Vulnerable in Chronic Illness – What Is It You’re Frightened Of?

VULNERABLE IN CHRONIC ILLNESS

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 in Patient Poets: Illness from Inside Out, Marilyn Chandler McEntyre)

VULNERABLE IN CHRONIC ILLNESS – WHAT FRIGHTENS YOU?

Today, I’m the deer.

I want to lie down in a safe pasture with the sun on my face and cease fighting.

I’m terrified of Chiari. It was the first enemy. Both my daughter Danica and I slayed her. She has resurrected and is attacking my firstborn, my unsuspecting Laney girl, without warning.

I’m angry from battling for insurance coverage for necessary imaging for Delaney – and now the process of appealing 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 pulls backward when I straighten my spine. I’m finding ways to curl up when I sit on the couch or in bed to reduce the stretching and burning. If I sway in my belly, it hardens with contractions like labor. I’m not emptying my bladder fully because I cannot feel it; as a result, I’ve had two UTIs in the past month. I will not seek surgery again until I’m unable to walk. I cannot.

VULNERABLE (BUT I WANT TO DO MORE THAN JUST SURVIVE)

I’m grieved by the hard decision to close doors to people and places I was sure God called me this year, to things I wanted that could prove I’m turning this pain into purpose, to things I wanted that might 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 those being chronically ill always will be – because only someone enlisted in the same war can crawl into the foxhole with me. Yet they can’t turn to look me in the eyes because our enemy is relentless (and their neck is most likely also fused). So many beautiful people are 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. How can I feel this hopeless about where we will live in a few months after all of God’s faithfulness to my family? 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 gets 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, 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 twenty pages of notes and reports and the discs of Delaney’s scans to FedEx to the neurosurgeon in New York.

No, 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 had promised the girls. I texted Dan and told him I simply could not pick the girls up from school even though it was his gym day.

Whisper of Truth

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) 

First published at monicakayesnyder.com. Published with permission.