September 2015 archive

In Everything You Do. Choose Life. Gauntlet Story Feast

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I have a beautiful new Gauntlet Story Feast story to share with you, but I haven’t quite finished getting it all together. My facebook memories brought up this quick post I made a year ago today on Team Danica. It left me in a puddle of tears. There is no way to number the minutes, the hours or the days when I have had to consciously choose life. It’s only by His Grace I’ve continued to say “Yes”.

Whatever you are facing today. Keep saying “Yes.”

“This day I call the heavens and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, that you and your children may live.” –Deuteronomy 30:19

This goes out tonight to every one of my warrior friends. We know what it is like to literally contemplate the choice with every dawn. How will we see this suffering, our own and that of our children today? Will we be paralyzed in the curses or move in the strength of the blessings towards the light and grace of this life . . . our life, the lives of our spouses and sons and daughters, our parents and sisters and brothers and friends???

CHOOSE LIFE.

SHARE YOUR STORY. If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

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If I Leave? Why I’m Going Away

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I’m sitting here in bed with a blinking cursor pushing me to keep adding words to this sentence, this paragraph and this post. I have six windows open on my laptop. My email, Facebook, Twitter, Pinterest, Instagram and WordPress are all places I share community. They are good. The relationships I’ve made and sustained on the web keep me from feeling isolated in my mostly home bound life. I connect with beautiful TRUTH here. I learn your stories. I watch your lives unfold for the glory of God. I share in your pain and struggles, and I pray for you. I celebrate your victories and accomplishments. I also channel my online life into real life with paper to pen, care packages and, if you live close enough, by inviting you to rest awhile on my yellow sofa to know and be known by me. I schedule phone dates with far away friends and even strangers who need pieces of my story to take the next step in their own. When I am not doing these things I am managing my own health care, wrestling with insurance and debt collectors and getting treatment. These things fill my days until my children and husband come home. I try to pour into them what I have left which is often the least of me. Every night I swallow five crazy pills supposed to slow down my brain and my body enough to rest, but I fall into bed with a racing mind and bursting heart. I make lists in my head or on scratch paper on my nightstand in the dark. I am overwhelmed by all the people I need to pray for. I am wanting to remember your birthday or send you a note of encouragement, because it might be the only real mail you get in your hard this week. My life is full because of this screen. I am grateful for it. I also know it is time to step away.

Something bred out of this culture of continuous sharing is the absolute inability to believe the world can and will go on without our input. We don’t know how to do real retreat. We don’t know how to stop the whispering or the shouting long enough to decide who and what we really are without it. I see this as blatantly in the Christian community as I do in secular media. Those of us who write are particularly prone to feeling we must keep our words out here. Isn’t that why God gave us the gift? I have been blogging since 2008, and it has been one of the most beautiful and challenging things I’ve done in my life. I’ve told truth here I would have never been brave enough to bare in any other place. This has wrecked me and healed me. The hundreds of people from around the globe who joined our Team Danica journey encouraged me to know people are hungry for community, and we are all more the same than we are different. My blog and social media gathered an army of prayer warriors for us. It became a place we humbly made our great need known and where God chose to meet much of it. I am grateful for it. I also know it is time to step away.

My heart aches to have been writing and submitting a book for publication before all this. I wish I could tell my story, birth it and give it away. No build up. No platform. No marketing plan or commerce. Just a year and a half of heart work poured onto pages. God, do with them what you will. Take my name off. He is the author. I am merely a character in this narrative of redemption. I’ve been told I am naive. I’ve been asked if this desire is driven by fear of failure. I’ve been asked if I want to be a writer or if I just have this one amazing miraculous tale to tell. Publishers don’t just want one good book. They want to know if you have another and are worth the investment they make in you. I wrestle with the deep threads of faith in my book making it a book only Christians will buy. Do I really want to shine my light into an already lit room. If not, do I pull a few golden stitches out and hope the Jesus shines through the strength of the story itself? I’m asked to focus on my target audience. Is it people who have suffered and are suffering? Is it my ever growing community of EDS and Chiari people who hurt exactly like I do? Or is this a story about finding gifts no matter what your gauntlet making it a book for almost anyone, because none of us are immune to the struggle?

