"Those who would like the God of scripture to be more purely ethical do not know what they ask."
Whew. A deep breath for the soul, and the body. Cancer de-saturates life. Everything gets a little pale as you struggle through the current of ongoing trials. And then God is merciful, and your soul breathes in deep and expands, and you remember how colorful and vibrant life really is. What a gift it is.
The sun-bleached images of late winter wash over my soul and reveal the new structure God has built in the last few months. New terraces for hope and solace. New supports for faith and fear - the good kind of fear, the fear that is awe of the Holy. I am pondering Haiti, and disasters, and what they tell us about the face of the God we cannot see. What does it mean to be planted in a prosperous culture, and what is our burden as Christians...even as people with humanity and empathy...to do for those who suffer great losses with few resources for recovery?
God is trying to get you to the place where you pass the test, the place where you answer these questions correctly. That's a difficult process.
When darkness seems to hide His face,
I rest on His unchanging grace.
In every high and stormy gale,
My anchor holds within the veil.
His oath, His covenant, His blood,
Support me in the whelming flood.
When all around my soul gives way,
He then is all my Hope and Stay.
When He shall come with trumpet sound,
Oh may I then in Him be found.
Dressed in His righteousness alone,
Faultless to stand before the throne.
~ My Hope is Built, Edward Mote, 1834*
*Bob Dylan credits this song as part of the inspiration for "Solid Rock", written shortly after he converted in the late 1970's and included on his second post-conversion album, Saved. How about these lyrics??
It's the ways of the flesh to war against the spirit
Twenty-four hours a day you can feel it and you can hear it
Using all the devices under the sun/And He never give up 'til the battle's lost or won.
Well, I'm hangin' on to a solid rock/Made before the foundation of the world
And I won't let go, and I can't let go, won't let go
And I can't let go, won't let go, and I can't let go no more.
...wine to gladden the heart of man, oil to make his face shine and bread to strengthen man's heart. He made the moon to mark the seasons; the sun knows its time for setting. You make darkness, and it is night, when all the beasts of the forest creep about. When the sun rises, they steal away and lie down in their dens. Man goes out to his work and to his labor until the evening. O Lord, how manifold are your works! In wisdom have you made them all; the earth is full of your creatures. (from Psalm 104, ESV)
They hang out in the summer, breathing deep of sunshine and daisies. They hang out in fall, among the scarlet leaves and Jack Frost nights. They hang out in spring, coming in damp and soft as soft from the first gentle rains. Even in winter, they stand there like stiff witnesses to mother love and stubborn refusal to pay high prices.
Never before, though, have they been frozen to the line for 5 long months. Not through the birth of babies, or deaths of relatives, or fainting spells or cancer. Today they crunched under my fingers, hanging on with their frozen creases to the line they had hugged since October. I've often thought to get them down. But haven't trekked across the crust, wading through the soft deeps and breaking trail through the drift by the water pump. No need to. Who has time to cloth diaper when the laundry stands 6 loads deep just to keep us in clean clothes?
Truth be told, I didn't even hang them out myself. A friend did it for me, in the first trembling, wary cold of October, when Amy lay recovering from influenza and waiting for surgery on her tonsils. Before encephalomyelitis, before seizures, and comas, and spinal taps, and chronic brain inflammation. Hopeful days, when I thought it would be a week of wading through trial at most.
His long body has grown since the last time we wore these covers. He is fascinated, today, with the bright colors, the touch of the cotton, the sudden wetness when he lets loose. Hopefully it will be a nudge toward potty training for both of us, clinging so desperately to babyhood and other kinds of ease. The motivation will come from wetness for him, and stink and laundry woes for me. Yet...he afraid to fall in, like all little kids; I, afraid to fall out of this stage of life and into the next. The stage where I have no babies in my house. I don't recognize that type of living. I haven't ever lived it with Aaron. I don't know exactly how it will fit my skin.
So today we started again, this cloth diapering business. Pried the frozen diapers from the frozen line, and began anew something abandoned since those early days of October. Our lives look so drastically different in some ways, and so familiar in others.
