Yesterday, Bryon, ever-loving-doll that he is, suggested that I don’t shit-pot stir, and just save what I had to say for myself. He’s not wrong. He never is. Damn that boy’s eyes. But, I obviously posted it anyway, and he came, instantly, around to my side of the fence. Not because I smacked him around a little, but because I explained the following, and he’s an incredibly supportive dude. If you don’t have a partner like this, get you one. They’re fabulous to have around.
I’ve said this before. I started this because I’m sick. Being sick takes a toll. It wrecks you. It tears apart who you are inside and it makes you re-evaluate who you thought you were. It puts all the pieces on the table, and it makes you wonder if they were all from the same puzzle, or if maybe your kid dumped all the puzzles you own together, and you have a lot of sorting to do. It means that you do a lot of self-evaluation. When, shitty things happen, like being dropped by a friend because they’re a rotten person, for example, you don’t bounce back like you used to anymore. Life has a different meaning because, well, you almost didn’t have one.
My life has slowed down immensely. Instead of the standard daily grind of up, gym, shower, dressed, rush out to work, school, back home to prep dinner, and then repeat; I have the luxury of choosing when to rest my body, for as long as I need to. If I’m having a bad pain day, week or month, I can stay in my pajamas. I have to live this way now. Maybe for a while. Maybe forever. Maybe not. I don’t know. The certainty of uncertainty surrounding one’s health and wellness is another thing that takes a toll. I don’t know if I’ll wake up tomorrow well enough to do what’s on my calendar for the day, every day, any day; but still, I plan. No one knows what the future holds, but I know that mine is like an anvil, waiting to drop. Any day is the day I can be crippled by a Chiari headache. And, any day is the day that my surgery may fail.
Alas, I have a lot of time for contemplation and deep reflection. I have energy to spend on weighing issues that are bothering me, and why. I have time to, literally, just sit with my own mind. I wanted to share that side of being sick with the world. Not just the “this is what a headache” feels like side. Or, how many appointments there are, doctor’s visits, and the technical side of Chiari. There is a lot to Chiari that I’d hope to educate people on. But I want to share “life” with Chiari, or chronic illness, in general. I want to share my life.
When something is bothering me for so long, and so deeply that it’s not allowing me to write about anything else, it’s time to get it out there and over with, right? I’d even stopped journaling, and writing commissioned work because I just couldn’t get past it. I didn’t even want to think about it. Of course, the point stands, that I didn’t have to push the “publish” button, obviously. So, why take that step?
For that I have two reasons. Firstly, it’s disingenuous to say that I share this process, and then skip pushing publish on what’s been holding me back for over a month. I realize that I’m writing in a vacuum, where barely anyone is reading what I’m saying. But, I’m reading. And, that’s important, if nothing else. Secondly, finding that journal, and seeing those pages made me both devastated for the little girl I was, and exuberant, at the same time. It confirmed who I am because it confirmed what I remember to be true.
So, pushing the publish button was a way for that little girl to say to the world, “see, I’m not crazy, they’re crazy.” The world can be just me, myself and I for all I care; but, when you say something aloud, it becomes real in a different way. It was a very real way of acknowledging, for the little girl, who’s been treated like an enemy of the state her whole life, especially when she dares to stand up for herself, that she’s not been imagining things. It was important to establish that I shouldn’t doubt myself, especially in the very foundations of what made me who I am. In my ever-weakening short-term memory, this felt so important to me. It was important, to me, in this situation, that I plant my flag.
Half the reason I got hit as much as I did, or got as much shit as I did, when I was a little girl, was because I refused to roll over and take it. I stood my ground. I stood up, over and over again, and said, “no.” I refused to be bullied. I refused to apologize for things I wasn’t sorry for. I refused to be told that I was the worst thing that ever happened to anyone, which I was told on more than one occasion. And then, I got the fuck out of there. So now, I’m standing up again. I’m not as weak as anyone thinks I’ve become. Age and illness may have softened me. Time may have made me a grown-up. But, I’m still the same little girl who refuses to be pushed around. I’m now a grown woman who knows what’s right.
Part of being sick is learning what things you can and can’t change; but also learning how to live with them. I can’t change my skull. I can’t change my headaches. I can’t change the situation into which I was born. But, I can adjust how I accept and deal with these things to best affect change to lead to my best life. Now, having put the worst behind me, I feel ready to charge forward and deal with regular bits of life, and the day-to-day struggles of chronic illness, life with a busy military spouse, an autistic kiddo, and just life in general. Writing that last entry, and pushing publish was like lifting a ton of bricks off my chest, I suddenly feel ready to write, write and write, to talk about a thousand things that were behind that log jam. I am ready to face a new world, now.
And that’s why I did it. Phew!
Onto bigger and better things! Life goes on. Today, we’re off to be terrible parents by watching the best Christmas movie ever with my family: Die Hard. Violence, bad language, what could go wrong?
Not 100% sure, but I think this is sub-titled in Dutch, which is crazy-perfect considering the Dutch heritage presentation timing, right?
You’d be surprised how many people (most recently, the devout Evangelical Christians we just befriended), when we introduce ourselves say, “like in Die Hard!” So, I guess it’s time to introduce our impressionable child to the other parts of the clan McClean. He did his heritage presentation this week at school, in which he presented all about the seat of our clan in Scotland, and about mommy’s side in the Netherlands and Sinterklaas.
But, it’s way more fun to teach him to yell Yipee-kayy-yaay Mother-Fucker!...in an “age appropriate way.” He almost, accidentally, said “ass” yesterday, and I swear, he almost self-reported himself to The Pope, and he’s not even Catholic; so, I’m not even the slightest bit worried.