I think I will tell you the story of my butterfly.
I have a butterfly tattooed on my right arm immediately above my elbow. Under the butterfly is the code “M33.02” – it’s the ICD10 code for Juvenile Dermatomyositis. For 18 years I hated those two words, and still to this day I tremble at any words used to describe it: “sick” “disease” or “illness” because those were the adjectives used to describe my childhood. I didn’t get the fun, bright, and “normal” adjectives such as: adventurous, joyful and whimsical. No, I was none of those things because Dermatomyositis overshadowed anything good or bad in my life. I was never a little girl that had an autoimmune disease, but rather I was always the disease that became the little girl. Everything I was or was ever going to be was erased for me at the age of nine, and I have spent the last 18 years trying to figure out just who I am. Who am I if you take away the fact that I have a diagnosis only 1 in every 5 million children are blessed with? If I magically was cured who exactly would I be? How do I introduce myself? How would my life have turned out without the disabilities that I have and the challenges I have faced? What other identity do I really have other than “the sick girl”?
No, I didn’t do my math wrong, though it would not have surprised me if I had. Nearly 27-year-old me minus nine-year-old me = 18 years. My math is correct because this past year I have found my center. I have achieved a comfort I feel everyone strives to find. 18 years, that’s the time frame it takes to build an “adult”, a whole other person, and a whole other life. I spent 18 years of my life sick, embarrassed, ashamed, but more than anything I have felt anger. I have felt anger that I have never been able to capture into words. Anger so hot you can feel it in your bones, when your temples throb, your hands get so hot you think they may burn, and that tearing feeling straight down your clavicle. I have been so angry at times I truly thought my chest may crack in half, and all that would be left of me would be my hands clenched together and a torn open chest. Anger has lived inside this broken body for as long as I can remember. I don’t remember a time earlier than March of this year that I didn’t feel angry at the world, my body, and my life. Anger was a cloak I wore tight around my life to protect me from the sadness.
I live with a condition that never leaves. Myositis is my shadow, she is the pulse in my wrist, and the blood in these veins. If I live then she must choose to live along side me. I found my center this year by accepting my life with a chronic disease. You would think it wouldn’t take so long to find peace. You would think someone could never grieve for a life they never got to live. And, I am sure you would think it’s nothing but foolish to be angry over something someone can’t control, like their body. Yet, I was. I have never ever wanted to walk hand in hand with the monster that calls my body her home, but what I have found is that monsters can be beautiful, too. 2017 was a shift of perspective for me, a change in direction, a clear outlook, and a whole lot of desperately needed self-love.
I am writing a book. Did you know that? I began writing everything in life and about my life, again in March. The first chapter I wrote over during my new mission to complete one successful draft of a book by the end of 2017 was the chapter about removing my portacath. I had my portacath for over 10 years. It was a device I needed because, I was a “sick girl”. I would go every month to have it “flushed” with saline with all the other sick people. The port resided in my chest just under my left collarbone. Implanted in me like a collar that read “diseased girl”. I forgot the weight of it until the day it was finally dug out of my chest. A simple procedure turned life threatening, and if you didn’t get to hear the story maybe one day you will, but I’ll provide you with excerpt from the chapter that started this year for me in a positive light.
“Finally, I was instructed, again, to breathe in and hold, and I did. I then pushed out the air trapped in my lungs like it was all I had left to give in the world and it happened; the sound of plastic tubing running across paper. I cried, voluntarily this time. I was free. Right then and there I decided to get rid of anything in my life that wasn’t useful, joyful or beautiful.”
My life changed forever that day. The scariest day of my life began the first day of my new one. I wish I could start calling that day my birthday. March 10th, the day that device was torn out and the catheter later fished out of my heart was the day I was reborn. I cried all the way home because I was extremely high off drugs, in a tremendous amount of pain, but I was free. The weight of something like that and the symbolism it had greatly affected my life, and I never noticed how influenced I was by a silly thing until it no longer resided within me. Lying on that operating table, tears running down my face, and two nurses holding gauze to my neck so I didn’t bleed out; that was my jumping off point. I was brand new. I got to keep all my scars, all the hurdles, the experiences, and the pain, but I got a new chance to love myself.
I have selfishly loved myself this year. I have enclosed myself in rooms that were quiet so that I could ignore my husband and dogs, because I needed to write. I have maintained a blog about the things I love to cook and eat. I take time every night to visualize the things I want in life and plan out my next steps. I buy things that I want because I work extremely hard. I am selfishly in love with myself. I am proud of myself and my accomplishments, and you know what? It’s okay. All of those things are okay. I have found this beautiful balance between speaking abut my disease, living with her, embracing my struggles, but still I am solely just me. I am me before I am anything else. I am Krystal, and I choose to love and live in unison with my autoimmune disease, and not the other way around. I have quite literally been reborn, and I am so excited for 2018.
I am now the butterfly. My scars are all still here but I am telling you my skin feels brand new. My broken joints still don’t work but my body has been given the gift of life. This balance, this center, this energy, and this girl have been a long time coming. I am actively choosing a life I felt was buried a long time ago. I choose to walk with the monster that calls my amazing and resilient body her home, because if you let your monsters into the light they no longer have the power. Love your monsters intensely. Be the butterfly.