If you’ve been reading here you know I had my twentieth surgery and seventh neurosurgery on June 24th. I never wanted this “new” blog to be focused on my continued pain, treatment or disability and especially not about our ever growing need for support. This is why I’ve been very quiet. Here’s the rub. This is my life. I spent the first eight weeks of my recovery without words. It scared me. I cried more than I have ever cried in my life, sometimes hours at a time. The loss of range of motion in my neck and the new normal I was facing terrified me. The pain from having skin and muscle and nerve cut down my head and spine for the third time in the same place was driving me into despair. I wanted to quit, and I felt the story I’ve labored over was a farce, because I couldn’t see a gift anywhere. At the bottom of the valley I had my finger on “delete.” God stopped me.

I cannot answer many of the questions I’ve asked above. I do know God is asking me to be quiet, pull away from ALL this here and focus completely on what I know for sure He called me to do. This means saying no to people in all kinds of ways. This means my children and husband will lose even more of me as I set my jaw like flint to finish this work. This means I have to believe my presence in your life on this screen is not necessary for a period of time and trust God to bring you other encouragement. This means I’m asking you to respect the absence but promise me you will be here when I return, because I will miss you all, and I need you too.

I remember a poem written by L.L. Barkat in her precious book “God in the Yard.” I found it quickly tonight as I pulled my well worn copy from the shelf. I had forgotten she wrote it for Ann Voskamp. I wondered if Ann was feeling these same struggles as she poured herself into her first book. I will leave you with it tonight.

Stayed: for Ann Voskamp

Why do we not
leave home.
Is it really for fear
of what lies
beyond, or rather
for fear that the
roof will abscond
with the doors
and the shutters
we’ve always known.
And who would they
blame if it happened
just so, if the whole
curtained place simply
picked up its stakes,
disappeared on the wind
in our absence. What
are we really afraid
of, why do we not
leave home.

I will be gone literally as much as figuratively over the next two months. I leave a week from today for a trip to Maryland for a scan and fusion check up with my neurosurgeon. I plan to head further south to the Virginia valley I love between the Blue Ridge to see my Angie after this. God has provided for me to take an overnight trip with dear girlfriends, a very long weekend at the beach with one of my most faithful five and an entire week of writing on Lake Michigan as I finish out my thirty-ninth year of life. Will you please pray for me physically as I continue to heal and learn how to live once again with new challenges? Will you please pray for the decisions I have to make about further PANDAS/AE treatment? I have decided not to continue chemo or add long term steroids, the next suggested steps from my physician, until my symptoms become unbearable and dangerous again. Will you please pray for God to provide for our family as He always has and for us to live this manna life with great joy. Will you pray over the words I am committing to write as I finish “Gauntlet with a Gift” and for God to make clear the path where it should land for His glory? I humbly thank you for taking these things to our God who already knows what we need and still beautifully invites us to enter in by asking.

(I will continue to publish Thursday’s Gauntlet Story Feast here, because your stories are important and are one of the main reasons the book was conceived. I have made commitments to several author friends to help launch and promote their own soul work, and I will be showing up, because their books are changing me, and I want you to read them and be changed too. Besides these things I will be quiet. If you truly need me I will check email and messenger daily.)

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Midnight Cancer. Please Ask With Me

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Angie and I

We were little girls. Long dark hair and deep brown eyes. Our hearts were knit like Jonathan and David’s. As years passed we both began to write. In journals. In letters. In the air we breathed. Behind the closed doors of our tiny bedrooms with day beds and dreams we talked about Jesus. His light was too bright to be dampened by an avalanche of doctrine and fear and doubt driving our search for an assurance He might genuinely love us for real and forever. We were serious and often sad because our hope seemed to be built on shifting sands blown by the winds of our ability to measure up and never on what He had done perfectly for us. When our church fell apart our friendship was swallowed by the chasm. We were coming of age. Our worlds had always been the same, day after day, service after service, hymn after hymn, and were suddenly separated in drastic ways. She stayed close to an upside down faith, and I ran as fast and far as I could away from everything God.

We attended the same University. Nestled in the beautiful Blue Ridge our kindred hearts were following polar opposite paths. While she sat and served in Campus Crusade for Christ determined to find the Jesus we always dreamed was hiding in the fearful mess we were told was absolute I was somewhere across the quad with fifteen thousand nameless students between us. I was drinking, using, giving away my body and crying out for someone to help me. She eventually looked for me to ask if I would be in her wedding. She found the husband we prayed for since we were children somewhere in the Christian microcosm of our secular school. I told her I couldn’t. It would be way too close to something sacred. I feared I was a powder keg that could blow the entire thing open. I watched her new Jesus loving friends surround her in long shiny dresses holding sweet smelling flowers while I sat near the back and caught whiffs of a rotting heart with a hint of tequila oozing from me.

