hands that try to guide or comfort. Screaming my self-centered will: If I can’t have it the way I want it, what’s the point? 

Maybe it’s not so much that I want a “normal” life (even though that was the phrase I used initially), but I want an “ideal” life. My ideal. Life the way I picture it. With freedom and breathing room and not this minute-by-minute dealing with pain and fatigue and fog and dizziness and constantly needing to monitor my body, my energy, my time, my medicines, my environment.

And where there are challenges—seamless, effortless victory.
And where there is brokenness—beautiful, radiant healing.
And where there is tiredness—breathable, restorative rest.

And all of it immediate.
Or at least more immediate than taking weeks, months and years…

And preferably with an inspirational score in the background, with uplifting notes from percussion and brass and strings and reeds to keep me keeping on like a movie montage where all the tediousness of the trials is shortened into a few minutes of beautifully shot lighting and angles.

… So in this morning’s new light, with new mercies unfolding, I reflected back on my dark moods this weekend and remembered again that it is not up to me to control either my brokenness nor the when, how or way of my healing.

It is up to the Potter.

And Jesus asked of me this morning, “Do you trust Me? Will you trust Me? Will you relinquish control to Me? Will you allow Me to craft where the light and life seeps through and where the cracks are completely healed and where it is best to highlight what was broken? Do you trust Me?

And my response is both immediate and hesitant.
Full of faith and full of doubt.
Similar to the father in Mark 9, “I trust! Help my distrust!”
And the hymn-found words of Louisa M. R. Stead, “O for grace to trust him more!”

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Last evening I posted probably one of the most difficult posts I’ve ever written. It was a lament. Fairly raw. Honest. Not overly filtered.

The entire time there was a part of me that wanted to cheer it up with some white-washed scripture. Something positive and reassuring and… ultimately, in the circumstances, pithy.

But I couldn’t.

And not because I was trying to hold on to good theology.

It was, rather, because I was too worn. Too broken. Scriptural truths (in context or not) were simply slipping like water from my grasp.

And yet, as we almost always find with laments in the Bible, I could not close without a reaffirmation of trust and truths that are so engrained within me that their presence is known even when all else falls apart.

Those four sentences were a struggle.

And yet they were just as raw and honest as the rest.

So I hit the publish button and I brushed my teeth and turned down my bed. And before I put my computer to sleep I opened up iTunes to my morning exercise playlist. And when I got my pjs out to put on, I placed my exercise clothes on the bookcase.

Just like every night.

I also had my tea pot warmer and cup ready on my desk along with the BIC lighter that I use to light my candles when I get up on time to write in the mornings.

And then I realized what I was doing.

I said it aloud. To myself. To God. I didn’t believe the morning would bring the ability to move about and stretch and exercise and I didn’t believe I’d be able to get up and around early enough to have some book time. There was no hope for a better morning.

But I still prepared for it.

Because it is habit to do those things.

And that’s when a new thought struck me: Maybe hope is a habit.

And I crawled into bed, with heat on my pressure-filled, aching ears. And I carefully placed my head on the pillow so as to not incite dizziness. And my weary body sunk into the warmth and comfort of my bed.

And I struggled to focus on my memorized evening daily office prayers.

And that’s when God’s Spirit  offered flashback images, reminders and new thoughts.

Because yesterday I just wanted to stay in bed and sleep off symptoms and cry. All day. But I went to work. (Well, Dad drove me.) And though I may not have gotten much actual work done (for more reasons than just my health – it was an unusually busy-with-people day), I was there.

And when I came home I crashed for a 2 hour nap, waking at 5 to my parents wondering what was going on for dinner. They could see I was not in a good place. They even offered to take me out to one of my favorite places. Mom asked me what I wanted to do. What I felt like doing for dinner.

“I feel like eating ice cream and going to bed,” was my honest response from my ever-sore throat and ever-weary body. “But instead I’m going to help you (help me) make dinner as best I can. And I’m going to enjoy the strawberry-chicken-spinach salad more once it’s in my mouth than I can currently imagine I will. And then I’m going to enjoy a half cup of strawberry ice cream. And then I’m going to make that Norwex call. And get that e-vite for another hostess out. And maybe write a blog post. And then I’m going to bed.”

