When I stay far away from a mirror, I can pretend that I am a bad ass. Oh stop it. Mom’s CAN be bad ass too, ya know. Think of the quietly aware Angelina Jolie as Laura Croft, ‘Tomb Raider’ mode, only with this mom, sporting somewhat untamed red curls, decked out in an old tank-style Tee, ripped jeans, and an old pair of black combat boots, my favorite uniform of choice. Well that, or maybe swap in a pair of red converse. Yeah, I know, way less kick ass, but I adore these beat up old red kicks, so bear with me here. I can kick the world’s ass in any pair of footwear I choose, trust me.
Lately, however, I have been sporting far less of my kick-ass self and far more of my withdrawn and pathetic sister-self. I really loathe this in ways I can’t even begin to put into words.
I’ve been faking it, playing a role, stepping into and out of it like an actress on a movie set. I am so all about “ditching the masks” but I never want to admit the final truth that lay behind this one mask I often refuse to admit I wear… The “health” mask. I hide behind this one. I hate anyone knowing my truths here and the reality on this one.
I feel so “less than” when I am forced to reveal this and abide by the restrictions that come with it. I know my family loves good ole, “Chiari Christi,” but I loathe her. I don’t like anything about her. She annoys me and sounds whiny in my head. Who would want to be around me if I was always being truthful about the question, “How are you?”
There are very few people in my life I will look in the eye and tell them the truth. THAT is the real truth right there. Why? Because I fear letting anyone know this side of me. Because I am sure they will turn and run the other way. Because I am sure they will say to themselves, “I just walked into a hot mess.”
My reality IS a hot mess. Chiari Malformation is a hot mess. Period. What is Chiari Malformation you ask? If you are new to it, the layman’s terms (very non technical) is that my brain is simply too large to fit into my skull. My skull is too small.
What happens when your brain is too big for the container provided to keep it in? Bad stuff, that’s what.
It then herniates (or squishes down into) the brain stem where all the nerves run from your brain into your spine; so that you can do lots of messaging work in the rest of your body. Squishing brain matter into a space specifically designated to do some demanding networking work, things get mucked up.
It can cause many different things for many different people, and no two Chiari patients are the same. Why? Because we are talking about squishing a brain and it’s networking system of nerves and signal translators. No two brains squish the same two nerves the same way. It makes it hard for anyone to really understand, and why it goes undiagnosed for so long for most of us. (More info read over @ http://en.wikipedia.org/wiki/Arnold–Chiari_malformation )
I wasn’t diagnosed until 4 years ago now. The fact is that I was born with it and had constant issues with it much of my life. We never had a clue and for me, it wasn’t life threatening, so it was okay that it wasn’t diagnosed. Right now I am waking up each morning on at a 7 on a 10 pt scale. My pain is so high I am beside myself most days. It makes me irritable and grumpy. If I didn’t wear a mask, even my family would disown me. I had so much I wanted to do this summer and I am now just mad, constantly, about the damper this puts on my plans.
My goal, recently, was to just make it through the rest of the school year, to go on that one last school field trip and make it appear I somehow was loving every second of the day with my son,. I wanted to laugh with him, to help him shake the stoic seriousness he seems to wear as his mask at school, and to have him cut loose and have fun. Only then I would gratefully return home to collapse.
(When no one was watching, I did exactly that.)
Still, I had one last goal. I HAD to make it to my writer’s conference. It was scheduled for the last day of school and that weekend. If I could hold my act together for just one more round… one last performance, then I could come home and just let it all go. I didn’t really know what I’d do then, exactly, but at least I would get to go and then I’d figure it all out.
When the Chiari calms down, and it doesn’t decide to add extra stress to my life, I feel so normal. It’s easy to forget this even exists. It feels like a bad dream. When it flares up, I am hit with 2 tons of bricks swinging directly at me. There is no way to duck. I just have to face the full brunt of it head on.
It’s been harder this time around to really dig in my heels and do what my Dad taught me. Yesterday was Father’s Day and I really thought of him a lot. My dad has known pain, a LOT of pain, and most of it is chronic and can’t be “fixed,” meaning no cure. He’s been though numerous surgeries to combat pain and to try to make it better, but he will never, EVER, be without pain. I have a whole family, honestly, who had chronic pain issues stemming from an assortment of this and that, none of which are Chiari, but who all have shown me that pain is not something that stops you, but that is an obstacle to simply be overcome.
My dad talked me down off a hypothetical cliff one day in the midst of one of the biggest pain days, and one in which I was scared out of my mind as they discussed brain surgery with me. The surgery would “relieve” some pressure and symptoms, maybe some pain, but it would not cure this. Not ever. So at that point I had to decide to keep running from the pain and loathing it, or turn and embrace it.
My dad told me that sometimes we are not meant to live pain free lives. You have to turn and face the pain head on and not even tackle it… not overcome it. Instead look at it and hold out your arms and embrace it. Each time you feel the pain getting stronger, squeeze tighter, know it as a sign you are alive, and own it as your own.
Like it or not, Chiari makes me who I am. I would not be the woman I am without it. I am forced to do hard things every day of my life. Getting out of bed today, for instance, took a hell of a lot of doing, will, determination, and drive. I can guarantee you I would prefer to still be back there in bed, pretending I was not awake. Sleep never claims me easily and when I wake I am sad. The pain is right there saying, HI!! REMEMBER ME?? and I want to punch it in the face. But I am gonna kill it with kindness and instead just hug the thing to my chest and claim it.
There isn’t much I fear in life, except failure. Once you live with chronic pain your brain says, “seriously? If you can do THAT everyday, then this is a cake walk.” I’ve found that the only way to fail is to never have tried at all. I can’t succeed if I don’t step out the door and try the day. I’ve failed if I don’t get out of bed and I don’t try to meet the day and all it throws my way.
So watch out world, Chiari Christi or not – I still intend to kick some ass out there. I got dreams ya know. I still got things I wanna do. I don’t care how hard you try to knock me flat, I am still gonna stand back up and try twice as hard as I did before. That’s just how I roll. You’ve been warned.