Over a decade passed and God brought our hearts and lives together through a cancer diagnosis for her and months of hospitalization for me. It was through words we joined our hearts again and like nothing had changed and everything had changed we were knit soul to soul again. I drove from Maryland to Virginia and met her outside the cancer center for a day of chemo. Two little girls. Deep brown eyes spilling hot tears down our faces. One with dark brown hair and another with a knit hat covering her bald head.

Since 2007 my Angie has been through breast cancer, a second bout of thyroid cancer, colon cancer and now metastatic breast cancer growing and spreading in other parts of her body. Cancer that should have killed her.

Since 2007 I’ve had seventeen surgeries and levels and durations of pain that should have killed me.

I’ve often prayed God would just heal her. Take me and let her live. She wants to live, and I hurt so badly I want to die.

We’ve never compared our suffering. Our walks and often crawls through days are nothing like we dreamed our lives would be. They are as different as they are the same. But we understand what it is like to look at every single thing through the lens of great loss with it reflected back to us as a gratitude almost no one else gets to fully know. We waste nothing. We take nothing for granted. Ever.

My years away from God mired in deep and unspeakable sin have given me such an assurance of saving Grace. I know my living for Christ is just a hint of the dying for gain. More often than not I’m ready to go. I sometimes even ask Him to take me home instead of asking Him what He has left for me to do HERE in the Kingdom of God on earth.

In stark contrast my dear friend is begging for another day, another week and another month. She aches for a full life here before the crown of glory. I see her struggle with the fear maybe her salvation didn’t stick, and there might be a thought or word or deed able to separate her from Christ’s finished work on the cross.

Yesterday Angie got the results of yet another PET scan. Her text straight to the point. The cancer has spread again, deeper and further. There will be more chemo, stronger chemo, more frequent chemo. And then a peek into her soul. “Heavy, heavy heart.” I carry her heart. I sunk to the bottom of the pit with her.

Later she publishes her news and her hope and faith on her blog, Spring of Joy. She writes of the “spacious place” she will dwell in Jesus as they “move forward, looking to Him because there is nowhere else to go.”

I tried to sleep. I tried to pray. I tossed and turned. I checked the clock. Midnight. I wondered if she was awake too. Should I call her? Does she know I am keeping watch for so much longer than an hour. I am keeping watch until we find our way home.

I woke this morning exhausted. The time I slept I was dreaming. Nightmares. Cancer had a face. It was the powers of darkness shrouded in white lab coats and IV poles with bags of poison. I got my family off to school and work. I went in the bathroom and threw up. I cancelled my own appointments. I have to sit in this today. I have to wrestle with my God. I never ask “Why?” anymore. I’ve seen too many beautiful things born of suffering. What I’ve finally learned to do is ASK for something. Get on my knees. Stay on my knees and beg for a different outcome. “Your will be done on earth as it is in heaven” comes last not first. Kingdom. Power. Glory. Yes, God, all of this. But first I am going to ASK for you to stop the cancer. Turn the tides a different way. Make it shrink. Give her longer. I’ve seen miracles. I know for sure there is nothing too hard for my Jesus.

Will you ASK with me? Please pray for my Angie. Pray for her husband Brian and their children, Asher, Micah and Audrey. And if you wake at midnight remember this is when cancer is the loneliest and ASK again.

Midnight Cancer
By Mary Braddish O’Connor from her collection “Say Yes Quickly.”

Midnight Cancer
is a bottomless pit
where voices echo
around and around
endlessly
repeating the same
prayer:
oh
God
why
me?
Sooner or later, midnight
cancer changes to
morning
cancer,
brighter,
more hopeful.
Somewhere in the sun
rises warm and round.
Birds are singing.
After a while,
morning cancer melts
into afternoon cancer
where it hides among chores:
cut the grass
clean the downspouts
drain the noodles.
Later, the house falls silent
and even the dog is asleep.
There might or might not be rain.
Without a sound
you are falling,
arms wide and circling.
It’s midnight
You have cancer.

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