What is it you’re frightened of?
asks my warrior side.
What fills your heart with such dread?
What happened to your coat of bravery you wore so confidently?
I feel like a deer sometimes, I answer.
I’m not always like you.
I want to lie down in flower-kissed pasture,
let my eyes close against the sun.
I don’t want to be poised for battle, I say.
My buttons can’t always cover what’s inside.
Don’t be disappointed by what you see, I plead.
More kindly now, my warrior side asks,
But what is it you are really frightened of?
The possibilities of the inevitable,
I manage to say in my soft deer voice.
Beverly Hyman-Fead (Patient Poets: Illness from Inside Out, Marilyn Chandler McEntyre)
What Is It You’re Frightened Of?
Today I’m the deer.
I want to lie down in a safe pasture with the sun in my face and cease to fight.
I’m terrified of Chiari. It was the first enemy. Both my daughter Danica and I slayed her. She’s resurrected and attacking my first-born, my unsuspecting Laney girl without warning.
I’m angry from battling for insurance coverage for necessary imaging for Delaney and now the process of appeal for the ones denied. Maybe it’s just a cover for how mad I am that this is happening at all.
I’m frustrated from fighting for care for an injury behind a tooth that has taken me to six appointments at four different dental specialists with no resolution.
I’m afraid of how sick I feel as persistent infections rage and my brain burns. There is no plan for treatment.
I’m devastated by the re-tethering of my spinal cord for the third time. I’m losing the feeling in my legs and feet. My neck is pulled backwards when I straighten my spine. I’m finding ways to curl up when I sit on the couch or in bed to make the stretching and burning less. If I sway in my belly it hardens with contractions like labor. I’m not emptying my bladder fully because I cannot feel it. I’ve had two UTIs in the past month as a result. I will not seek surgery again until I’m unable to walk. I cannot.
I Want to do More Than Survive
I’m grieved by the hard decisions to close two doors to people and places I was sure God called me to this year. Things I wanted to prove I’m turning this pain into purpose. Things I wanted to prove I am doing something else with my life than just surviving.
I’m heartbroken by the loss of intimacy with several close people in my life. I risked talking about my hurt. I forgot it’s safer to keep it to myself.
I’m lonely in the way being chronically ill always will be. Because only someone enlisted in the same war can crawl into the foxhole with me. But they can’t turn to look me in the eyes because our enemy is relentless (and their neck is most likely also fused). There are so many beautiful people waving flags and cheering from a distance. But I need triage instead of a parade. You can’t see that from over there.
I’m furious my children need a foxhole too.
I’m pretending like a good soldier. My husband needs me to say I’m okay. My girls need to feel I’m okay. If the bile starts to come up I swallow hard. Remember, Monica, if you say you are hurt too loudly people may decide to walk away.
I’m ashamed after all God’s faithfulness to my family. How can I feel this hopeless about where we will live in a few months? This need to know where we will shelter trumps everything else all the time. Dan emailed today, “When are we going to talk about moving?”
I’m paralyzed. This is just one more thing I am supposed to figure out.
I’m exhausted. Every night that I sleep less my joints get looser and my body weaker.
I’m just so very tired.
We Call Ourselves Warriors
Chronic illness is fraught with imagery of battles that might be won or at least an enemy that could be held at bay. We call ourselves Warriors in the fight for big and little things in our lives, especially access to care. This rubs against a faith that bids us to surrender to the will of God and His perfect plan, knowing that might include long-term suffering and even death for His glory. My mind and spirit are confused and fatigued by both.
I just want to lie down.
I didn’t prepare to FedEx twenty pages of notes and reports and the discs of Delaney’s scans for the neurosurgeon in New York.
I couldn’t write an encouraging #PenToPaper note to someone else to shift any of this weight into kindness even though it’s what saves me most of the time.
I didn’t make the pasta dish I promised the girls I would. I texted Dan and told him I simply cannot pick the girls up from school even though it’s his gym day.
Whisper of Truth
I wish I could scream.
I wish I could run.
I wish I could defect.
Instead I hear a tiny whisper of truth from a Word hidden in my heart.
“The LORD will fight for you; you need only to be still.” Exodus 14:14
*First published at http://monicakayesnyder.com/. **Published with permission.
Monica Kaye Snyder
Founder of Option EDS
Monica Kaye Snyder is a writer who blogs about a long journey of chronic illness and daily physical suffering. Some of her diagnoses include Chiari malformation, Ehlers-Danlos Syndrome, Tethered Spinal Cord, Craniocervical Instability, Postural Tachycardia Syndrome, Intracranial Hypertension, Mast Cell Activation Disorder and most recently PANS/PANDAS. She’s seen real miracles happen and holds on to Christ’s Hope as an anchor for her soul while living in great pain.
She is wife to Dan and mother to Delaney Jayne and Danica Jean. She knows for sure if she does nothing else well in her life this will matter and be enough.
She is founder of Option EDS (the retreat) and dreams of building a permanent respite home for EDS warriors in Tucson, Arizona.
You’re Invited to Discover More
Marilyn Chandler Mcentyre
Readers are invited to consider what caregivers and medical professionals may learn from poetry by patients. It offers reflections on poetry as a particularly apt vehicle for articulating the often isolating experiences of pain, fatigue, changed life rhythms, altered self-understanding, embarrassment, resistance, and acceptance.
This book will challenge and encourage you to listen to God and look for opportunities to be His gift to others. The idea that even in the depths of our own brokenness God can use each of us to be a gift to someone else is powerful.
Cindee Snider Re
REJUVENATE, REVTALIZE, REKINDLE AND RECONNECT
This insightful and enriching 10-chapter study, designed just for couples, offers you and your spouse a safe place to grieve, heal, grow, and begin to dream together again – to thrive as one – in sickness and in health.
#PenToPaper is a powerful, yet easy way to encourage one another and build each other up. Foster community, offer hope, let someone know they are not alone and that they are prayed for, cared about, and genuinely loved. We provide a beautiful starter set of stationery to encourage both sender and receiver.
Creative Ways to Serve
Chronic illness can make serving in traditional or culturally familiar ways challenging, but not impossible. Discover creative new ways to love God and others right where you are, however you are able.