It all changed so suddenly: one major medical test, a phone call, and a diagnosis that now shapes the rest of my life.
The last four months had been a nightmare. I came home from Africa the end of June to a forced
resignation from a job that had become my identity, constant sickness, and dramatic weight loss, which caused all sorts of accusations and whispers.
Yes, I was stressed. But something was not right with my body. I was dropping things, stumbling when I walked, and forgetting mid-sentence what I was talking about. The times I wasn’t able to identify common object were scary, but I had spent the better part of my life being told that things were “in my head,” so why should this have been any different?
Still, every time a test came back negative, it was a let down to hear "Everything looks good" when things were not good at all.
On October 1, 2012 I had the MRI. Then I put it aside and focused on my tasks at hand: moving, single parenting, attempting to home school, and waiting tables at night.
***
Waiting for my doctor to call was excruciating. I was pretty sure I was going to die and started planning my own funeral as I waited.
He diagnosed me with Chiari Malformation, meaning that my skull is too small, squishing my brain. Surgery is the only treatment, so four months later doctors opened the back of my head and removed a portion of my skull and the lining of my brain over the cerebellum, replacing it with the fascia from the muscle in my right thigh. The back of my C1 was shaved and several ligaments in my neck were removed.
It was brutal. It still is.
***
The ugly part of being sick was the band-aid type responses I received:
“God is going to do something BIG with this.”
“Just keep waiting, God will provide.”
My faith up to that point depended on what others said about God and living a good girl life. I thought God wanted me to have clean language and a toned down image and to be blessing others daily, thinking nothing of myself or my needs because those would be met by others. (I would come to see, even in sickness, they might not be.) Laying on verses and prayerful platitudes had been second nature, but now I wanted to reply, “Do you have a direct line to God and His plans for my life?”
I was involved in a Sunday School class of much older adults who were beautiful and gracious. They prayed, paid my rent, my bills, came with me to appointments. But I wanted, no, I needed people to be with me more. To sit with me in bed while I writhed in pain.
As the body of Christ I believe we are to bear each others' wounds. My favorite quote is from Frederich Buechner:
“What is friendship, when all’s said and done, but the giving and taking of wounds?”
***
The way I relate to people is different now. I want to know them, to hear their hearts and pain and let them know that that they are seen the way I never felt while sick. When I was sick, I was afraid no one would be there for me, so I want others to know that I will. No matter what: if it means lying in bed while they cry or washing them in the shower after surgery, I’m there.
I removed myself from the church for a time as I heal. There is loneliness. I sometimes wonder, though, if this is a season that God has brought me into, where it is just Him and me, sorting out the mess that surrounded the shattering of the girl I thought I was to find the girl I really am.
It took brain surgery to discover what needed to shatter
***
I have no idea why my life took this turn, but it did. I had to wrestle it out with Him, and the place I came to was this: I needed to stop relying on what other people said about God and find Him for myself. The platitudes people spoke over me had to be wiped from my understanding of what it means to follow Christ through sickness.
I’ve had several intimate moments with God since where He showed me in the most unconventional ways that faith was always about letting go of other people's ideas to experience God on my own.
I live in this body that still hurts daily, but it is also overflowing with the very spirit of God. I wrestle with God, and I question a lot. When I am in the most pain I scream out, “Why?" and pray for the pain to lessen like I was taught, but it usually doesn’t.
I have two scars that remind me of the battle. Then I pull from that war cry in my spirit and remember that no warrior comes out of battle unscathed.
I am a believer with a chronic illness who takes pain medication daily. There are the physical aspects I cannot get away from, yet I know God is with me--at physical therapies, speech therapy, waiting for neurology consult--whispering in my ear, “I am still here. Baby girl I never left. I was the one who washed you in the shower. I was the one who sat with you in bed when you writhed in pain.”
I do not believe much of what I did before. I still believe in the resurrection, the cross, and Jesus as God in the flesh, but I had to gently leave behind my old desire to please God though doing, quoting, and trying.
What I found was something beautiful. I found Bethany. The Jesus centered Bethany.
She is exactly who I needed to find.
Bethany Paget seeks to flesh out the truth, bringing Christ’s love to those she meets, her own heart, and her seven-year-old daughter. She seeks to use her new found voice and bravery in powerful, gracious ways. Her God-given passion for writing and creating show her that healing comes in all forms. She writes about life, faith, messy things, healing, and wearing cardigans and scarves while drinking Earl Grey tea over at www.allthingstruthful.wordpress.com.