Joking about how I don’t remember the month of March or that I have missing pieces. Now laughing that I’m finally living the Hollywood dream of Botox is my way of making a really shitty circumstance seem pale in comparison to what the last year and half really was.
I have only shared the story of my brain surgery once and I kept it simple. I shared mostly how I wish people would have reacted rather than what actually happened and subsequently how my life was radically altered.
In July of 2012 I was angry. Pissed off and bitter I made sure to let everyone know that I could not believe that God was doing this to me. I acted as if I was this prized, golden and faithful child of His that surely should have streams of gold laid before her rather than her health ripped apart. I was angry yes, but deep I didn’t ever think I would be ready to talk about it outside the comfort of my laughable defenses. down there was that deep seated fear that God was mad at me for not living up to His expectations and this was my punishment.
I felt like Job.
In October of 2012 I was diagnosed with Chiari Malformation, a brain disease in which ones cerebral tonsils are forced through the brain stem and into the cervical canal because the skull is to small. The area becomes compacted, cutting off the flow of cerebral spinal fluid causing neurological symptoms such as unsteady gait, loss of motor skills, speech and memory difficulties. The most common symptoms of Chiari are debilitating headaches and neck pain. My symptoms started backwards. I started with the neurological then once diagnosed the extreme headaches hit almost immediately.
My first visit with the neurosurgeon through Kaiser was a disaster. He saw me all of 12 minutes, had not even looked at my MRI or chart before seeing me then proceeded to say he didn’t think I had Chiari but that he would do the surgery anyways if it would make me feel better.
Through a series of unfortunate events I was taken out of his care and moved to another doctor and hospital completely, thank God. As angry as I was at the time I can look back now and see how it really was God that moved on my behalf even though I was so bitter about having to start the process over, with more MRI’s and a new doctor and different tests.
This whole time Abigail was home with me because before I started to get super sick I had made the choice to home school her. The worse my health got made having her home increasingly difficult. By the time Thanksgiving rolled around I was bedridden and taking pain medicine more often than I was up and about.
The same time I was fighting this physical battle I was fighting a spiritual one as well. I was desperately trying to cling onto these rigid, legalistic ways that had kept me safe for so long all the while God was gently working the clay of my heart into a softer, more gentle and “notsomanyrules” bound follower of Christ.
I wanted nothing to do with it.
He wasn’t only using my time in bed He was also using my work in therapy which just happened to become more intense at the same time. It was like getting hit on all sides by these waves that felt 10 feet high and nothing I grasped onto was able to pull me high enough to get my head above them.
So I choked on the saltwater of my health, faith and my parenting until I couldn’t do that anymore and I lay in a heap on my kitchen floor, sobbing, screaming profanities and gave up.
I just couldn’t keep up anymore, with anything. It was December by this point and I knew that in the new year I would be having surgery and that having Abigail home would make recovery difficult. So I made the choice to put her back in school. It felt like a death to me to make that choice, mostly because of all the criticizers I had towards homeschooling her. It wasn’t about them though. It was about us and what was best.
I was still walking forward in my work in therapy, showing up, working hard and not backing down. Honestly as hard as it was to do really tough trauma work while that sick I don’t regret it because had I not I believe that my progress would have become stagnant by the surgery and recovery period.
I met with my neurosurgeon on February 13, 2013 and right away we made the decision to go forward with surgery. He said in my case was is the best option and since my Chiari was progressing there weren’t many other options. Though Chiari is very grey and rare and often asymptomatic in my case the symptoms were causing so many problems it needed to rectified surgically. I was lucky enough to get a surgery date for the very next week.
As happy as I was to know that the next Thursday, February 21, 2013 it was going to be over, but then the panic set it. Throughout the whole ordeal I had been alone. Meaning I had been taking care of myself. I did not (still don’t) have a very big network of people in the flesh to walk beside me and help out. The people that were my community proved to be unreliable. It was a stinging reminder of the neglect and abandonment that I experienced as a child.
I in fact had to set extremely strict boundaries with them when I was having surgery and coming home because they were attempting to take over, make my choices for me and make my illness about them. It felt like a slap to the face when people would ask what they could do and then not follow through. Or ask and then back out. When I went into the hospital for surgery I still had no idea who was going to be with me at home, who was going to help me with Abigail and I was told that I just needed to be ok with that.
I would say that in a normal circumstance with someone who is used to things working out that, that statement might not have freaked them out. However I needed to know. I feared coming home after brain surgery and having to take care of Abigail alone; which I didn’t but the all encompassing fear was there.
