New skin

When she was three, she sang her ABCs to me in a husky voice made for a 40-something burlesque singer. Years have passed now, and her body and brain still bear the scars of the ravaging of illness, and there are no ABC songs. We talk about this - talent and proclivities lost in the quicksand of a fight for a life - and we talk also about finding new strengths. Her name means hard working, and she shoulders tasks meant for children twice her age with remarkable aplomb and tenacity.

There is a curious sort of freedom in loosing oneself from expectations and floating free on a breeze of everything possible, finding fresh capacities and discovering new gifts.

I used to be a perfectionist, a gifted scholar, an organized housekeeper, a leader of small groups and Bible studies, a woman with an answer to every question. I was ravaged by a different firestorm - the invisible kind that attacks your mind, your faith, your confidence. I woke up from my dark night to a world full of strangers and - perhaps worse - enemies who wore the faces of friends. I gave in to tremors of anxiety and earthquakes of panic, paralyzing fear of whom I would meet out in public and drowning under an impenetrable sludge of suffocating depression.

Like dry brush in a hot summer wind, my expectations went up in smoke as I read about freedom in Christ:

For freedom Christ has set us free; stand firm therefore, and do not submit again to a yoke of slavery. You were running well. Who hindered you from obeying the truth? (Galatians 5:1 & 7a)

Old life, old ways, they go up in flames 30 feet high, a towering tornado of twisted expectations and torturous presumptions of who I was, who I am, who I will be.

A year ago, I wasn't to be trusted in public, a crumbling edifice of what used to be with a hollow core not yet built into the person I was meant to be all along. Fragile as chipped china, I tiptoed around town, avoiding familiar places and familiar faces for fear of breaking down in front of other eyes.

Everything I had imagined about myself had disappeared...I felt myself splitting in two. There was the woman I was before and the one I was now, my old life sitting on the surface of me like a bruise. The real me was beneath that, pulsing under all the things I used to think I knew. Will you take me as I am? (from Wild, Cheryl Strayed)

Today is different. I am brave. I am me. I am unapologetic. I have shed the façade and come alive in my own skin. I am on the second leg of a return trip to being myself. I think I like who I am becoming.

The kids and I, we leap off into public spaces, parks and stores and streets and churches. Our small band of blood wards off ghosts of lives past, but most of all we are just jumping in with both feet, smiling at people who stare at us, laughing when strangers who used to know us gawk at the way we are now. No longer do my nerves start to jangle when I spot someone from my old life. Instead, I feel my soul expanding like the wings of a giant bird on a jet stream high above terra firma, because I soar on a different plane now, unmoored completely from The Way I Should Be.

If it is a day for dancing, I shall dance.

A day for singing, I belt it at the top of my lungs.

A time for sorrow, who cares who sees my tears?

If the joy is worth the mess, then I could care less about the mess.

"…for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength." (Philippians 4:11-13)

Linked to Joy

Courage to be the expert

The white and black of the printed page is covered in red ink. I am laughing on the phone with a believer in the South, and the red ink exhilarates me instead of scaring me. It has been thousands of days since I started down this path, and finally I can see the end. I push hard, long into the dark of night, the keyboard clicking against deadlines and my eyes burning from hours in front of the computer. It takes courage to look the dragons in their eyes and say, I think I can do this! I notice every time a strange obstacle emerges, and I think about spiritual warfare. It might not feel like I'm doing something for the kingdom, writing technical papers and conducting pilot studies, but why else would I be fighting so hard against things unseen to finish this race?

It takes bravery, too, to step away from the writing, to set aside the task that looms long and large, and feel spring with my children. To praise God for the sound of bird songs in my deaf ear that still can't understand people's voices. To see rainbows in the boiling water mist at dinner time. I look at the plane ticket confirmation, and it says 30 days to departure. One month to complete this task. I sigh deep, bone tired, and ask Him to fill me up, imbue me with strength so I can finish well. Does it matter to Him, I wonder? If the hairs on my head do, certainly He cares for my dreams. So I will be brave, and push on into the unknown.

written on Lisa-Jo's prompt, Bravery

Chronology

Reading the lyrics of "Wonder" by Natalie Merchant the other day brought me back.  Made me think some things over.  I had to scan a few photos in for another post, photos from my childhood album.  This is my favorite picture in that album.  Whenever I start thinking I might be making some headway in this photography hobby of mine, I look back and I am reminded that I have a long way to go to match my dad's black and white film and Canon A1 with it's old kit lens...a photojournalists camera, his first major purchase as a high school student.

