Friday, September 20, 2013

Speaking Out About Chiari Awareness

I'm having a rough time of it.
I'm not going to lie.
And I'm sick, sick, sick of putting on my game face.
I'm tired of smiling when I don't want to.
I'm tired of saying I feel great when I don't.
And I'm uber tired of people that don't get it.
How did I get this way?
Let me count the ways.

So, I'm working 12 hour shifts at work on a busy, busy, busy unit.
My feet hit the door of the hospital and I don't stop until I walk out 12, 13 or 14 hours later.
No breaks..and maybe, if the planets are aligned and all is right with the world, I get to eat lunch.
That's nursing, folks..nursing with all the glitz and glam.
I'd like to say, "That's why they pay us the big bucks.".. But I'd have to say that with the fake smile I'm tired of  wearing..
All of you nurses get the humor in THAT statement.

It's not that I don't like my job.  I do like it. I like the people I work with and I actually like being busy as hell.
So what's my point?
My point is:  My body doesn't like it.
I get home, where dinner is usually waiting on the table for me..scarf it down..walk to my room, shower, sit on the bed and the next thing I know the alarm is going off and it's time to do it again.
I realize this is regular for every nurse, and I'm not saying I'm being treated unfairly. I knew this would be my life when I took on these 12's.
The problem is, my brain is rebelling.
Sometimes I think I audibly hear it laughing in the back ground, scoffing at my plans.
And sometimes, it's more than I can bare.
Sometimes, I give in..and spend my days off in a dark room, racked with sobs and dismay.
Other times I just file away the symptoms that are thrown at me (blurred vision, hearing loss, headaches, random numbness, tinnitus, etc) and don't focus on them.
Then, the next thing I know, I'm in the shower and my hand goes I crumple to the shower floor and cry. Then I realize I can't hear the water hitting the floor of the shower, so I cry harder..and I can't find a towel because my vision is blurred, I stifle the sobs and grope blindly for  a towel.  I calm myself down, wash my face and emerge from the bathroom shaky and exhausted.
My sweet husband typically looks at me at these times and says, "you don't feel good do you?"
Nine times out of ten--I look him straight in the eyes and I do what all Chiarians do..
I lie.
"No, I'm fine, I'm just a little tired"
He doesn't buy it, but goes along with it....and I love him for that.

 Am I looking for sympathy?
No Way!
I'm verbalizing what many Chiarians deal with every day.
This is our life..we all choose how we cope (or don't cope).
Our disorder doesn't define us, but it does control and effect us continually.

Last weekend, I was feeling particularly over-stressed and under the weather.
I worked several extra shifts, had lots of school work, and I had not spent even a few minutes on my personal business..PLUS--I've had no time to write..and writing keeps me grounded.
Anyway, Bob surprises me with last-minute tickets to a Ball, which, meant I HAD to go find something to wear. He shopped with me, we found my outfit..and stopped off for lunch at one of our favorite places, B. J.'s Brewhouse.

Bob and I at Freedom Ball 2013 at Downtown 301, Waco, TX

So we are there, feasting on Ahi Tuna (I'm a fish-a-holic) and a few seats down from us a guy sits  down.  I glance at him, like one normally glances at someone they don't know and I had to do a double-take...there on the back of his head, emerging from his cap was a well-healed, yet very prominent ZIPPER.

I mulled over the situation for 10 or 15 minutes..then finally approached him and asked the question:
"Would you mind telling me about your scar?"
He did.
And I was, in a word... Delighted.
Not that he said anything I didn't know.
But here he was, looking like a tough guy, shaved head, cap, watching football..and he spilled his guts to me about his Chiari experience since the mid-80's.
Now permanently disabled by it (because of his frequent vertigo and diminished critical thinking skills)--He said so many things that made me feel, at least for a little while...NORMAL.

Bob and I sat there and talked with him, heard his struggle and co-commiserated with  many points.

He said he was "done" with people that don't get it.
So called "friends" that say things like, "but you look okay" or "you don't seem sick".
He said he "cut them all loose".
Or "friends" that disappeared during his surgeries to only resurface later.
He said, "I'm not bitter about it...I just can't go there, real friends will be there no matter what-and through this, I found out I don't have many".
I told him I had similar experiences and felt very isolated.
I know my friend Katrina feels the same.
It's hard and it's lonely.
And it doesn't stop.

We exchanged phone numbers and have even exchanged a few texts since.  We are hoping to meet for dinner sometime soon and I really need that.
I need someone to walk through this with me..and not someone I want to lie to because I want so badly to feel good for them.
I despise the look on people's faces when I tell them I'm having symptoms again.
I despise it when  people say, "but you had surgery to fix it right?"
I despise it when I have to explain why surgery is not a cure.
But I despise it even more when I'm left to my own devices, when no one asks and when I realize that in reality, no one really cares.

Am I wallowing in self-pity?
At the same time, this is Chiari Awareness Month..
Maybe the truth is....I just want others to be aware.
If you are a family member or friend of a Chiarian..give them a platform to talk about how they feel.
If not..and you found this randomly..go find a Chiari won't have to look far..there are more of us than you think.
And if you happen to be in that population of friends that dropped off the planet when your friend started dealing with this enemy we call Chiari-
-Shame on you!
You have no idea how you may have hurt them by your neglect.

September is Chiari Awareness Month....Forward my blog.....create awareness.....donate to a Chiari association or help a Chiarian with their financial needs...Just do something.
Little things mean a lot.

Thanks to Chris Prevatt for sharing his story with me...and to Katrina Powell for being honest about her isolation since surgery (and to Misty for being her steadfast friend).

And to the handful of people that have emailed, text, or FB'd me because I haven't posted in awhile-Thank you for your concern.  Just know I'm doing all I can to beat Chiari every day. Your support means so much.

1 comment:

  1. Thanks for this post! I've been working on my latest post about how good I've gotten at lying about how I feel so I'll be linking to your blog so that people that read mine can see what Chiari makes us do. How great it is that you found a local Chiarian, I would love to find someone local just to talk with someone that understands what this journey is like. Stay strong and keep on writing, believe it or not your blog has a great impact on other Chiarians!