We live with chronic pain for the moment. We live with stumbling, crossed eyes, fumbled words, headaches, occasionally vomit. Life is messy. Always has been. Is a little more now than usual. I am struck a little dumb realizing how still I've become in 5 months of suffering. I look around at my home, and see how I have maintained the central area, neat, functional, happy. Yet all around the edges the neglect crowds in: closets needing organization, laundry out of control, dirt on the baseboards, abandoned piles in the basement storage. Cloth diapers pails that sat empty for a long, long time.
You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.
My bow bends so far in these early days of a semester. My thoughts fly quickly and frequently to the duties of school, newly resumed, and seemingly so pressing. One class this semester calls for a hearty dose of self-reflection, and today one student spoke about how her children's interruptions remind her what is really important in life. I find this humbling, and wish I could say so myself. As it is, I find school so infinitely more interesting, noble, and worthy of consumption of my time (keep in mind I often speak tongue-in-cheek) than the more mundane, laborious, continuous work of raising children. I feel, at times, that it is a bit ridiculous that God gave me a brain for research and science, and now I am teaching sums, reading, phonics, taking dictation from a 6 year old (and all that is ignoring the mono-syllabic communication with my youngest). I remember pondering this same conundrum when wiping some unrelated child's behind for the 100th time in a shift: seriously, why is it that my scientific mind is reduced to such a task? Yet, the wiping of the behind was infinitely more important to that one child than all the research in the world at that moment.
In the gifting of these children from my womb, God has spoken loud and clear. Behold, children are a gift of the LORD, The fruit of the womb is a reward. (Psalm 127:3) The trick is learning to drink the blessed cup that is offered. As in every stage of life, there is always a pasture that appears greener, more desirable. For me, in this time, it is often uninterrupted intellectual thought, or perhaps even an intellectual conversation with someone (!!), uninterrupted. Yet He has me walking this balance beam of school, work, children. Writing, grants, article to read; children, diapers, piles of unfolded laundry, dishes standing dirty in my sink. I have to take the dirt along with the intellectual polish.
Ali has been with us all week, helping lift kids, care for kids, and providing me extra rest after surgery. She is a trooper and a vision of God's grace in 17 year old form: dealing with a crippling migraine for seven days straight, she has been such a selfless helper nonetheless. Helps me put my own pain in perspective.
Sickness, and surgeries, and ongoing pain notwithstanding, the sun still streams into every corner of our lives and beauty still reigns 9 out of every 10 moments of every day. Our earth has not been shaken. Our house stands. We eat Rice Krispy treats for no good reason on an average Saturday. We are blessed. Unimaginably blessed, whatever valleys we have been through, whatever trials lie ahead. There is so much I have not lost.
Now to the one who can do infinitely more than all we can ask or imagine according to the power that is working among us- to him be glory in the church and in the Messiah Jesus to all generations, forever and ever! (Ephesians 3:20-21)
and the bottom gives way
and you fall into a darkness
no words can explain
and you don’t know how you make it out alive
Jesus will meet you there.
When the doctor says, “I’m sorry,
we don’t know what else to do.”
and you’re looking at your family
wondering how they’ll make it through…
Whatever road this life takes you down,
Jesus will meet you there.
He knows the way to wherever you are
He knows the way to the depths of your heart
He knows the way because he’s already been
where you’re going
Jesus will meet you there.
When you realize the dreams you’ve had
for your child won’t come true
when the phone rings in the middle
of the night with tragic news…
Whatever valley you must walk through,
Jesus will meet you there.
~ Jesus Will Meet You There, Steven Curtis Chapman
Yet I trust she is in His hand. He cares so infinitely much more about this dear child than do I. Hard as that is to imagine.
Keep Amelia in your prayers, as she is throwing up occasionally, having the afore-mentioned subtle changes that indicate increased swelling or demyelination, and taking longer and longer naps each day. Weird how, with one bad experience, you constantly feel at the edge of an unseen precipice. My pain continues as well, unresolved. Hoping the infection isn't taking stronger hold in my abdomen. Praying some doctor, somewhere, will someday have a clear answer and God will heal me.