I remember fainting and nearly dying at a friend's wedding when I was in high school.  I remember them thinking I was pregnant and hemorrhaging or something, and how I said a thousand times through gritted teeth that was impossible.  Made some remark about a second virgin birth.  I remember that it felt like an accomplishment to have these graduation pictures taken...to graduate.  Already, I was sure of nothing.

There was a day when the tallest of my brothers still fit in my lap.  I remember missing him when I decided to move to campus for my second year of college.  I remember trying to put blush on just prior to this photo so I would look a little less dead.  I look back on that decision, the decision to move out of my childhood home, and it is one of the few I truly regret.  It started an inexorable trajectory that pulled me away from Christ and introduced so much more pain in my life than had to be.

I kept fainting.  I was wheelchair bound for part of my sophomore year.  I lost weight.  I woke up once to a professor giving me mouth to mouth.  I kept taking pictures, trying to learn to be like my dad and mom.  I questioned God and especially Christ.  I didn't understand what it meant to share in His death.

I made new friends and squeezed in a few duets between hospital visits.  I went to Mayo Clinic in Rochester, MN, and they told me I had heart failure and I might need a new heart.  They told me they didn't know exactly what to make of my situation, and put me on six different medications.  It seemed to work pretty well, even though they didn't know what they were doing.  I tried to forget about the God I felt abandoned by.

I kept playing hockey.  I loved it and I was afraid to stop.  I was afraid that stopping anything would mean that I was giving up, that I gave in to dying before I hit 20.  My teammates begged me to take a break after I quit breathing once on the bench and once on a roadtrip home from a tournament.  I ignored them and wore a Medic Alert bracelet.

I graduated from college, even though some said I should never be a nurse because I might put my patients at risk if I fainted while on duty.  I had quit fainting in my junior year and finally got my driving license back for the first time since my freshman year.  I started drinking because I was no longer on cardiac medications.  I gained weight and felt horrible.  I started to wonder if God really was there.  I went to a hundred different churches, temples, tabernacles, home groups, yoga classes, B'hai meetings, and prayer sit-ins.  I couldn't find anything that explained anything.  I accepted, once again, that I did truly believe in the Christian God.  I started to read the Bible every day.  I figured if I could conquer all 1,600 pages of Les Miserables, the Bible should be light reading.  I read straight through and found it surprisingly interesting.

I didn't really know what to do with a new lease on life.  No one could explain why I got sick in the first place, nor why I got better when I did.  Doctors cautioned me that it probably wouldn't last.  I decided taking care of people even sicker than me would be a good start.  I understood what it was like to be a sick kid, so I became a pediatric intensive care nurse.  Some of my patients were on dozens of I.V. medications, each I.V. pump outweighing their tiny bodies.  I worked constantly to drown out the noise in my own head.  I read my Bible every single shift.  Lamentations, I and II Corinthians, and the Proverbs became my favorites.  I wrote notes on almost every verse.  I loved those kids as hard as I could.  I cried with their families when they died.  I kept a book of all the stories I never wanted to forget and someday I planned to write a real book from them.  A little girl named Sissy broke my heart.  I applied to become a medical foster parent so she would have somewhere to go.  She had been abandoned at the hospital to get a heart transplant at age 3 and her parents never could be found until after she died.  She died the day after I submitted my application to become her parent.  I had big questions for God.  I still don't know the answers to some of them.

I kept taking pictures.  I still wasn't as good as my parents.  I spent a lot of my overtime pay on film and film developing.  I broke an engagement.  I tried to get started in a church and failed.  I was afraid to bike some days because I could tell my heart was giving out again.  I prayed that God would rescue me.

He showed me I was redeemed when I held hands with my future husband for the first time during a prayer circle around a dying child's bed.  I didn't know I could ever feel that way about someone in an instant, and I was pretty sure it was divine intervention.  I hoped my future husband wasn't blind to God's will, because my heart was already broken physically and I wasn't sure if it could take another crack.  He wasn't blind to God's will.  He listened to a wise, Godly couple and grew closer to God and got to know me better, just because they said he should (that, and my "algore is a risky scheme" sticker convinced him it was worth a shot).  Somewhere around the time we started dating, my heart stopped again.  Out of the blue.  I was down for 4 minutes and everyone said it was a miracle I wasn't a vegetable.  I signed myself out of the emergency room A.M.A. before they could get a 24 hour hold placed on me.  I didn't follow up with a cardiologist.  I tried to trust God, and failed miserably most of the time.  I told Aaron when he asked me to marry him (well, later on in the evening).  He didn't seem to mind that I might die.  He said everyone does sometime.  We got married.  I was happy for the first time in many, many years, deep down in my core.

