How are you??

A common question, we ask it a hundred times a week, we get asked it back a hundred times in return.  Most of us don't think much about the reply, "good, you?" "fine, thanks", answers like these are all answers that just seem to roll of our tongues.  However, you ask someone who has a Chiari Malformation about how they are you're likely to get one of two answers....a candy coated fib "I'm doing ok, thanks" or something a little more truthful like "completely shitty, but thanks for asking." To a Chiarian, asking "how are you?" is like opening up a can of worms in the nest of brand new baby birds and their mamma....it's going to be messy.

So many people want to know what it's like to be a Chiarian.  Well, to be frank, it sucks major ass. While eventually you find yourself in contact with fellow Chiarian's who can understand what you are going through, it in no way puts you in some fancy-shmancy exclusive club.  It just helps you find more support and relate to others like you. But even with those people you still feel completely alone with this horrible, God-awful illness that is absolutely invisible to the rest of the world except of course for the enormous scar that looks like a zipper that runs from the middle of your skull to the base of your neck and then some.  People look at you as if you are lazy.  Doctors call you "crazy" tell you it's all in your head, until of course they actually take a closer look and physically see that yes, it is in your head, except all the parts that should be in your head, are not.  That's the problem.  It's an illness that is both debilitating, frustrating, and can be fatal.  Yet to some, it is easy to look the other way because those who suffer must be faking because we don't "look sick."

There are so many horrible diseases out there, not one is any better than the other.  They all suck.  I wouldn't wish any of them on my worst enemy.  Some of them your body tries to fend off with white blood cells or your immune system will attempt to kick in, in some way.  With Chiari you are literally fighting a war against your own body, against your brain, the very thing that controls your body functions.  It literally seems impossible to win.  Every time a new symptom comes up you wonder will this be the one that will lead to something I cannot beat?  Will this be the one that kills me?  I cannot tell you how many purple candles I've seen go up, how many angels gained their wings, some too little, too young, that should never have had to deal with this sort of thing ever, but especially not this young.  This disease, much like all the rest, just sucks.  Did I mention that?

As a Chiarian, especially as a woman, I worry that I've passed this ridiculous disease onto my children.  I pray every single night that I did not pass this onto my babies.  I will take everything this horrible disease has to offer, everything every horrible disease has to offer as long as my children do not have to suffer one moment of any of this nonsense.  It's one thing to know that you have to undergo these surgeries, that your doctors will literally be poking around in your brain multiple times in your life, that other parts of your body will be affected by this damn disease, that you could develop other diseases thanks to this one.  The last thing you ever want is to think your children would ever have to face the same thing.

It's bad enough that thanks to this suck-ass disease you no longer can play like you used to, you have no energy, your body, no matter what it's age is actually acting more like someone 20-30 yrs older than you.  Your memory sucks, your attitude sucks and of course your "get up and go" is now "get up and sit."  Having children young was our plan so we could grow up with them...be able to play with them, run with them, go on vacations and act like children right along side them.  Thank you Chiari for ruining that plan.  To see the look on my children's faces when they ask me to play and I physically can't move because  my migraine is so bad, or because the pressure in my back/neck is just too much, or because my tailbone popped back out of place, they don't need excuses...they need their mom back.  I need my body back.  Doing the surgeries didn't give me symptom relief, just made new ones and now I'm facing more....and I just can't do that again.  I just want to be with my children.

So, how am I?  I suck.  Chiari sucks,  I am not lazy, my house is cluttered with toys but it's clean. I am not crazy and I am "sick in the head" my brain is "leaking" out of my skull.  I don't feel good, but I'm not contagious.  I'm not in shape, but I can't work out, I will literally break my ass.  So to judge me just sucks.  Walk around in my shoes for a while and then pass judgement.

So to sum up, I really had two reasons for writing this blog.  One, I just needed an outlet.  Some of it may seem a bit sappy or whiny and for that well I'm sorry.  Actually, I'm not because I don't ever talk about this with anyone and this is my outlet so I'm sorry I'm not sorry.  I'm having a bad night and had no one to talk to.  So if you're reading this, you're now my therapist.  Congratulations and I'm not paying you.

The second reason was because I would really love it if the next time you see someone who is walking around with purple hair, dressed in nothing but comfortable clothes, talking to you about how they aren't feeling well, or the next time you see someone park in a handicapped parking spot (as long as they have a sticker) and they may look young or may look like nothing is wrong with them...give them the benefit of the doubt.  You don't know what someone else is going through, what they may be struggling with or what disease or illness they may or may not have. Perhaps they are showing support for someone else.... Instead of judging, maybe ask them if you can help them.  You wouldn't believe how much a simple smile or nice gesture can make someone's day instead of a snicker or snarky attitude.  I am guilty of it myself....I've judged others in the past as well...but now I simply ask "how are you?"