Today I received some pretty devastating news about something that was missed when I was originally diagnosed 3 years ago now. That miss has now caused some unrepairable and extensive damage to my heart and brain due to a 3 year lack of sufficient oxygen…It’s to the point where blood flow isn’t even fully making it through my carotid artery when I move my neck…This means that on March 19th, I start a second entire new fight for my life. This is on top of what I already go through daily with my brain due to the damage. Tonight is hard…one of the hardest days I’ve had in a really really long time. I keep replaying a moment in my head where I tried to tell a doctor that I knew something was wrong and to please just believe me and test me…But instead they sent in psych…Who asked me if I “used the hospital as a way to escape my life”. From what they know right now, they don’t know if i’ll ever be able to be active like I was before. I’m limited to slow walking…and this is the girl who felt most alive backpacking through Montana…They want me to have zero stress…and this is the girl who being a dispatcher is my entire life and my true love. They are trying to decide if the risk of another hemorrhage from blood thinners is higher or lower than the risk of blood clots from my heart…And my 30th birthday is less than two months away.
So tonight I sat in my car on the side of the road alone and cried to the point of not being able to breathe…This hurts so much…I’m hurt about what’s happening, i’m hurt about what I have to give up, and i’m hurt that I can’t take back all those appointments and hospital visits where I didn’t push harder for them to test me.
However…Tomorrow i’m going to wake up, and i’m going to keep going…I’m going to keep putting one foot in front of the other, and I’m going to keep breathing in and out because I still get the chance to. I am going to put back on my battle armor and i’m going to let this storm hit me as hard as it possibly can. I’ve said before, and it is painfully true tonight, I miss so incredibly much, the girl I used to be before all of this happened…Before my brain bled, before my heart rewired itself…I let myself hope that this test would bring me a step closer to getting her back…However, it made me realize that she can’t come back. Today I learned that I have to finally let her go. They know now that I am never ever going to get “better”. I will be sick for the rest of my life…and you know what? I’m going to figure out how to make that Ok. Better than Ok.
So the pretty amazing thing is that this life that i’ll be learning to live won’t just be for me…But i’m going to live it for all the hundreds of thousands of chronically sick people out there who think their life is over. I know when you hear a doctor tell you you’re never getting better, how it sounds like you’re being given life with no chance of parole. I know what that horrific dark place that you go to feels like…I’ve been there…I’ve sat in that dark parallel universe where you watch life go on for everyone else and you feel like you’re screaming for them to save you but they can’t hear you. I know the smile and face you put on during the day, and then battles and breakdowns that go down behind closed doors…And despite it all, i’m going to show you how to stand back up. Broken brains still think, and create, and imagine, and dream, and broken hearts still love, and feel, and hope and have faith! I am going to show you that it isn’t the body that makes the person…but it’s EVERYTHING that’s inside of them. So this life can break and take any part of my physical health it wants…As my bracelet says in true Unicorn fashion…i’m going to “Keep Fucking Going”. ❤

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