We had four kids, even though doctors said neither of us were capable.  They came pretty close together and knocked the socks off the medical world.  I got cancer.  Doctors gave me odds of survival.  I barely listened.  I had a tubal because my heart started to fail again when I was pregnant with Caleb.  It didn't work.  I got pregnant again, and there is another baby waiting for his first hug in heaven.

I still don't know why He put me here.

I still don't know why He kept me here.

I still don't know if it will be my heart that brings me home to heaven, or my cancer.

I do know that nobody has an answer for me, except God.

I do know that it is safer to trust Him than to doubt Him.

I do know that when the day finally comes, and my ticker stops for good, there is a mansion waiting for me on the other shore.

The dark path

But that was a long time and no matter how I try

The years just flow by like a broken down dam.

There's flies in the kitchen I can hear 'em there buzzing

And I ain't done nothing since I woke up today.

How can a person go to work in the morning

And come home in the evening and have nothing to say.

Just give me one thing that I can hold on to

To believe in this living is just a hard way to go
~John Prine~

Searching.  I am sure I have questions answered, so positive I practically skip instead of walking.  And then, in the darkness of a new time of testing, I turn my ankle in the same holes.  One minute, I have the clearest sight and surest perspective, as a worshiping woman confident in her faith.  The next, I am blinded by my ignorance and my tears as I struggle with the weight of the world and wonder from where help will possibly come.

Last week was Amelia's worst week.  I was suffering the worst heart rhythm issues I've had since last summer, and it was demanding my attention so that I might employ the limited means I have learned to prevent major catastrophe.  And I failed my comprehensive exam in my doctoral program.

I've been told that the testing and the agony and defeats are all signs that I am on the wrong path.  That the spiritual path planned out for me is a smooth one, with only an occasional divot...not like this one I am on, riddled with dents, rocks, and sticks on which to stumble.  I used to picture my "life path" as a mowed path through one of those ethereal forests I read about in books.  A smooth path, perhaps a short growth of grass, clover or wildflowers.  Filtered sunlight dappling the landscape.  Bird song lifting the spirit as I danced and twirled through the life God planned for me.

This place is very different.  It is a real forest.  The path is just a footpath trod by a few before me.  The thick underbrush hides the stones on which I turn my feet.  I constantly bend to push the branches away from my face.  The air is thick and close, and the sun shines through only rarely.  The light is a strange, dark and hallowed green.  There are thorns that scratch my legs, and the trees and brush on either side grow so thick they are impenetrable to my eye.  Am I navigating correctly?  Should I turn and go back, revisit some milestone to be sure I am still headed the right way?  What dangers lurk in the forest surrounding me?  I feel exactly how I feel coming home down the long valley behind my house, on a footpath just like the one I've described.  I have "peace that passes understanding".  If you are a stranger to my path, to my home, your only response to my sureness will be consternation.  But I am sure this is the path home.  I know it in my bones.  It doesn't matter a whit what the path looks like, nor how many stumbles, scratches or bumps attend my way down it.  It leads home.

There is so little I am sure of right now.  I am not sure how life will go for my sweet Amelia.  I don't know how epilepsy will affect her siblings.  I have no comfort for my tears at night.  I don't know how God is expressing love and mercy in my life right now.  I don't know with what clarity I will reflect back on this time in 5 or 10 years.  I don't know if the tens of thousands of dollars I've spent on a doctoral degree I have been called to study for will be wasted or not.  As my heart flips awkwardly in my chest, I don't even know what the next seconds hold.  Life is uncertainty, at best.

But I do know that the words of John Prine in the song I quoted above - however achingly beautiful and reflective of the struggle that is this uncertain life - are not my life's song.  I have found that "one thing that I can hold on to, to believe in this living is just a hard way to go".  Blessed is the man whose strength is in You, who have set their hearts on a pilgrimage, in the valley of weeping (Psalm 84:5-6).  God - the one who "will be who He will be" - the one I cannot understand...He is my one thing that I can hold on to.

In the morning, when I rise

Give me Jesus.

You can have all this world,

Just give me Jesus.

When I am alone,

Give me Jesus.

And when I come to die,

Give me Jesus.

Take time to watch this video. She says it better than I.