And that’s exactly what I did.

Right down to enjoying the brilliantly combined flavors of the strawberry-chicken-spinach salad once they were in my mouth.

And so as I was in bed a few hours later, I was reminded of these things.

That perhaps I still have hope even when I don’t feel hopeful.

That perhaps God is still building character in me even when I feel I am lacking, slipping.

That perhaps I am still persevering even when I feel lethargic, apathetic and threadbare and like I’m slo-mo falling backwards rather than pressing forwards.

And maybe this is what it means to be held.

To be sustained by God.

To be formed by His Spirit.

To let go of my ideals, my pride and my striving.

Maybe this is what C.S. Lewis was referring to in The Screwtape Letters when he mentions obedience in the face of nothingness-of-desire.

“Our cause is never more in danger than when a human, no longer desiring, but still intending, to do our Enemy’s will, looks round upon a universe from which every trace of Him seems to have vanished, and asks why he has been forsaken, and still obeys.”

I had always pictured living out that philosophy—that encouragement—victoriously. Defiantly.

A strong warrior’s cry deep within. I will do what is right! I will do what is asked! I will not let the enemy win! I will battle on! I will persevere! 

Like a movie montage highlighting the strenuous striving, sweaty effort and dogged determination of a warrior or fighter or athlete or overcomer, set in snippets and run together in moments what in reality takes months or years, all set to inspiring music like Eye of the Tiger or Chariots of Fire.

But maybe it’s not always like that.

Maybe it’s most often not like that.

There was no defiant cry last night. No striving. No battle cry.

Just a weary resignation to do what I had no desire to do.

And so I think of Bonhoeffer’s words and I wonder if I am “like a beaten army, fleeing in disorder from victory already achieved.”

When I set to choreograph that poem as a mime piece, one of the first and easiest parts, and the image that sticks with me the most even now, was that line.

Fleeing in disorder. 

I slow-mo’ed into a running statue.

From victory already achieved. 

With each beat I transformed the running statue into a cross.

The cross is the victory achieved.

God’s incarnation. God’s sacrifice. God’s work.

Not ours.

Not mine.

Maybe there are no movie montages for me.

Maybe there are no valiant battle cries or enemy-defiant shouts.

Maybe there is no earthly healing.

Maybe there is little to no seeing on my part of perseverance, of character, of hope.

Maybe there is only Jesus.

And maybe that’s okay.

Maybe then, in my failures and in my frailty… in my weariness and in my weakness… in my apathy and in my honesty… in my shameful brokenness… maybe then Jesus shines through.

Maybe then others can see what God is doing in and for me.

Because I am often blind to it.

And maybe that’s okay.

And maybe that’s what it means to be held.

And maybe hope is a habit not of my doing, but worked and sustained by the one in Whom I abide and Who abides in me, keeping me connected by grace to the vine that sustains and causes me to bear fruit.

Even when I can neither see nor feel it.

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I am worn.

There’s that Bible verse. The one about endurance. The one that lists all the good things that suffering produces.

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.

I’m having trouble believing it.

I echo the father in Mark 9, trying to put on the appropriate faith—”I believe!”— but then honestly crying out, “help my disbelief!”

Because from where I stand or, rather, sit dizzily and wearily, there is no perseverance.

I’m ready to throw in the towel.

My resolve is weakening.

My endurance is nonexistent.

I noticed in my symptom journal that out of the 207 days so far this year, only 15 were not noted as experiencing these ear and throat issues. I didn’t even bother looking at the fatigue and dizzy stats…

I no longer have good days. Sometimes I have a good half-a-day. Or a good string of hours.

But no good days.

And certainly no good weeks.

The longer this goes. The day in and day out of illness. The pain. The fog. The fatigue. The constant sore throat. The incessant aching pressure in my ears. The near-continuous state of dizzy. The unrelenting symptoms. The unanswered questions. The dashed hopes of thinking we have it figured out and a way to help heal or treat but it never working out. The frustration of doctors who won’t or can’t help. The pulling back in all areas of life. The isolation.

