Very rarely do I lose my cool in public, but the day I was told that I had Chiari Malformation I and I would need brain surgery I flipped out. I called my mom, barely able to compose words through gushing, hopeless sobs. I drove to my sister’s house and cried for three days. I have been known to be reactive at times, but this was a complete shock to me and I have never felt so scared of a word I could barely spell.
Basically, my cerebellar tonsils herniated through my foramen magnum into my neck and was compressing my brain stem. Or, my brain fell out and made a big owie where my head and neck meet. I only found out I had it because after a car accident I was having problems. A year later these headaches started popping up and from there steadily became worse. As they worsened, my memory left, my bladder lost its mind, and I lost my emotional filter that allowed me to bottle up my emotions.
My job and just about everything about my life would either disappear or change after the surgery. I assumed I would get better. I thought I was getting better. Then, I began losing strength, words, balance. Over the past five years I have been living a reality that I didn’t even know was possible. It has changed the very fiber of who I am and while I long for the Before Time, I can only move forward.
Welcome to Chiari Conversations, and if it is your first time joining me, check out some of the older stuff. September is recognized as Chiari Awareness month and every year I try to do something everyday to spread awareness. Last year I think it was make a video everyday, but this year I will be focusing on my comic content. While I have better artistic skills, I chose a stick figure to represent myself because my world seemed so limited after my surgery and people would say crazy things to me and I often envisioned myself as a stick figure in a ridiculous comic. As if this situation in no way reflects reality, but the absurd part is that it does. People have rudimentary ideas about illness, pain, mental illness, and they are certainly not afraid to share them!
In all of this time (ok, only like two years) I have learned that this is just a good way for me to express my conversations, frustrations, dreams, hopes, and I hope it shows. I hope you join me for the month as I will release a post everyday detailing my problems with Chiari and its related issues. I hope you get a laugh and learn a thing.
If you want to learn more about Chiari Malformation and Syringomyelia (its evil cousin) please visit Bobby Jones CSF and look around their site for very useful information. Every year I help by volunteering to do their unite@night walk to help raise awareness and funds for research.
If you want to read my journey with Chiari, read The Life Of A Music Monkey although it can get pretty real over there, it is usually funny or at the least informative (usually).
If you want a comfy pillow check out Chimera Pillow and see the wonderful, omnipositional pillow that has an ice/heat gel pack and makes planes bearable (for me, at least). I am the SpokesMichelle and a blogger on their site, both are volunteer. The company is small, but it isn’t just about the pillows, it’s about spreading awareness and educating people.