Some people don’t know what it’s like to be stuck in a fragile body that’s not healthy with a soul that longs for adventure. They don’t know what it’s like to miss the little things that used to bring joy, like playing in the rain. But now? Rain causes me pain and my heart shatters every single time. That adventurous person still lives within me in spite of my fragile state. I still get giddy and excited when I hear thunder… But then the debilitating pain starts.
I constantly wonder what it would be like to be healthy. To never know what a flare felt like. And to dance in the rain once more. I dream about what it would be like to only need annual check-ups and not swallow a handful of pills at a time. To dance again without losing my balance or risking serious injury. To enjoy the sunshine on my face without overwhelming nausea or setting my body into activation mode. Or to play in the snow without a flare that can last weeks at a time.
I constantly wonder what it would be like not to see uncontrollable sadness in my loved ones’ eyes when I tell them that I can’t get out of bed. To not receive pity when people find out I’m sick. To never know what it feels like to hear someone utter the words, “Well, you don’t look sick.”
I want to know what the good things feel like again. What it’s like to be healthy.
When my colitis was bad, at least I had more mobility in-between flares. Even though colitis makes me feel horrible, I could walk to the bathroom without injuring myself. I know that with my current conditions, I’ll never know what these things feel like again. There is no remission and no cure. Hardly anything helps me, and nobody knows the cause of my condition. Every day, I’m afraid to leave my bed out of fear that I’ll hurt myself once more. I’m afraid to see my doctors because I worry that they will diagnose a new illness. I’m afraid of making plans because I may end up canceling them.
And on top of that, I’m tired of being afraid.
Hence, my one and only wish is to be healthy. I’ve been fighting illness since birth, and I’ll be fighting it until I die. But at least I will always know I never gave up. Illness isn’t a death sentence for me. However, feeling like a caged bird in my own body feels incredibly overwhelming most days. I try my hardest to stay positive, but I can’t always remain strong. I feel weak, I cry, I pick myself back up, and I try again. It’s a cycle that I can’t seem to break.
I am a spoonie. I’m a zebra. I am a fighter and a warrior. Once my journey is finished, I’ll truly know the meaning of peace. When the good days come, I welcome them with a warm embrace. However, there are so few of them. And they are so rare now. I long for a body that doesn’t feel like a prison, but I’m grateful that I am alive. I know love, I’ve seen beauty, and I know I’m here for a reason. Maybe I won’t know why and what it all means until the end, but until then, I push forward.
So, to my fellow spoonies – know that we may hurt, but we are warriors. We battle with our bodies daily and we win. Remember that. And never give up.
Photo by Noémie Vaillancourt on Unsplash
