I remember being young and feeling so confident in my body that I would dance around the room carelessly. I would watch Dancing With the Stars with my sister, and we did our best to recreate their advanced routines. I remember feeling so smart, because I could read for hours on end and remember all of it. I remember taking the microphone at a school sale and walking around doing my best to make people laugh and sell some cookies without caring what anyone thought. I remember when I had no idea I wasn’t invincible.
I will never forget when that all went away. That morning, I woke up, and my hands were shaking so badly I couldn’t straighten my hair. The next morning, I couldn’t move my right arm. I remember crawling out of my cousin’s house on my hands and knees trying to escape the feeling that was now my reality. I was screaming on the lawn for help, and I fainted from pain as my family held me and prayed over me in hopes a God I’ll never believe in would take back my pain. I remember begging the school to call my mom instead of an ambulance, because my hands and lips were blue and purple. I remember when everything I knew was gone. People stopped telling me “You’ll go so far.”Instead, they started asking me, “Please stay.”
It was never easy to adjust to a new me that I’d never asked for. I had to relearn my body and what I could and couldn’t do. I was unpredictable. I had been so strong, and now I couldn’t get out of my bed without wailing. It killed me to lay in bed thinking of what I used to do and fearing I’ll never be able to do them again. I missed feeling careless, confident, hopeful and curious. Every once in a while, I mourn the person I was. Remembering everything I was once capable of, and everything I had to go through just to live, will always be a struggle we spoonies have to endure. Although it’s hard to remember, I never want to forget. It’s given me a goal, not to become who I was, but to create a new me.
I may be sick, and I may be in pain, but I am growing. I have learned from my “new” body. I have taken control of it. Although the road is hard and unsteady even still, I’m thankful I had to do it. One experience few people go through in life is having to make the decision of living or existing. For a long time, I chose to exist, because I feared my new self. But I remember the day I chose to live. I remember the first time I could write with my right arm again. I remember the day I walked through the airport without needing a wheelchair. I remember seeing my mom cry as she watched me play volleyball with my little sister for the first time in years. I remember the day I got to go home to my family and restart. I may mourn who I used to be, but I appreciate who I am now. I may struggle with my chronic illnesses, but it is not all I am. And I am perfectly imperfect - just the way I am.
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