From my writing today on the subject why should nurses care about epidemiology:
I have a poignant memory of an "a-ha" moment I had regarding epidemiology, during my first residency week in 2007. I listened to a professor speaking eloquently about how we can define various populations of patients based on the statistics that describe them. In his presentation, he was focusing on the the fact that over 30% of health care expenditures are generated by less than 3% of the patient population, the "outliers" - the sickest of the sick. Epidemiology, as the study of frequency, risk, and cause of disease (British Medical Journal, n.d.), is concerned with disease both when it occurs in a majority, and when it occurs in a minority, like that infamous 3%. It is important to nurses, first and foremost, because being armed with information makes us more capable as we care for sick or hurting individuals. Yet it is important in other, more subtle ways, too: understanding disease and the statistics that surround it may help us identify those most at risk - either so we can eliminate them from a system governed entirely by cost, or so we can help them in a system governed by human compassion. We stand on a perilous balance beam between capitalism and socialism: should we provide services only to reduce risk, or compensate victims of risk with social insurance (Devarajan & Jack, 2007)?
Being identified as "high risk" could become a deadly game in a health care environment that is run by third-party payers (either private or public). We can no longer afford to walk into a doctor's office to obtain a diagnosis, nor can we afford to pay a nurse to come to our home to administer I.V. medications for our year of cancer treatment, any more than we can afford to buy a share in an MRI machine so we can have our brain scan or a cath lab so we can have a stent placed. Our ability to purchase health care is but a distant memory. Therefore, we are at the whim of the third party responsible for guarding - and financing - our health. Physicians face the conundrum of balancing the Hippocratic oath with a patient who cannot afford to pay for a service that is not truly within the power of the physician to prescribe or administer. Nurses balance beneficence and justice with hosts of minority, unemployed, or uninsured patients whose vast health needs build up over decades of missed preventative care opportunities and explode in a multi-million dollar inpatient care extravaganza that may do little to improve the patient's quality of life in the end. Insurers are left holding massive bills, and are faced with three unappealing options: increase the price, dilute the quality, or lessen the quantity. Who wins? Nobody. Who loses? Usually the patient. We, as health care providers, lose, too - as we throw up our hands and struggle to maintain our grip on our ethics, our dignity, and our show of compassion.
What happens to the "high risk" patient, and how does this relate to epidemiology? Epidemiology is at the crux of the ongoing debate about who should pay for health care, how much should be paid, what limitations are necessary and/or reasonable, and what happens to the 3% that generate such a huge percentage of annual health care costs. Epidemiology is how we established the 3%. It has the potential to identify the 3% long before they ever get sick, perhaps even before they are born, if the science of pre-implantation genetic diagnosis continues to explode (Verlinksy et al, 2002; Verlinsky et al, 2004). This could mean we rush in to find solutions to the problems that place this group at such high risk, or it could mean we abandon them even before they get sick, denying them coverage based on their risk (Davenport, 2009). Epidemiology has provided statistics that have allowed a business loophole for private insurers for decades when it comes to high-cost patients such as those with certain cancers or cardiac conditions (Schwartz, Claxton, Martin & Schmidt, 2009).
As nurses, this may affect us in two ways: first, it may tell us who requires the most intervention from a physical care perspective. It may help us identify populations in which our current preventative care methodologies are not effective and point our most innovative scientists in a direction for inquiry that will aid those most in need of new ideas and new approaches. Second, it may tell us who we must rush to protect. If health care becomes a statistics game based on an epidemiological formula, that 3% is in danger of becoming a severely marginalized, underserved, and vulnerable group. We need to design solutions that create a healthcare system that serves, protects, and rescues those most at risk, rather than a healthcare system that denies benefits, coverage, treatments, or help to those most vulnerable. The information is being gathered daily, globally, in electronic health records that are scrutinized by analysts and risk adjusters: the information is just information, not inherently good or bad, dangerous or ambiguous. As always, ethics is what we do with the information we gather in epidemiological study. The debate is the history of nursing concentrated down to a statistical percentage: epidemiology must be our call to arms, not our excuse to retreat.
British Medical Journal (not dated). What is epidemiology? Collections. Accessed online January 12, 2010 at http://www.bmj.com/epidem/epid.1.html.
