A Look Back

How did this happen, how has it been over a year already?  Let’s see…it’s been 15 months since I had my zipper installed.  February 8^th 2013 seems like it was a lifetime ago, yet it seems like it was just yesterday.  I guess it’s time to hop in the time machine and revisit the past 15 months to see how this journey has been going.

I started this journey thinking that this was going to be sooooo easy.  I figured a little brain surgery was no big deal and that I’d feel great after a few days and that I was going to be one of the success stories.  Holy crap was I wrong! Little did I know that February 8^th was going to be the start of a 6 month period that I can only describe as hell on earth.  Instead of bouncing back quickly and getting on with life as I had planned – damn you Chiari – those 6 months turned out to be some of the darkest days of my entire life.  It wasn’t just pain like I had never experienced before that made those months so horrendous.  It was the other great stuff that went with the pain like the sudden dizzy spells that resulted with me on the floor trying to figure out how I got there or grabbing for a wall or the nearest chair. There was also a feeling of isolation that made those days drag on and on and on. 

I was fortunate that I was surrounded by such loving and wonderful people. I have the most understanding and loving wife, great parents and family, and the best friends imaginable. Yet even though they were all there for me, there was this overwhelming feeling of isolation during that time.  I bet you’re all wondering how that can be, how can a man so blessed with all these wonderful people in his life feel so isolated? It’s simple, no matter how much someone loves you and how much they are there for you there is no way they could ever understand what you are going through.  Not even other Chiarians can fully understand what you are going through, we all experience this differently.  At times you are truly alone on this journey, because only you know how bad it really can get.  You are alone because there are times that the only way to get through the day is to withdraw into yourself in the hope of finding a way to distract yourself from the pain.  Our brains are relearning how to experience pain during recovery and I don’t think I could ever describe or explain the sensations you become subjected to.  It’s certainly strange feeling isolated when you are surrounded by love, but that’s part of life with Chiari.  I’m pretty sure that if you ask any Chiarian they will tell you that this can be a very isolating disease.

I swear, after six months of hell it was like someone flipped a switch and the lights came on to lead me out of the darkness during month seven.  Sure I still had pain everyday but nothing compared to that first six months during recovery.  I began to feel human again, like I was part of the world, I could once again participate in my own life. 

The last nine months have been filled with surges forward and steps back.  The one thing I haven’t learned yet is how to listen to my body, who am I kidding I’ll never listen.  I still tend to do way more than I should, which results in Chiari reminding me that it’s still there traveling with me.  But I’ve got news for Chiari… I try to live life like I don’t have this disease.  For me, it’s a battle won each time I overdo it and push myself through the pain even when Chiari issues a smack-down.  Each battle won results in being able to look in the mirror and say “Screw You Chiari”.