“But even as hope died in Sam, or seemed to die, it was turned into a new strength…and he felt through all his limbs a thrill, as if he was turning into some creature of stone and steel that could neither despair nor weariness, nor endless barren miles could subdue.”–J.R. Tolkien, The Lord of The Rings
I’ve been home from Virginia for a week now. I continually reach up to run my fingers over the prickly hair growing back around a head wound gathered together with brutal metal staples. It throbs in a mending kind of way. Despite days of heavy rain and barometric pressure changes I’ve had no intracranial hypertension headache, and I can see clearly. This is what I prayed for. It is what I asked you to pray for.
It was my twenty-fifth surgery. It was certainly not minor. It involved replacing a clogged valve in my shunt and tubing in a ventricle in my brain that allows built up cerebral spinal fluid to drain. I had an unnamed anxiety I don’t have with my spinal surgeries, but the time in the operating room was much shorter, and I was in the hospital only forty-eight hours post-op. The few days of respite I found in late February in Arizona were completely undone by the flight home and the loss of my shunt function. The fifty-nine days leading to this surgery included three trips to Charlottesville, Virginia, the last two with hospital stays. Danica’s Hopkins trip was sandwiched in. If you’ve read our story long you know I manage different kinds of pain with varying levels of grace. Pressure at it’s worst renders me completely disabled and hopeless. There is no medication that brings me relief. The level of fluid that collects in my subarachnoid space puts me at risk for stroke and permanent blindness. This is my fifth shunt. I had three lumbar peritoneal shunts that all eventually failed due to calcification of the device and tubing. My first ventricular peritoneal shunt was placed exactly one year to the day before this revision. It was a miracle and gave me total relief from symptoms. I can’t imagine having gone through my huge fusion in October or Danica’s surgery and recovery without the healing I was given.
The trauma of the process of surgery when multiplied over and over cannot be explained. Something about this shunt failing when it did, the suffering along with the fighting and traveling for help and the reopening of my head unhinged me like nothing else has before.
I’ve been completely undone.
I’ve wept buckets of tears.
I’ve hidden in shame.
I’ve lied and said I’m okay when I am not.
I am not okay.
I’ve been curled in the fetal position gasping for jagged breaths. My mom dropped the girls off after school every day, and they would find me in bed with bloodshot eyes and a pile of snotty tissues. I cannot disguise this kind of fear and grief from them. I tried to explain, “This happens sometimes. It’s the anesthesia. It’s the stopping of pain medication. It’s the first opportunity I’ve had to mentally and emotionally process an impossibly hard year…” I prayed with them. After all, this is the right thing to do. When we are hurting we take it to God. When we are afraid we trust in Him. I answered texts and emails with the tone of healing, but I did not answer my phone or let anyone visit. Before Dan would get home I got out of our bed, washed my face and greeted him at the door. I pretended for him in a way I didn’t feel I needed to with Delaney and Danica. He says he is only as well as I am. I couldn’t bear to tell him how desperate he should be feeling.
The anxiety has been all consuming. For the first time in a decade I’ve begun to doubt my salvation. It’s as if I suddenly realized THIS IS MY LIFE. There is no asking for this cup to pass. EDS cannot pass. None of this intervention can be fully healed on this earth. This is not a faith issue. This is strands of DNA and failing flesh. What do I do with that? My body will never be more well than it is now. I’m forty-one years old. I won’t ever turn my neck to the left or the right again. I’ll never not have a bulging device sewn into the front of my head. The relief I’ve sought has plunged our family into a chasm of debt we will never recover from. I feel selfish. I feel ugly. I’m second guessing every time I’ve fought for better if this is as good as it can be. I feel like a liar, because I’ve said hopeful things for so long now. I believed them. I held others up with the faithful words of a God I now question. I want to open my laptop and delete all of Gauntlet with a Gift. I want to delete the files from the years I wrote at Team Danica and the years I’ve written here. Was any of it real?
Friday I did everything I could to move myself into a different head and heart space. I didn’t get back into bed when Dan and the girls left for the day. I made the bed. I showered and shaved my legs. I washed my hair and tried to style some pieces over the hideous incisions. I was exhausted. I needed to go to the post office to buy stamps for bills and mail a few love gifts. I had a panic attack. What if the postal workers notice my head or a stranger asks what happened to me and I break down in public? I considered not going, but my friend’s birthday was the day before. She’s fighting cancer, and I was late to love her, so I breathed in and out, and I got in the car. In the pouring rain I drove myself to a tanning place, and I went in and paid for ten minutes of light therapy. UV rays and vitamin D have helped in the past. It was full of people with the same idea including a rogue Axe body spray wearing male somewhere in the salon. Half way through my time I was in a crazy mast cell attack. These are always worst after surgery. I cried. I used a gross tissue in the bottom of my purse to try and straighten up. I went through the Starbucks drive thru and bought a venti white mocha with whip. I just needed to practice some self care, right? It was going to be fine. I drove to school to pick up my Delaney and Danica in car rider line. I listened to my favorite worship music. I cried. I used my sleeve to try and straighten up. I felt something stir inside me, and I posted a picture of healing IV bruises on Instagram. Sometimes saying things are getting better might actually make things better. Words have power like that. But not this time. I got home and crawled back under my weighted covers.