Davenport, T. (2009). Why health care reform is vulnerable to smart analytics. Harvard Business Review: Information & technology blog. Accessed online January 12, 2010 at http://blogs.hbr.org/davenport/2009/11/how_how_analytics_and_could_di_html.
Devarajan, S. & Jack, W. (2007). Protecting the vulnerable: the tradeoff between risk reduction and public insurance. The World Bank Economic Review, 21 (1), 73-91. Accessed online January 12, 2010 at http://www9.georgetown.edu/faculty/wgj/papers/Devarajan-Jack-WBER.pdf.
Schwartz, K., Claxton, G., Martin, K. & Schmidt, C. (2009). Spending to survive: Cancer patients confront holes in the health insurance system. Washington, D.C.: The Henry J. Kaiser Family Foundation and the American Cancer Society. Accessed online January 12, 2010 at http://www.cancer.org/downloads/accesstocare/Spending_to_Survive.pdf.
Verlinsky, Y., Cohen, J., Munne, S., Gianaroli, L., Simpson, J., Ferraretti, A. et al (2004). Over a decade of experience with preimplantation genetic diagnosis: A multicenter report. Fertility and Sterility, 82 (2), 292-294.
Verlinsky, Y., Rechitsky, S., Verlinsky, O., Masciangelo, C., Lederer, K. & Kuliev, A. (2002). Preimplantation diagnosis for early-onset alzheimer disease caused by the V717L mutation. JAMA, 287, 1018-1021.
~ A Path Through Suffering: Discovering the Relationship between God's Mercy and Our Pain, Elisabeth Elliot
Did you know I was a librarian? For 8 years? It was my first job - a volunteer position my mother finagled for me at the local public library at the age of 12. I learned Dewey Decimal, card cataloging, and became intimately (and fearfully) familiar with the dusty, cob-webbed annex in the attic of a century old building on our town's tiny Main Street. In college, I ran the reserve library - the place where pre-Internet students went to request microfiche copies of articles in scholarly journals, where I was connected by telephone and fax data line to millions of librarians elsewhere in an spiderweb of data strung along hard wires the world over. Books have been passionately, intimately wound through the song of my existence since my earliest memories of childhood. They are the friends I still turn to in the darkest solitude and grayest dusk of days of trial.
There is one book that has quietly trumped all the others I've read: it's sophistication, nuance, provocation, hilarity, command, and humility intrigue me. It is, of course, the Bible. The Living Word. I didn't quite believe in it's power for so many of the years I read it. I read the hollow words of promise that didn't ring true at the time: so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it. (Isaiah 55:11) I pondered the esoteric words of John 1, and wondered if anyone could ever understand it: In the beginning was the Word, and the Word was with God, and the Word was God. He was with God in the beginning. Through him all things were made; without him nothing was made that has been made. In him was life, and that life was the light of men. The light shines in the darkness, but the darkness has not understood it. Has anyone ever reckoned this statement? Has anyone ever understood it?
Why do we, as a culture, a society, a world, still cling to words that seem so meaningless and centrifugal? Why does this one book still command so much attention from me, an intelligent, cynical, wounded, floundering human being? What is there, in these confusing words, that rings true to the core of my being, that demands a response, that begs me dig deeper?
I am not alone in the world. I am held every night by the dearest, sweetest, hardest-working husband. My neck is held gently by baby hands, little feet cling to my hips through the day and the long dark night. Children clamor about me for love and attention. Even in death, you could say I don't have fear: I've left something on this mortal clod to be recognized, valued, admired. It isn't emptiness that baffles me, but rather that sixth-sense that there is something in that dark void. Someone. Someone who appeals to my rationality, my emotion, my intellect, my curiosity. It is the recognition that to ask why is to imply that there is someone responsible. There is something bigger, larger than the scope of my life, grander than the conglomeration of those who surround me and support me.
