It's been a while since I've written about my chiari, but I get compliments all the time from people when I do or when I listen to other's stories. So I am writing this for those who have struggled, who are struggling, those who are helping someone overcome their chiari, and everyone in between.
First off, you'll notice that I am not capitalizing the word chiari, being that it is a proper name, it should be according to the "rules" of the Enlgish language. I however no longer am giving this horrible disease that much distinction or power. A small and somewhat meaningless action to those who have not suffered from this disease, but if you have, just taking away a smidgen of it's power is worth a celebration.
After I was diagnosed with chiari malformation in 2006 I didn't really think about the toll it would take on my life as I grew older. Now that I have two small children and have put my body through so much over the last 8 years it has definitely taken quite a chunk out of what was supposed to be the "best" years of my life.
I am supposed to be able to run around (and keep up with) my children. I am supposed to be able to hike up mountains with my family, to go on adventure walks with other young couples and their kids. I am supposed to be able to keep up with other people my age and not be drained after trying to clean up my house after my kids.
I am not lazy, I am not having a pity party, but I am also a realist. I know I am not able to do the things I want to do and it, to be blunt, sucks. It sucks a lot. And some days I have myself a little breakdown and a cry fest on my couch apologizing to my kids for being in pain and unable to do the things with them I know they want to do. Some days are better and I am up moving around a lot better and I can manage the pain a little better and we have a lot more fun on those days obviously.
So, yes I have bad days, yes I have good days. I take care of my children with all the love and support I can give them and I will always push myself to be the very best for them. I will never be the person I used to be and that just is what it is. I have to learn how to forgive myself for that. The question is how? Here's a start:
This year I started a CNY chapter for Chiari and EDS sufferers because I feel the best thing we can do is support each other. I have watched so many purple candles light up Facebook recently and it just breaks my heart each time. The lit purple candles represent a Chiarian who has lost his/her battle with chiari. Wether you know the person who passed on personally or not, the common bond of knowing how bad he or she suffered and knowing the amount of fight he or she had to do..... it's wrenching to know that he or she lost the battle, the only comfort is knowing that the pain is over.
The power of chiari is immeasureable. It takes away so much from those it affects. Once you are diagnosed, the life you once knew is completely flipped upside down and it will never be the same. All of the sudden everyone is looking at you different, everyone needs to be tested, people want to start poking you with all sorts of needles, doctors want to touch your brain for Pete's sake!
However, with the power of chiari comes a whole new wave of support from people just like you. They know exactly what you're going through and they will help you through everything you are going through every step of the way. You are not alone. The best thing we can do for one another is support each other. We need to get the awareness out to our communities and let those who are silently suffering know that we are here for one another. We need to show our physician's that we need the support from them as well. We aren't just a name/number on a chart. We are real people with a real disease and just because we may not LOOK sick on the outside, our pain and suffering is very much real.
The pain, sadness, hurt and anger will always come and go. It is something that will never go away. I will not say that I don't face those demons every single day. However, I will not give my chiari any more power over me than it already has. I am taking back my life and using the negative from it and turning it into something positive. If you are suffering from it or know someone who is, please know, you are NOT alone.
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