It’s getting harder and harder to hang on to hope for anything to change… for anything to do anything other than slowly, continually get worse.

I feel I have less character now. If the symptoms themselves don’t give me blinders, making it hard to see anything beyond their screaming for constant attention, then the depression that comes along with the constancy of such symptoms surely does. I do less for others. I put myself first more often. I give in more easily to sour attitudes, to grumpiness, to moodiness, to anger and frustration, to inaction… (and let’s not even mention how much church I’ve missed and how far behind I am in my daily audio Bible).

And I’m losing both the energy and the resolve to fight it.

I am not persevering. I am not persisting. I am not continuing steadfastly.

I’m at a standstill. Crumpled in exhaustion while the world goes on.

Maybe I’m just filled with the cynicism of Dilbert.

But I’m having a hard time believing that scripture verse out of Romans.

Because I don’t feel that anything of value is building in me through all of this. No perseverance. No character. No hope.

I simply feel worn.

Like an over-used shirt or a child’s poorly cared-for teddy bear. Days and years of use, of dragging, of friction have thinned the fabric, frayed the edges, worn some spots clear through.

I am threadbare.

And maybe, despite the fact that the verse keeps coming to mind, maybe I’m reading it wrong. Maybe it wasn’t meant to apply to my type of situation. I don’t know.

I’m frankly too tired to find out.

I just know that I’m not seeing it happen that way.

I am wearing. Not building.

I go back and read the verse.

Read that section.

Part of my brain acknowledges the truth in it.

That there is beauty there.

But it is fleeting.

And I look around about me. And I try to think if anything is still solid. Still steadfast. Still resolved.

And there is this:

God is real. God is good. There is grace. Heaven holds healing for me even if earth does not.

You will never convince me to disbelieve those things.

But right now? Right now I’m done.

I’m ready for Jesus to return or call me home.

I am worn.

I am threadbare.

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My mind is a very active place.

There is almost always conversation going on there.
With myself and/or with God.

So it was that yesterday afternoon while I was busy unloading from my work day and errands—putting groceries here, emptying my lunchbox there, taking my needed-for-the-chilly-morning scarf back to my bedroom—I was thinking about the new tonic my parents retrieved for me from my D.O.’s office that afternoon while I handled the other errands.

And I was hopeful.

I often am in such cases.

After all, it was my doctor who inquired about unmentioned symptoms as I was relating to her what was most bothersome at the time of my last visit. I had been flabbergasted at her pinpoint accuracy. And I was excited as she mentioned this new supplement of sorts that would not interfere with my current protocols. And I became even more excited as she described how the symptoms and body functions were all so interconnected and how this new tonic could promote healing.

But I didn’t leave with a bottle of it that day.
Instead I left with reading and research to review.

She also knows me well enough to know that I like to look into thing before jumping in.
(Well, for the most part…)

But the problem was that the paperwork ended up on that pile where everything important goes even though I’m too overwhelmed by putting out other fires to actually get to the important, if not urgent things…

Dr. Rahn and Covey tried to warn me about that…

Still, a month later those “also” symptoms had increased and I was becoming more and more convinced of my doctor’s connections and after being very knocked-off-my-feet sick for near a week and a half, in my increasing desperation, I grabbed the paperwork and a few minutes to read through it.

Then I called my doctor’s office. Do I get it through you or where? When are you open?

The next day my parents made the next-town-over run while I picked up a different prescription and our groceries for the week.

I got home just in time for dinner which meant just in time for my first dose.

And as I was here and there handling those just-got-home tasks, I was hopeful.

I was imagining the healing that could come as this little tonic works to fix something deep within my body that would allow my body to function and heal as God designed it to do.

I was thinking of better days.
Relief from a myriad of symptoms.

And then I was thinking about brokenness.
And this ongoing conversation between me, myself and God regarding my frail body, brokenness and healing.

Brokenness can be good.
Necessary.
Beautiful.
A way in which God works wonders… for my benefit or to benefit others. Often both.