Amy Carmichael says that underneath are the Everlasting Arms. When anesthesia kicks in, and you are left crucified on a meaningless physical cross, stranded on an operating table with your fate sealed in the hands of a error-ridden surgeon and a team of human skill and mistake, underneath are the Everlasting Arms. You don't go into the void alone. You don't come to without sensing that deep, everlasting, conquering presence that has sustained you and held you through the hours of darkness and the months to come of suffering and healing. He is there with you. Forever. Whether you realize it or not. I am not - this selfish human form I inhabit - the purpose or reason for any of this. He is. I don't live or die for narcissism. Blogging isn't about what does or does not occur in my life. It is about how I am held. How I am loved, extravagantly. How grace is poured out, mercifully. How vigilant, kind, sovereign, just, omniscient this God is, who I serve.
I can't bring you to the trough if you don't want a drink. I can't open the Book to blind eyes. I can't speak to a deaf heart. What God has spoken to my heart, I will faithfully echo. What He sings through every melody of my life, I will harmonize. What He cares for, and loves, and heals, and serves, I will proclaim.
Without him, I am just a bare bones body on a funeral pyre. Without him, I am hopeless in a desolate world of pain. Without him, I am simply a legacy of a few generations, a voice of suffering in a world of complacency. I am just a cancer-ridden woman in a sea of healthy, shocked acquaintances who read my words and weep for my pain and move on for their sanity.
Don't weep for my pain.
Don't move on for your sanity.
Find out about this Word that changes and heals you at the core of your being.
Get to know Him.
Learn to love Him.
Live to serve Him.
Die for His glory.
Don't just let this be words that pour over you and never soak in.
He is calling.
Through the daily sufferings and disappointments, may my eyes never be removed from the face of my Father. O to grace, how great a debtor! Daily I'm constrained to be. Grace that brought me home for eternity through the Cross. Grace that preserved my life through the latest surgery and infection. Grace that knows every day between my beginning and end. How His kindness yet pursues me, mortal tongue can never tell; clothed in flesh, till death shall loose me, I cannot proclaim it well.
Tune my heart to sing Thy grace;
Streams of mercy, never ceasing,
Call for songs of loudest praise.
Teach me some melodious sonnet,
Sung by flaming tongues above.
Praise his Name, I’m fixed upon it,
Name of Thy redeeming love.
Sorrowing I shall be in spirit,
Till released from flesh and sin,
Yet from what I do inherit,
Here Thy praises I'll begin;
Here I raise my Ebenezer;
Here by Thy great help I’ve come;
And I hope, by Thy good pleasure,
Safely to arrive at home.
Jesus sought me when a stranger,
Wandering from the fold of God;
He, to rescue me from danger,
Interposed His precious blood;
How His kindness yet pursues me
Mortal tongue can never tell,
Clothed in flesh, till death shall loose me
I cannot proclaim it well.
O to grace how great a debtor
Daily I’m constrained to be!
Let Thy goodness, like a fetter,
Bind my wandering heart to Thee.
Prone to wander, Lord, I feel it,
Prone to leave the God I love;
Here’s my heart, O take and seal it,
Seal it for Thy courts above.
O that day when freed from sinning,
I shall see Thy lovely face;
Clothed then in blood washed linen
How I’ll sing Thy sovereign grace;
Come, my Lord, no longer tarry,
Take my ransomed soul away;
Send thine angels now to carry
Me to realms of endless day.
~ Come Thou Fount, Robert Robinson, written at age 22 in 1757 ~
More of His grace to others show;
More of His saving fullness see,
More of His love who died for me.
More about Jesus let me learn,
More of His holy will discern;
Spirit of God, my teacher be,
Showing the things of Christ to me.
~ More About Jesus, Eliza E. Hewitt, 1887 ~
To stay; to continue in a place; to have one's abode; to dwell; to sojourn;
To remain stable or fixed in some state or condition;
To endure; to sustain; to submit to.
To bear patiently; to tolerate; to put up with.
To stand the consequences of; to answer for; to suffer for.
This year I will stay with God, continue in this place, take up my dwelling as a sojourner in a land of suffering; fix myself in a state of submission and endurance; bear cancer patiently, learn to tolerate it, stand the consequences of.
I will suffer for Christ.
Cancer is the mirror in which I see glimpses of bittersweet glory on earth. The reflection of Christ's love in a million small ways. The image of submission in my life. Cancer turns my imagination toward heaven, that blessed and everlasting healing of my mind, body, and soul. The pool of deep thoughts. This year, I will learn to abide with cancer - with God - in a new way.