Yesterday was Dan’s only day off. For our family this means we have to get things done, because I cannot lift laundry baskets or grocery shop. While I was away Dan helped Danica go through her drawers and take inventory of how little she fits in and make a list of what she needs for a new season. We drove to Old Navy first. The smell of the store brings me to my knees. I knew I had twenty to thirty minutes max before I got deathly ill. I fake smiled and acted excited as we looked through the clearance rack and sale priced items and matched a few outfits together and found two dresses, because Danica is determined to get this family to church no matter what, and she has to wear a dress. I had a fifty percent coupon for Michaels and Danica needed a plain white t-shirt to paint at school for field day…a day she won’t attend, because of her restrictions, but she still wants to do a shirt. If Old Navy is Agent Orange to me then Michaels is Napalm. Our in and out trip left me shaking. We were back in the car and were supposed to get the Target health and beauty and groceries next, but I couldn’t. I had to get home immediately. I cried. I spent the afternoon between bed and the bathroom. The fallout from visiting those two stores would be hours of sickness. Danica was so happy with her new things. Dan and Delaney had to go back out. Danica came to snuggle me, and I cried. I told her I was sorry. I reminded her our family rule, “We all get to feel how we feel.” I reminded her how sad surgery can make you. She squeezed my hand and went to her room to play with her dolls. I cried.
Finally, I did the brave thing. The hardest thing. I reached for my phone and dialed the number of my older sister, Rochelle. She’s the one who has seen me at my worst and never looked away. She’d driven to the hospital just a week before to sit with me. She’s done this more times than I can count no matter what state my surgery is in. She shows up. Just a week before she somehow came over the mountain from West Virginia, a three hour drive, to sit in the UVA emergency room with me for an hour. She just shows up. I do pretend with her sometimes, but she knows. She can hear the empty lilt to my voice as I offer very little personal information and ask her a bunch of questions instead. This call began the same way. I asked how she was. I listened to the joy of her busy week watching my nephew Avery play tennis in a regional competition. Without warning my pain came pouring out of me like a river breaking dam. With every word I was finally moving towards truth. Of course, I know this. Say it out loud. Name it, and it loses power. Tell someone who knows your whole story. Tell someone you can trust with your heart. They will speak gentle words back to you, and you will move an inch toward healing and light. She listened. She cried. She allowed me to be exactly where I was without judgement. The only thing she wouldn’t let me leave with was the feeling I was no longer a child of God. She reminded me He already finished this big fight and won, He is for me and there is nothing I can do to to lose this love.
Later in bed I was crying again. Dan took my hand and held it tightly. He never tries to rush me to something else. This morning he left for Dayton for an overnight overtime trip. His leaving brought my fear back to the surface. I did something else brave. I texted my parents. I told them how I’m not okay. I asked them to pray. After church they brought me a chai and picked up Danica to spend the afternoon with her. I sat here in my nest chair and opened my Bible to Psalm 88. It’s a Psalm of lament that doesn’t try to end on a high note. It doesn’t try to rush you to something else. God gave it to us for a reason. The last words from Heman, one of the pioneers from the singing guild set up by David, are, “Darkness is my closest friend.”
Timothy Keller writes about this Psalm in his book Walking with God through Pain and Suffering.
“Three times in the Psalm the word ‘darkness’ occurs (v. 7, 12, 18). The effect is to say it is possible to pray and pray and endure and things not really get any better. The Psalm ends without a note of hope and so its teaching is that a believer can live right and still remain in darkness. Darkness may symbolize either outside difficult circumstances or an inner spiritual state of pain. That is the very realistic, tough message at the center of this Psalm. Things don’t have to quickly work themselves out, nor does it always become clear why this or that happened. One commentator wrote: ‘Whoever devises from the Scriptures a philosophy in which everything turns out right has to begin by tearing this page out of the volume…The very presence of such prayers in Scripture is a witness to His (God’s) understanding. He knows how men speak when they are desperate.’ Kidner’s point is this. If we believe that God through the Holy Spirit inspired and assembled Scriptures for us, then we see that God has not censored prayers like this…God remains this man’s God not because the man put on a happy face and controls all his emotions, but because of grace.”
And so today I sit with a God who doesn’t try to rush me to a praise especially when my Hope seems to be dying. Somewhere in the deep sorrow I feel the tiniest shiver of a goosebump of joy. I want the ache to eventually drive me into a greater sureness of His love for me and strengthen the belief that my afflictions will someday be once and for all eclipsed by His glory. Until then I lament and He listens and loves just the same.