Isn't there a little Joker in all of us?

If you've followed my experiences on social media up till now, you've only seen what I wanted you to see. It's what we all do. Post the pictures where we look the most put together, the happiest. I came by it honestly, my mom would refuse to smile for that polaroid camera if she had rollers in her hair, bathrobe on and no make up. The I just woke up leave me alone face. I may or may not have snuck a couple of photos of her anyway. She can't ground me now. I'm sure my daughter has a stash of hidden videos and photos that she's snuck of me. I can't ground her now either! We're trapped in a world that is captivated by or rather, obsessed with perfection. What's considered beautiful or fashionable is in next months magazine or Instagram filtered photos. None of it's real. I loved the most recent post of Jennifer Aniston showing what she looked like before the cameras turned on. It was a tiny glimpse of reality and I loved it. But nothing I've watched portrayed today's society better than Joker. Joaquin Phoenix blew my mind. He embodied Arthur in a way I never thought possible. His reality is terrifying, unpredictable and honestly one of the most powerful things I've ever witnessed. All that raw, vulnerable, ugliness poured out before my eyes for complete judgement. I couldn't look away even if I wanted to. For the first time I felt there was something out there that really got it right. Not in the comic book correctness kind of way but the human way. The real truth of living in an ugly world and trying to pretend it's beautiful. The absolute magnificent feeling of looking around and finally seeing a world that you relate to. To be accepted for all your flaws, deviant behavior and warped personality.
I can't think of anything more beautiful than that.

So what didn't I show you? The part I was taught noone wanted to see or even worse, would make them reject me. It would take a book to explain all of it but for the purpose of this post I'll share a few things. The first memory that comes to mind is the moment I realized that Hydrocephalus was going to be the death of me. Quite literally. I was sitting in the passenger seat and my head suddenly felt like it was going to roll off my shoulders. Like a bobble head figurine of some sort. I had never experienced anything like it before or since. When I went to say something about it I couldn't speak. I knew what I wanted to say but I couldn't get my vocal cords to utter a word. No sound came out. I was for lack of better explanation, mute. There are no photos to reflect the utter terror I felt in that moment. Breathing soon became difficult as well. I remember trying to analyze myself, is this a panic attack? An allergic reaction to something? What is happening to me? The person driving made the executive decision to take me to the ER. Imagine that missed photo opportunity!? Watching the
DRs face as they come in after reviewing one of my CT scans has become an inside joke in my family. It's always the same. They come in looking skeptical of any real emergency, order CTs and afterwards come in with a whole different demeanor. This night in particular, it went the same but they added that I needed to go to Utah immediately. That was a plot twist I didn't see coming.

Hydrocelphalus...what's the big deal?

If you're like me, you hear the word Hydrocephalus for the first time and don't think much of it. 
It sounds like a pretty innocus thing doesn't it? I often wonder how many people are walking around
right now that have no idea they have it. That headache that is eased with medication. The blurry
vision that seems to improve with glasses. Looking back, I can remember those things. Chalking it up to 
too much time at the computer, working too many hours or too much stress. Not that those things weren't
fairly accurate. Like most things, if we aren't affected by it or know someone that is we will most likely 
hear the word Hydrocephalus and brush it off. I know I did. The first time I heard the word, before it wreaked 
havoc in my life, I was in my early 30s. I couldn't get my headaches under control and went to a Neurologist with
my mom. The Dr came in after reviewing my scans and mentioned Hydro something then carried on to say it was most likely a result of a deformity from Fetal Alcohol Syndrome. I remember looking at my mom and wondering what she was thinking. She sat silent. The Dr recommended shots in my neck to ease muscle tension once a week and we proceeded from there. I completed the treatment, the Dr moved out of the area and I never thought twice about that appointment. How I wish I'd asked more questions then. I would have been more prepared for where I'd find myself a decade later. I could have had more in depth and honest conversations with my mom. But I chose not to. I was busy. I had two kids, a stressful job, a failing marriage. I didn't have time to think about things that had no bearing on my life. Or so I thought. 
What I would tell someone hearing that word for the first time now is this; Hydrocephalus can not be cured. It means that the cerebral fluid is not properly draining from your brain and is causing the ventricles to expand. If left untreated it is fatal. There are several different types, causes and outcomes. There are two surgeries currently available to manage the continual build up of Cererbral Spinal Fluid in the brain. One is a shunt and the other, which I was fortunate to have, is an ETV (Endoscopic Third Ventriculostomy). Neither surgery is without risk, complications and potential life long side effects. But hey, it's better than the alternative.  As my dad would say,
"Every day on this side of the grass is a good day!"

Introducing...my rebel brain

Photo Credit:Brian Smyer

In the past, I approached each challenge with a furious optimism that I would be able to overcome it.  A certain arrogance that I was strong enough to outwit any obstacle that was thrown at me.I look back at my 41 year-old self and would love to pat her on the head and laugh. If only I'd known what was going to come my way. Maybe it's a good thing that I didn't. I'm not sure who would willingly sign up for this. Which reminds me of a conversation with someone who believes that before we're brought into the physical world we volunteer and sign a contract for the struggles we will face in our lives. If that's true, I have some serious questions for my spirit and the contract holder. I mean, come on. What was I thinking?
Seriously though, I've learned more about the human brain in the last 7 years than anyone without a medical degree should ever want to know. It's been quite the emotional rollercoaster.
 I was diagnosed in 2012 with Hydrocephalus after waking up one day unable to walk or put a sentence together. I'd had some hints that something wasn't right for months leading up to this but as is typical for most, I just powered through. Took the anti-anxiety meds for the unbearable anxiety stalking me, the blood pressure meds for an unexplained spike of my blood pressure, and ibuprofen for a headache that I just couldn't shake. It was the beginning of a journey that I never imagined. After a 4 day stint in the hospital with a diagnosis of Hydrocephalus, it was a whirlwind of CTs, MRIs, Occupational and Speech Therapy, applying for short term disability, informing my job that I may not return and adjusting to a life I didn't fully comprehend. Everything was exhausting. The basic daily things were difficult, if not impossible. And the pain...the most incredible vice grip pain in my head that never relented. As things progressed, the pain was accompanied by sharp stabbing pains through my brain that would bring me to my knees. I lived with no further answers and slowly deteriorated over the next year, eventually becoming bed bound and being pushed in a wheelchair for doctors appointments or the few social events I attended. My short-term disability became long term. I signed POA to others as I was no longer able to think clearly or make my own decisions. I was facing my demise and no longer had enough energy to even grasp the magnitude of it.