I challenge you: pick a word for 2010?
idea culled from Ali Edward's resolution
Behold, I will lay before this people stumbling blocks, blocks against which they shall stumble; fathers and sons together, neighbor and friend shall perish. Rejected silver they are called, for the Lord has rejected them...the Lord has rejected and forsaken the generation of His wrath. (6:21, 30; 7:29)
In times of sorrow, suffering, anger, questioning, how do I reconcile verses like these with verses on which I lean on for strength:
- Behold, I will never leave you nor forsake you (Hebrews 13:5b);
- Blessed is he whose sins are forgiven, who trespasses are not counted against him (Psalm 32:12);
- though I walk through the valley of the shadow of death, I will fear no evil, for you are with me (Psalm 23:4);
- the LORD your God goes with you; he will never leave you nor forsake you. (Deuteronomy 31:6)
- For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. (Romans 8:38-39)
Am I so arrogant as to think that my sin is forgotten because of any merit of my own? Rather, it is because the Father's gaze is fixed on Christ's sacrifice rather than my piddly, proud, pinching, puny and palinological sin!
Confusing, so confusing. Comments would be much appreciated!
All the tests showed very little: some thickening on one side of my uterus, a dark area where one of the tubes was removed, and a small amount of blood in my left lower abdominal cavity. Nothing that could explain the pain I was having, nor indicate a clear treatment plan. I was put on a narcotic drip, medicated for nausea, and admitted overnight for pain control with no real plan of action. This morning, the doctors all concurred that surgery was necessary, even though no clear-cut cause could be identified with less invasive testing. I was getting septic again - meaning whatever was causing the problem was now invading my blood stream - and just generally felt miserable. I still had that familiar moment of panic when they laid me out on the "cross" that is an operating table. I always want to get up, start pulling wires off, and say I've changed my mind. Today a simple verse sustained me: What time I am afraid, I will trust in Thee. (Psalm 56:3) That, and my anthem of late, Never Let Go:
Even though I walk through the valley of the shadow of death,
Your perfect love is casting out fear.
Even when I'm caught in the middle of the storms of this life,
I won't turn back, I know you are near.
I will fear no evil,
For my God is with me,
And if my God is with me,
Whom then shall I fear? Whom then shall I fear?
Oh, no, you never let go,
Through the calm and through the storm
Oh, no you never let go,
In every high and every low
Oh, no, you never let go,
Lord, you never let go of me.
I can see the light that is coming for the heart that holds on,
I can see an end to these troubles, but until that day comes,
Still I will praise you, Still I will praise you, Lord.
I sang the song aloud to my operating room staff after praying aloud for their skill and wisdom. I am always uncomfortable doing that - but it eases my fears and allows me to connect in a personal way while in a very impersonal environment. There are invariably tears on my part and theirs. I won't just be a chunk of nameless flesh on the operating table, draped into oblivion. I won't pretend that "routine" means "easy". Surgery is a very big deal to me.
So, what did they find that wasn't showing up well on the many ultrasounds and CT scans that were ordered? Some necrotic (dead and infected) tissue on the side of my uterus and throughout the area where my left Fallopian tube was removed. They cleaned out the black stuff, washed out my abdomen with antibiotics, and started me on a very specific, strong antibiotic. I am expected to be in the hospital at least through tomorrow noon-ish. Possibly longer as my pain may not be well controlled for a few days yet.
I woke up after hours and hours of blessed, restful sleep. The anesthesiologist put a wonderful little Scopolamine patch behind my ear, which seemed to completely prevent my normal vomiting post-surgery. My pain persists, although the highs aren't quite as excruciating and the lows even lower than before. I am praying for an easier recovery than last. I did have another Foley catheter for most of the day today, which puts me at risk for another kidney infection. Please keep my recovery in prayer. I am also still praying that this will be the 'magic bullet' that ends this long 3 month battle with my health. I start school again tomorrow, once again logging in to class from the hospital. Praying it is the last time I do that.
These photos are from a few days ago. What do you do when cancer lurks once again in the wings? Pull out a tea set! (I should have been a Brit)