My friend Kelly was diagnosed with Arnold Chiari Brain Malformation and is scheduled for surgery May 19.
So she started a tumblr (of course, right?).
She’s one of my best friends from college and there is no doubt she’s got this. She is one of the most spirited people I know and I look forward to her tumblr posts.
So. I’m new to this blogging deal. Started and stopped this thing at least three times. Here’s the deal: I’ve got issues. I’ve also been blessed with many many people in my life who want to know what is going on with said issues. I get tired of telling the same story over and over. Plus, I just don’t like talking about it, so this is an easier way of letting lots of people know without having to spend hours talking about it. Win.
First, some background… it started with a headache. A simple headache. Not that unusual, but it was for me because I didn’t get headaches very often. The headache came and went and eventually just came and never went. Other symptoms accompanied the headaches…balance issues, nausea, extreme fatigue. Fun, right? I had to listen to people tell me I just needed to “relax.” Super irritating. Especially when I knew something was wrong. We just needed to figure out what exactly that was. This went on for almost two years and then in January we finally got a diagnosis. My initial reaction was relief. Finally we knew what was wrong with me and it wasn’t just stress. I wanted to call all those people who told me to relax and tell them to SUCK IT. For a while I was really afraid that I might be losing my mind. Like for real losing my mind. It was a relief to know that wasn’t the case. I have something called Arnold Chiari Brain Malformation. Basically my brain is too big for my skull and is pushing out the back of my head. You can google it for a more scientific explanation if you’d like. Jim was incredulous with this because he’s teased me our whole relationship about my enormous head and now we discovered that it’s still NOT BIG ENOUGH. Now for the flip side. The only cure is surgery. As in brain surgery.
This is usually where I tell people to take a deep breath and repeat my mantra: It’s not cancer and it’s not terminal. If I choose not to get the surgery, I’d be fine. I’d have headaches and be miserable for the rest of my life, but I’d be alive. As it stands, we’re not willing to do that. I have the surgery scheduled for next month. May 19th.
I live an incredible blessed life. Normally I get suspicious when people feel as if they need to brag about their lives. I feel like they need to prove something to the rest of us, but I will make an exception just this once. I have a major kick-ass husband. He’s ambitious and fun and he gets me. We have a great relationship. Not perfect, but I wouldn’t have it any other way. I’ve got three awesome kids. Smart as whips, cute, athletic and they make me laugh. Scream and yell, also…but hey, can’t have it all. I’ve got friends. Holy Cow, do I have friends. All over the world I have friends. So yes. It sucks, but it’s life. I like to think the Universe is fair. I lucked out pretty good in the husband,kid and friend categories (see above), so fine. I’ll take one for the team.
A couple things you can do for me. Don’t tell me you’re sorry. If you do, I will unfriend you on Facebook and the next time I see you I will pretend I don’t know you. Don’t give me the cliche’s “God doesn’t give you more than you can handle” crap. Puhleez. Tell that to someone who’s just lost their family, they won’t believe you either. Instead tell me that I got this. Here’s the thing with me. Pity and sympathy make me really uncomfortable. I’m much better with strength. And humor. And denial. I’m awesome with denial. Tell me I’ll be fine. Make me believe it. Tell me my kids will be ok. That my family will go back to being blessedly normal again. That I’ll be able to drink again. Did I mention that I can’t drink right now? Totally sucks. I’ll get the damn surgery just to have a beer during homework time again. Tell me to take a deep breath. Then give me a hug.
I’ll write more regularly to keep everyone updated. It’s therapeutic for me also now that I’ve finally started. So there it is. Crazy, right?