Saturday, January 10, 2015

That's When Chiari Came To Town

Lately I find myself writing for hours on end...then posting nothing.
I feel as if in many ways my feelings don't mesh with the reason I started this blog.  My purpose has transformed and I've decided to stop avoiding it and make peace with it.
I realized yesterday how much I have really disconnected with the Chiari community(and really all communities and most people) over the past few months.  I have been somewhat of a hermit while also being somewhat of a social butterfly.  As I review my actions, thoughts, feelings..I try to find balance between the two and I can't.

Chiari for me has taken a backseat in my life.  Not that I am not still deeply affected by this disorder everyday OR that my compassion for my fellow Chiarians has waned.   I believe that what has happened is that I've been successfully able to make a shift in thinking that is not centered on daily symptoms.   Honestly, daily symptoms are merely an annoyance in my life.  Being dizzy= annoying, headache=annoying vision problems=annoying  numbness=annoying  trouble driving=annoying, and of course,  -- having to re-educate a doctor-- double annoying.

Chiari has become a mosquito  that is hummingly flying around my ear.  I'm swatting at it, but moving forward... refusing to let it land, sting or bite.  I believe this is a good thing. Chiari no longer takes up the entire room or overwhelms me.  I'm more positive, more productive, more purposeful.

I believe this happened by default, as I dove into building my coaching business, then became overwhelmed with family issues, I simply forgot to think about my brain, its function, it's lack of function, etc.  We all know memory problems come along with this diagnosis...I'm finding this to be a blessing.  In short... I finally quit thinking so much about MYSELF and got outside of my own head. (Pun Intended)

Last night, a dear friend text me something to the tune of me having a "perfect life".  Funny how our lives, that we deem a mess or out of control or anything but perfect can appear so different to those on the outside looking in.  After a few laughs with my friend, insisting my life was in shambles, I took a few minutes to write down the positive, the really good things in my life..and guess what--
She was right!  My life is perfect.  I am exactly where I need to be for this time in my life and I am doing exactly what I need to be doing.  I am living out loud, fearlessly, boldly and decisively.   I am unapologetic about putting my desires out into this vast universe and standing firm on my non-negotiables.   Long gone are the days of "grinning and bearing it".  Long gone are the days of saying "Yes" when everything in my spirit is saying "NO!". Long gone are the days of not living my purpose.

For awhile I thought my purpose was to spread Chiari Awareness.  Yes, I educate every person that asks about Chiari and no, I don't mince words or sugar coat it.  I also don't wear purple every day or spend all day posting Chiari photos and banners...not that there is anything wrong with EITHER of these activities.  The people that do this are called to do it and I whole heartedly applaud you... But this is NOT my purpose.  My purpose to to advocate, mentor and coach women (and men) with this disorder back into life, to encourage, build up and transform their lives.  THAT is what brings a glow to my cheeks and a spring to my step!  We can still live in spite of this thing..We can still excel,  produce income and make a mark on this world.  We can have not only an ordinary life.. but an EXTRAORDINARY life!!

I was living an ordinary life before I was diagnosed... but when Chiari came to town... riding in on a radiology report (I'm hearing a theme song from a spaghetti western in the background, while Clint Eastwood rides up with my MRI report in his hand)...That's when my best life truly began!  Every experience is a gift, every trip I soak in with a vengeance, every acquaintance I make along the road of this journey ministers more to me than I to them.  

So if you are newly diagnosed, newly decompressed, living in fear, pain, sadness... this is your opportunity to live anew...You can have an extraordinary life! I believe you can and I believe if you will spend some time listing your gifts, your strengths, your desires..then you can find the why of this thing in your life.  Be encouraged that it's not all gloom and doom. Be encouraged that there is life after being diagnosed, after brain surgery, after whatever your situation is!   Grab on to your life! Get busy living it!


  1. You just explained my existence. Thank you.

  2. You are an awesome inspiration Michele and the most determined woman I have ever met! Anyone out there reading this right now listen up... if you need help getting "unstuck" from the muck life has thrown at you and you want to take control of your life and make your dreams happen, then you would be wise to get to know this awesome inspiring lady and learn how you too can build your confidence, overcome your fears and conquer yourself! Thank you Michele for the inspiration you give me and all that know you, for you give me courage to shoot for the stars I have always been afraid of reaching for.

  3. Thank you, Cathy. I am thankful for you! You are too kind!