I decided it was time to take my readers on a journey. The journey of who it is to be me and some of the oddities I come with. Arnold Chiari Malformation has colored my life since I was born, I just didn’t know it had a name until I received my diagnosis when I was 36.
I have no idea what it’s like to close my eyes and see nothing or darkness. I have patterns of light that play on my closed eyelids. This can make sleeping or daydreaming pretty challenging!! Image closing your eyes and seeing this pattern over and over and over again.
I dyed my hair pink prior to neurosurgery much to my mother’s dismay. I figured I would celebrate it before the surgeon shaved it off. My neurosurgeon was quite surprised by it the morning of my surgery.
My greatest coping tool is my PSP (Playstation Portable); but not for the games. I love the multimedia capabilities of it. I can watch movies, videos, listen to music, store photos, and surf the net. Yes, it’s the Hannah Montana version!!! Yes, I do realize I’m 40 not 14!
The weirdest place I have ever have been given an injection for pain was at the Lady Gaga concert. No, it wasn’t in the bathroom, it was in my seat just prior to the concert. I didn’t want to miss Lady Gaga’s entrance!! Considering what some people were wearing, showing the top of my buttocks was no big deal.
I am known as a zipperhead. The scar on the back of my head resembles a zipper; therefore, post decompression Chiarians are called zipperheads. I am considering getting a tattoo of a zipper around my scar. This is not a photo of my scar but it is just like mine. I know that zipperhead is also a derogatory term; but, Chiarians view our zipperhead scars as a badge of honor.
Even though I complain ALOT about the fact that plenty of doctors have no idea what Arnold Chiari malformation, I secretly like having to explain it. It makes me feel smarter than doctors. I like using the medical words when describing my symptoms.
The stupidest thing I have ever heard a doctor say. “You didn’t need to have neurosurgery.” This was two years after my surgery and he did not have any of my records (including my MRIs) from before my surgery. So he had no way of knowing how clogged my spinal canal was. QUACK!!
One of my greatest possessions is a picture that a friend colored for me. I am still irked that people don’t understand what Chiari is. It’s not like I wear a ribbon and people would know what I have. Anyone that sees a pink ribbon instantly thinks Breast Cancer. My friend, Terry, made me my very own ribbon. She chose the colors and wrote me a long letter about what each of the colors means.
Due to the confusion and brain fog, I’ve done some pretty silly things. Like put the cereal in the fridge and the milk in the cabinet. Or I will use incorrect words, like lunch instead of love. One of the silliest of these was when I spit on the bathroom floor instead of in the sink after brushing my teeth. I stood there looking at the mess on the floor and wondered why on Earth I’d just done that.
So the next time you are having a really rough day, just remember that we all have challenges, they just come in different flavors and colors.