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5 Years

Chiari Malformation Art | Pixels

 March 28th, 2016. That was the day my life forever changed. 

Here we are now, March 28th, 2021, five years later, and my life is no where where I expected or thought it would be that day when I was 19 years old sitting at Swedish Neuroscience Institute at Cherry Hill in Seattle, still a dance major at Cornish College of the Arts. I don't like thinking about that day in detail, in fact when I do, I feel like I become a different person. The past few weeks leading up to today felt very different than in years past. 

On March 17th, I was lucky enough to be able to get my second dose of the COVID vaccine and I feel SO relieved which brought a lot of emotions up for me. My anxiety has eased up a small bit and a weight has come off my shoulders. It's been a year since this pandemic hit, and I've never been more aware of my health then ever before. 

Yesterday, my dancers had their first competition in almost 2 YEARS. COVID took away all of our competitions we were scheduled for last year and left us heartbroken, but we came back stronger then we've ever been. I felt so at ease with my students and had full faith in them and they delivered. The one thing that I know Chiari did for me was bring me home to where I needed to be for others. 

I caught myself the past week staring off into space often and getting caught up in my thoughts, my anxiety, my PTSD. It didn't help that I had an MRI this past Wednesday on my spine to double check everything after having a fall at the end of February. I say that I don't like to think about this day 5 years ago because, well, who would? I had NO idea how terrible my case would be. I had everything going well for me. I was young, healthy, active... & yes, my first surgery was successful for a few months, until the inevitable happened and I became even worse. When most 20 year olds were in their dorm rooms studying, socializing, and living their life, I was in the ICU having life saving brain surgery for the second time. I try my hardest to not compare my current life to others my age, or even those who are younger than me, but it's so hard, almost impossible. (Very thankful for my therapist.) I tell myself that the path my life has had to go down is extremely different than everyone around me. No one truly understands, even I don't somedays. I just have to have faith that I'll end up on solid ground. 

Here I am, 5 years later, now 24 years old, still sick. I know that Chiari Malformation has no cure, but I still don't think that it has hit me yet. People ask me all the time if I remember what it felt like to not have pain, and I truly don't remember. I've technically been having symptoms since I was 16 years old ... My greatest wish is to wake up one day and have no headache, but I know that won't happen, and one day, hopefully soon, I will accept that. This year has been full of trials as all years are, but I at least now kind of have a "routine." Each morning I wake up, move around in bed a little bit, assess my AM symptoms, take any medication I need to, and start my day. The trunk of my car always has extra water, ginger ale, and snacks, and my purse has all of my meds in it in case I need anything at any time. I am always prepared and on guard. Chronic illness will do that to you. It changes you. The first five years of Chiari were hell, and I'm praying like crazy that the next five treat me nicer. Regardless, I will fight like hell with all of the strength I have. #conquerchiari 







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