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Hello.

From pain,

art rises.

18.

18.

For the first time in my life I experienced real limitations on my body. The vessel I relied on to do what I loved most, to surf, practice yoga, travel, the outlets that kept me sane, were not longer available. My body could no longer support me in the ways I was used to. I felt tricked, I felt fear. Fear of never getting better, of doctors not believing me, being labeled as “just another teenager with anxiety”, fear of “you’re fine”, fear of looking up from the bottom of this mountain of confusion forever. I had a hunch, something wasn’t right. I knew it wasn’t just anxiety, I knew I wasn’t fine. And for a while, no one listened. I watched my life twist and turn through each moment with aggression and uncertainty as the future I had anticipated dissolved right before my eyes and my life came to a grinding halt. My trust in myself, my patience, my resilience, my willingness to fight tested as I settled into this new strange reality. I was no longer in control. Everything I came to know now seemed so unfamiliar, I seemed unfamiliar to myself, to my family. The comfort of my own home, my loving parents no longer made me feel safe. Was my mind playing tricks on me? Is this permanent?

Days filled with grey pain, lonely and stagnation turned into months. Doctor appointments 2-5x a week, needles, tests, procedures, trips to the ER, misdiagnoses and misinformation. Sterile cold white offices and hospital gowns. A monotonous blur, I was stuck in the middle. The sun rose and the sun set as the world hurried on without me. The warm summer sun greeted the California sky that I had missed so much and disappeared into autumn clouds while I sat in my room and tried to meditate the pain away. Hooked up to machines and monitors I lit candles and sat on my yoga mat trying to envision my life beyond this darkness. I had hope, I was hopeless. I cried. I tried to draw the pain away, cook the pain away, distract myself. I felt outcasted and abandoned. I felt so many contradictions trying to embrace my condition, hating my condition, knowing my suffering would give me strength, trying to channel my energy into something creative, failing to channel my energy into something creative and letting my emotions get the best of me. Knowing that this experience would change me in the best of ways, but feeling so damn weak, alone and resentful at the same time. My mind fished for the right words to answer the questions people asked and to even begin to explain my situation. But words fell short and people misunderstood.

However, flowers bloom in the most unexpected places. I watched small miracles unfold in the midst of hardship. I found gratitude in new places, smaller places. I saw people transforming around me and learning lessons as I was learning lessons. My truest friends and my family loved me so strong and unconditionally and my truest self loved me so strong and unconditionally too. Self love is great and all but when you are pushed beyond self doubt and forced to take a good hard look at the most unexpected and darkest parts of yourself, that’s when radical self love really begins. Suffering is a funny thing and I have discovered beauty and contradictions within it and the importance of creativity to survive it. This journey has been long and the road ahead is vast an uncertain. We still have yet to uncover a lot about my health and I have so many unanswered questions. Healing has yet to begun, but although there is more pain and challenges ahead, I am breathing, I will be inspired, I will create, I will support and be supported, and I will be okay. I trust that this is a gift and I will channel it in ways to one day help others.

 

Dysautonomia: The Ghost Illness

Dysautonomia: The Ghost Illness