“‘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

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 Danica and I slayed her. She’s resurrected and attacking 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 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 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’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 this 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 and I 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 I sleep less my joints get looser and my body weaker.

I’m just so very tired.

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 the FedEx with 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 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 I simply cannot pick the girls up from school even though it’s his gym day.

I’m paralyzed.
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

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4 Comments on Vulnerable.

  1. Caroll Aleshire
    February 13, 2020 at 6:58 pm (4 years ago)

    My heart hurts for you! It hurts for your girls and your husband. I will pray more frequent and passionate prayers for you and your family.

  2. Judy judy
    February 13, 2020 at 8:59 pm (4 years ago)

    I can’t imagine your pain and heartache. Seems trite to just say I’ll pray for you. When our kids hurt, emotional pain is terrible.

  3. Cindee Snider Re
    February 13, 2020 at 11:10 pm (4 years ago)

    Tonight, just breathe. It is enough. I’m so sorry, Kindred! For all of you. I wish I lived closer. I’d be there in a heartbeat. I love you. And I’m quietly holding space. ❤️

  4. Susan Barone
    February 14, 2020 at 1:56 am (4 years ago)

    Oh, my dear. You rest in green pastures! That’s a lot to process still And I can so relate to that loneliness. I do have friends who’ve known about all the ways I accommodate my chronic illnesses. They now seem to read my mind about what causes me distress. These 3 ladies I talk to often all turn 50 this year and want to take a girls’ trip. I don’t keep normal hours. I don’t sleep when most people sleep, and I’m chasing pain every morning, sometimes into the afternoon. I’m like the tin man every day. One of my friends in our chat just laid it out there that she didn’t wish me to feel any anxiety. If I couldn’t go, I couldn’t go, and they would be okay with that. She didn’t want me to feel the pressure to try to meet their normal. I cried when I read her texts. It touched my heart on the one hand, and on the other, I cried because I missed the me who didn’t have all these illnesses. I tell myself though that there are good days and they are that much sweeter when I have one.

    I am praying with you as you navigate the road ahead, and I trust that God will give you His peace.


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