It’s All In My Head

So, my brain is too big for my head.  Literally.  Take a look at this graphic from Conquer Chiari.

Chiari_DifferenceYou can call me Ash Chiari.

For nearly 8 years, I have battled an Arnold Chiari Malformation: Type 1.  Aside from receiving  a diagnosis where brain surgery is the only cure, it’s been a pretty hectic 8 years.  I mean, graduating high school, successfully completing college on time, moving to another state to pursue my career and getting engaged. . .sounds like a lot, right?  Now, take all of those life changes and add this:

  • Headaches that can become so debilitating and last for days at a time. Think of a pair of cymbals singing you the song of their people.  All. The. Time.
  • Random bruises.  Oh, wait, that’s from my loss of balance when this darn ol’ Chiari starts acting up.
  • Slurred speech, but good thing I can hide it as “Oh, I just speak really quickly!” Queue awkward silence. . .
  • Jazz fingers and tapping feet. Never mind that’s just tingling that randomly takes over my hands and toes.

For the past seven and a half years, I have been fighting with my body on what feels like a daily basis.  Of course my family and close friends and former professors/supervisors know what I’ve struggled with, but I have attempted to battle in darkness.

When I attempt to explain to others what my condition is they typically look at me confused and compare it to migraines simply because of one of my symptoms.  What’s difficult to explain is that I am physically different than those who suffer from migraines.

It’s literally in my head and a headache is just one symptom.

Some days, I have to fight with myself to get out of bed because of how physically defeated I feel.  Some days, I want to throw temper tantrums like a child being told no to an extra helping of ice cream.  Some days, I want to wallow in self pity and “woe is me” the night away.  Some days, I feel so terribly alone.

I do want to give praise to God for watching over me during this entire situation.  It’s been hard.  It’s been depressing.  It’s been infuriating.  Yet, at the end of it all, I thank God for allowing me to be affected and not an extra child in a 3rd world country or one of the hundreds of thousands who lives in poverty here in the US or even any one else in my family.  I  thank God for allowing me to see His grace throughout these last 8 years.  I thank God for helping me see that He has me and my poor oversized brain in the palm of His hand.

So, now that I’ve gotten that pity party and praise all out of me, let’s wrap it up, shall we?

  1. September is Chiari Malformation Awareness Month (Props to Gov. Haley for making it official in South Carolina.)
  2. I will be participating in Conquer Chiari Walk Across America on September 20th right here in Charleston.  If you’d like to donate to my team, please visit here.
  3. I would love it if you would visit this site to learn more about Chiari.
  4. Praise God for being the ultimate Doctor. He sent his word, and healed them, and delivered them from their destructions. (Psalms 107:20)

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