“I’m okay being broken,” the voice in my head declared.

I mean, what if this stuff doesn’t work?
But I still want it to…

“I’m okay being broken… But I’d like it to at least be manageable.”

 

Before the words had finished echoing through the chambers of my mind, I laughed out loud.

For I suddenly saw the absurdity.

“I’m okay being broken for you, God, so long as I can control how my brokenness looks and affects me.”

“I’ll surrender to you, God, so long as I can still have my way.”

That’s not how this works.

And again I am confronted by my own need to control.
To hold on tightly…
… even to what was never really meant to be mine.

And again I hear God’s whisper, “Let it go.”

Let it go.

Can I surrender my brokenness?
Can I trust the Faithful One even when I am at a loss, falling apart, and not anywhere near what I had wanted?

I still want the tonic to work, of course.

But even more so, I want to continue seeing and hearing these revelations as God works through some deep places in my life and continue responding and letting go and trusting Him.

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Just because a gift is not exactly what you want doesn’t mean it is not a gift and not worthy of gratitude.

For example, I would much prefer complete healing. For my symptoms to be non-existent. Or even for them to be negligible, where they may still be present, but only in the periphery, not intruding or requiring constant care and maintenance.

Today, however, my symptoms are manageable. With medications and limitations, thought and wisdom and care required. I do not feel as well as I would like, but I am quite functional and today can be a good day.

And this is a gift, too. It truly is. And I can (and will choose to) be grateful.

And not with some sighing resigned “I’ll take what I can get” attitude. I don’t want to see this gift as anything less than what it is. Without caveat or addendum or excuses.

I want to walk this day as it is. To breathe it in and walk in grace, acknowledging and experiencing the presence of the One who walks with me – no matter what kind of day it is.

And that is the choice I am making here and now this morning.

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It’s amazing, really.
Then again, grace is…

Were you to ask me how I’m feeling on a scale of 1-10, I’d probably say a 6. I’m still a bit feverish, my throat still hurts, the headache is dull and hovering, neither my energy nor mental capacity is at full bars and I’m dealing with dizzy levels 2 & 3 in frequent (though not constant) bouts. So I feel I’m at the upper end of “surviving.”

And yet I feel worlds better than yesterday. The vastness of the difference rather makes me want to get up and do flips or dance around… except I can’t because I’m too dizzy and don’t have the energy. Still, the difference in astounding.

But regardless of how I feel, the fact remains that I am sustained. And that’s grace.

I clearly remember thinking last evening as I turned the dial on my antique desk calendar – after an unusually rough day of exhaustion and tears, one of those days where you can’t remember any good days before it or see the possibility of any good days yet to come – even in that moment at close of day as my fingers held the cool metal knob and my mind struggled still and again to focus on Jesus, I knew without a doubt that He was present… sustaining… enough.

Even though the day seemed more loss than victory… through the struggle and the grief and the runaway emotions and the spinning… and at day’s end even though I felt hedged in, pressed hard, perplexed, unable to find a way out, pursued (by fears and anxieties) and struck down, I was still breathing and Jesus was still there. I was not irreparably crushed, I was not completely despairing, I was not abandoned and I was not destroyed.

It was not the joyful, victorious living that I too-often prefer and picture in my head, full of pushing through and Eye-Of-The-Tiger accomplishments… but I was sustained.

And that’s grace.

Jesus is enough.
And because I know that Jesus was enough on a day like that,
I know Jesus is enough on any day.

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The voice on the other end of the line is cheerful, “Your blood work came back and everything is normal!”

She is dispensing good news. Yet tears well up within my eyes.

What should be a relief – what used to be a relief – is now a dreaded and haunting statement. Years of tests and “normal” results while being ill and getting sicker have hardened me.

If everything is so good, why am I so sick?
It’s a question I’ve asked countless times.

I think how it would be nice for once to have sometime show up as wrong and be fixable…

Caedmon’s Call is playing in the background, “And I’ll walk with grace my feet and faith my eyes.”

So… onward I go.

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