Mid-night journal

Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. ~ Philippians 4:6

This verse is an oldie, but goody (my brother Daniel used to say that as a small boy, and it still tickles me deep within to say it). Tonight I am up as the first pink glaze of sun appears in the pines out my bedroom window, heralding the end of night and beginning of another morn...up all night trying hard to put actions to this verse. It has been a night of prayer, a night of reading, a night of closing my eyes in near delirium and still the prayers flow and the sleep does not come.

How many times had patients sat there waiting for her to announce her decision after a similar moment of respite? Invariably the decision was based on science and statistics, a conclusion crosschecked and attained by logic. What a cask of horrors, she now thought, lies concealed in this moment of respite! Dontsova had known what she was doing when she had concealed her pain from everyone. You only had to tell one person and irresistibly the avalanche was set in motion, nothing depended on you anymore. Her ties in life, which had seemed so strong and permanent, were loosening and breaking, all in the space of hours rather than days. In the clinic and at home she was unique and irreplaceable. Now she was being replaced. We are so attached to the earth, and yet we are incapable of holding onto it. She was so used to taking personal charge of everything that even today she couldn't leave a single person without making at least a month's mental forecast. She was getting acclimatized to her misfortune. She examined, prescribed, and issued instructions, gazing at each patient like a false prophet, while all the while there was a chill running down her spine. These were the thoughts that plagued her and weakened her normal resolute cast of mind. She looked at one patient...they had given so much of themselves to try to save this quiet Tartar, yet all they had won was a few months' delay. And what miserable months - a pitiful existence in an unlit, unventilated corner.

It made Dontsova realize that if she rejected her own yardstick and adopted Sibgatov's, she could still count herself lucky. ~ from Cancer Ward, by Aleksandr Solzhenitsyn, true stories based on his own 2 year battle with cancer in the mid-1950's

As the bleeding heart blooms in the spring afternoon sun, I contemplate losing a part of self. Not just figuratively, like last time, but literally this time. I agonize over the prayers I've prayed of willingness for cancer. I long for a different, easier way.

I walk around the house, and see the writing literally written on my walls...the signs that open the door for this kind of trial, let God in to tear things down and build them back in a totally different shape. I start at the front door, and the words flow in this order: with God all things are possible. As for my house, we shall serve the Lord. Love like there's no tomorrow. A cord of three strands is not quickly broken. Verses, sayings that reflect our intimate understanding in this marriage and house that this is only temporary. The suffering is temporary, the joy is temporary, the work is temporary.

What am I supposed to do with the fact that we are so far outside the realm of normal experience that most people are simply confused by our story? We have asked ourselves and each other times innumerable whether this is a wake up call. We still don't see it, if we are being woken to something...and that is so frightening! How much further might God push to show us what we seem to be blind to? And might it not be a powerful Evil that foists this suffering upon us? Might we have something in our future that is so definitely for God's glory that Satan might try to destroy it? And why, then, would God allow it? Could we really be a modern day Job story, a modern day David, hunted and oppressed and beaten and crushed? Could we share the sufferings - and deliverance and beatitude - of Paul, Timothy, Noah, Moses, Elijah, heck, all the prophets?

The next step comes Wednesday. I have surgery at 10:30 a.m. to remove the lumps. They will be biopsied for cancer, perhaps sent to a specialty lab if they come back one certain type...follicular, the type of thyroid cancer cell origin, and also possible in the breast. We may know immediately - and I may lose my breast on Wednesday, too. Or it may take weeks. But at least the lumps will be out, gone, frozen in liquid nitrogen and sliced and examined and done with. What follows is a big question mark that has me sleepless, petitioning, taking fear into my two hands and throttling it with Scripture. So many questions have no answer...but what to do? is not one of them. I simply pray. I plead. And I read.

A positive and active acceptance

"If ever a woman accepted the demands of her own life with simplicity and grace, it was she. It was a positive and active acceptance of the given." ~ Elisabeth Elliot

As the initial blush wears off the Chicago news, the impact of the message is seeping into the cracks of my soul and filling in the grooves of uncertainty between every tile of information stored there. Five years is a long time. I continue to pray for acceptance with simplicity and grace, the fortitude to choose a positive and active acceptance of my new given. It will be a long hard task to do so consistently over time.

Sometimes the sky looks dark with not a ray of light,
We're tossed and driven on , no human help in sight;
But there is one in heav'n who knows our deepest care,
Let Jesus solve your problem - just go to Him in pray'r.

It will be worth it all when we see Jesus,
Life's trials will seem so small when we see Christ;
One glimpse of His dear face all sorrow will erase,
So bravely run the race till we see Christ.

~ Till We See Christ, Esther Kerr Rusthoi