Sunday, April 7, 2013
Chiarian I am...Sleestak I am not!
Remember these guys?
Think about it...
That's right..these are SLEESTAKS.
Sleestaks were the scary creatures on Land of the Lost.
Scary, creepy..and looking back at them now..pretty corny and goofy looking.
I haven't thought about a sleestak in years.
Until last night.
Our friends were over, helping with last minute wedding preparations..and somehow we got on the subject of my blogging.
Our friend Jason said, "Please quit saying "Chiarian--It sounds like some kind of creature".
Of course we laughed.
I protested, "But that's what we are.."
He said, "No- not anymore--you're fixed".
I briefly tried to explain that Chiari isn't cured...and blah blah blah...and he argued.
All in fun..but it's been on my mind ever since.
Using the term "Chiarian" makes it sound like we are cult members (like Branch Davidian --it's okay, I live in Waco..I can use this term).
Are we cult members?
Have we moved into our own subset of society?
We are not worshipping or praising Hans Chiari.
We are merely bonding with others in an effort to get through this with some sort of sanity.
We laugh at our surgical wounds..call them zippers...we call ourselves "Zipperheads"
See..you can be a Chiarian and not a Zipperhead.
Getting the Zipper installed..it's a big deal.
Yes..basically our skull is split open and a glorified seamstress cuts, stitches and glues our dura (covering of the brain), in an effort to return our lives to some sort of normalcy.
We don't get "CURED".
We get better..or most of us do.
Some need more surgeries later, some are symptom free for months or years and then they regress and are back at square one.
And lately, I've learned of four Chiarians that passed away due to "complications of Chiari".
Chiari is a force to be reckoned with.
Being a Chiarian is more real and personal to me than being an American, a native Mississippian, a neo-Texan...or even being a Republican.
I don't mean to sound like a cult member or conjure up images of creatures in the mind of others.
So don't think of us as sleestaks.
Chiarians look as normal as anyone else, which really hinders us in getting treatment.. (like my ex-husband always said, "You don't look sick".)
I've been racking my brain (no pun intended) all morning for another group of patients that label themselves like we do..cancer patients aren't cancerians, Alzheimer's patients aren't Alzheimerian's and people with Lupus aren't Lupusians..the closest I can come is diabetic and that's more of an adjective than a label. This observation by no means minimizes the condition of the people that suffer with these diseases..it's just a point to ponder.
Those of us with Chiari Malformation are unique. We like the label. We like the comaraderie..we need it like we need air. No one else gets it.Without our brothers and sisters of Chiari, we wither into states of depression and despair. No matter how much love and support we have from our friends and family..looking into the eyes of another Chiarian can not be rivaled. There is an indescribable connection..because we know at the core of our being that in that moment we are understood..the person behind those eyes truly "gets it".
In my work as a pediatric nurse, I've been blessed to meet a few Chiari patients. I've walked into rooms of families praying over their child and prayed with them. I've looked into the face of worried moms and crying grandmothers counting the minutes until they send their child into brain surgery because of this strange and unique condition. I've introduced myself..which is always uneventful, but the second I say, "and I have Chiari Malformation Type 1"..the entire tone of the room changes.
I'm no longer a nurse...I'm a friend...I'm family...I, too, become a warrior. What a priceless and unique position for me to be in.
SOOO..I guess my point is this.
I love our friend Jason..I'm not offended or hurt by his request to stop writing the word Chiarian.
His comment caused me to really dig deep into who I am...or who I am now.
I'm thankful for that.
I adore people that make me think...they propel me to deeper understanding.
However, I'm sorry sweet friend.
I can't stop writing it.
The fiber of my being bears the inscription of Chiari-
Hello, My name is Michele
and I am a Chiarian.
I became a Zipperhead on January 23, 2013.
and I thank God I don't look like a Sleestak.