After writing many "notes" on fb and only publishing the "positive" ones I decided last week to post one that had the raw emotions that I sometimes face. I had never previously posted one like that, even though I had written them, for fear of appearing weak. With Chiari you put on a brave face everyday. Not because people aren't there to support you but because if you put on any other face, you risk breaking down completely. And no matter how awesome a person you may be (which lets be honest I am pretty freakin awesome...lol) nobody wants to be around someone who is on the verge of tears at any given moment. But I learned after posting this note that sometimes it is far braver to let your true emotions out sometimes. It doesn't mean I am weak, it just means I am human. After posting this, I received a few comments from Chiarians and non-Chiarians thanking me for my honesty. I also received a few private messages thanking me for putting into words what they were feeling. Thanking me for helping them find a way to voice their fears. Wow! I never ever expected to hear that. So here is the note that started my wheels turning to starting a blog:
"Aww manno! Is she really going to talk about this again!? Geesh, it's not like it is a big deal or anything. I mean, it's not like it was brain surgery or anything, so suck it up.....oh wait...what....it WAS brain surgery???
Yes, I am in one of those moods. They sneak up on me when I am at my weakest moments. The moments where the pain is too much. When the meds don't help and I just want to go to sleep and wake up another person. Or wake up and have this all be a horrifically long nightmare. But sadly, this is my life. These are the times I want to scream that life is not fair, that I wish I had never heard the word Chiari and where I could just forget for a moment that my life will never be normal. Now I know, nobody would ever classify me as normal anyways but I wish I was. I wish I could get up every morning like normal people. Get ready for work without any pain. Wake my children up without worry that one day I may not have the strength to do that. Send them off to school without the jab of emotions that come with worry that Chiari could affect me being the Mother that they deserve. Head off to my normal job and have a normal day. Never once saying a silent prayer for my fellow Chiarians who are suffering. Never once feeling a weird stab of pain in my head or neck or hands or anywhere else and panicking that it might turn into something worse. Or better yet, I wish I could make it just one day without the memories of the two weeks before my surgery haunting me. The helplessness that comes with facing your own mortality and this condition.
These weak moments are not just because of the pain. They have meds for that, and trust me, once I say "brain surgery" the doctors have no prob giving me pain meds. And even when they don't work I know it will pass. The pain is just the beginning. It is the other side of Chiari that makes me weak. It is the emotional trauma (may sound dramatic, but trust me it is traumatic) that gets to me. Not only do I have to deal with the stress that I faced before the surgery, I have to deal with the fact that I am not even cured. I faced and recovered from a horrible surgery only to have the doctors tell me they "hope" I will be ok. That "hopefully" my quality of life will be ok. That "hopefully" I will not need repeat procedures and something called "brain slumping" (yes, it is as bad as it sounds). HOPEFULLY!?! Sometimes I can put on a brave face. I can do my best impersonation of a positive Amy. I can tell myself and everyone around me that I WILL be ok. That I am so badass that I will never have to worry. But that is a lie. A great big lie to hide the fact that everday I am terrified of the future. Every time my head hurts it is the emotional side that hurts the worst. Because I cannot deny the fact that I have Chiari. I cannot pretend to be fine. All I can do is cry and question why I have to endure this. Wonder why this is happening to me. And in these moments I can't find the positives. I forget that I am blessed to be alive. That I am blessed that I only have these headaches occasionally. That there are Chiarians everywhere who have them everyday. I forget that I am one of the "lucky" ones. Because the truth is, I am.
But I don't want to be a Lucky Chiarian. I want to be normal. I want to go for a run and ride roller coasters. I want to jump outta a plane and white water raft. I want to tuck my kids in every night and know that I will always be able to take care of them. I took the kids to Sea World last week and Niko asked if we could ride one of the coasters. Before I could respond he, innocently enough, said, "Oh I forgot, your broken". I know he didn't mean it the way it sounded but I want to live my life without constantly remembering that I broken. Now I realize that this isn't my normal happy self. But the truth is I want people to see this side of the condition as well. I have spent the last 2 years sugar coating the realities that I face so people don't worry. And so that I don't appear weak. But this is me. Most days I am strong. But today I am not. Today I am hurting. Today I am in more pain than a normal person could ever imagine. Today I am admitting what I have been too afraid to admit, I am afraid. I have had these days before. So I know tomorrow will be better. I know that days like today are a part of my life now. And tomorrow I will go back to my happy self and continue to fight for Chiarians who cannot. But today, I am throwing a tantrum!"
That is my note. It is not pretty. It is not happy or exciting. But it is real. It is true raw emotions that come at my weakest moments. I don't write too many like that, kinda goes against my need to stay positive. But sometimes it is ok to let your emotions take over. Have a good cry and then get back up, brush the dirt off your shoulders and keep on going. I mean, without moments like that how can we ever truly appreciate the good times!?!
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