The five months leading up to surgery felt like a tug from God and a push away from people. I sat alone in the midst of wondering why this was happening and hearing people say “Just trust God” and “He’s going to do something SO BIG with this” Instead of having those that for so long stated they cared and loved me deeply, rally around me.
The trite, overly spiritual sentiments about God, who He was in the midst of my struggle (which was apparently known to everyone but me), were infuriating. I didn’t want to know what they thought God was going to do, I didn’t want to ask for help only to be turned down repeatedly, bailed out on or controlled. I wanted someone to sit next to me in bed, to weep with me or to offer to have Abigail come over so I could rest and she could play and not be bored.
I went into surgery elated. I was ready to get this thing done and over with. I was ready to move on, heal and start my life over. Pain had been constant for so long I wanted to know what a pain free life was like.
I came out of surgery in pain (obviously, I’d just had my skull opened) vomiting and asking for my phone.
My hospital stay is a blur (hello Morphine, Oxycodone and Valium)
I did witness some incredible acts of Jesus with skin on which is why I said earlier that I do stand by believing God meant for me to be moved to a different doctor and a different hospital. The whole staff was so kind and gentle.
The nurses sat with me as I vomited from the surgery. There was a CNA who took such good care of me. She showered me when I couldn’t even lift my arms but needed so badly to be clean. They answered my questions, made sure I had my meds, if they saw me looking uncomfortable while I slept they would reposition me or tell me to push the magic button (the morphine button)
Jesus showed Himself in the still whispers while I was in the hospital and in those burning bushes that I’ve often asked for. At the time I know I couldn’t see it. It took what was about to happen in the coming months to be able to realize just how present He was.
I carried and still do carry hurt over being afflicted with this “thing” I couldn’t have escaped because it’s congenital and sooner or later it would have reared its head. As much as I wish that I could go back and wipe it all away and relive the last year and a half differently I really don’t believe I would.
I think my anger comes from feeling like I had my shit together before this happened. I had a good job, was making good money and didn’t need to ask for help so much. My relationship with God was “awesome” and I was going about my good Christian girl ways. On the outside everything looked great. Especially to those who wanted me to be a particular brand of Christian. Internally there was so much chaos that I was working so hard to keep shelved, organized and pushed down. Every time I spoke a word about God or His faithfulness it felt fake as it escaped my lips.
When I got home from Africa the end of June of 2012 and everything in my life started to fall apart that chaos started to seep out. For appearance sake I did my best to stuff it down yet when life hit another brick wall those pretenses dropped and shit became real.
I had to say something to God that I never felt like I could say before.
I never knew He could handle my “whys”
I had always been taught that questioning God or being angry at Him is sinful because “who are we to question the Great and Mighty God?”
As if He was more like the wizard in The Wizard of Oz; a fake little man, hiding behind a curtain.
He’s not. He is the God of the universe and He can handle anything we say to Him, our temper tantrums and the extreme emotions that come when faced with tragedy.
I sat with the profanity I shouted at Him daily with fists raised, the flared temper and the “I really don’t like you and your ways right now but I’ll be back tomorrow”
I did not have a foundational relationship that was built on seeking my own truth about God. Rather I took in what everyone around me told me about God, what they told me to believe and because I was so afraid of going back to who I was before I accepted their notions and beliefs.
I had such rigorous standards for myself and a “law book” of sorts that I kept for myself because that is what I thought I needed to be deemed worthy to God. When the wrecking ball came and shattered life as I knew it I could not keep up with myself imposed rules. Therefore my relationship with God felt distant and stagnant and then came the anger.
I desperately needed to be filled with a fresh faith; new and alive; a life giving breath from God that was my own.
There is a line in a song by Mumford and Sons and all it says is
“And I was told by Jesus all will be well. So all must be well”
I was tired of listening to other people tell me that “all would be well” I was hungry for Jesus to tell me, directly to my face that indeed with Him, his way that we would work this out.
It wasn’t well for a long time. As I sit here and write this, the night before the one year anniversary of my surgery, things are still not well. Externally and circumstantially one would say they are worse. But internally and in my faith they are better.
I have a fluid faith, a day by day faith where I know that regardless of what I go through God is with me. Daily I am trusting that He can handle me and that I am not too much for Him. I burned that law book and started going outside the box of rule bound, legalistic one way only religion.
I have Hope and Faith and Love.