Survival Has Become My New Sparkle

I have a confession to make: Sometimes I’ll fake a smile.

I’ll tug the corners of my mouth taut while my wide eyes stare into the camera.

Getting through the day with cerebral palsy and other complex health conditions — the latest of which has me pushing an IV pole up and down the hallway several times a day — is exhausting. An indescribable fatigue overwhelms me and leaves me with the sense that I’m not really here in the now.

After recently spending a week in the hospital, I’ve been feeling especially absent. The constant beeping of machines and monitoring of my existence by medical personnel have added to this detachment. Being admitted to the hospital as an immunocompromised patient catapulted my nerves into overdrive. The hubbub of coordinating evaluations with doctors, therapists, and pharmacists demanded that I focus, even though I felt lifeless. But I reminded myself that sometimes the scary thing to do is also the right thing to do.

Having juggled these and other unpredictable fragments of hospital life, I felt triumphant when I was discharged. Emerging into the fresh evening air, as a breeze gently caressed my face, some of that anxiety diminished.

Establishing a new routine at home is proving to be cumbersome, though. As I attempt to adjust to life on 24-hour total parenteral nutrition, I can’t help but still feel empty, as if I left some crucial piece of me behind. So, when the camera flashes and I become aware of my trepidatious presence, I don’t always give it my full sparkle. And that’s OK. Sometimes survival is the new sparkle.

However, after another sleepless night, I was surprised when a genuine smile snuck up on me today. With my arm wrapped around a sturdy friend‘s waist, and my weary head propped against his shoulder, poof, the camera snapped!

Looking through the photos later, I was surprised to catch a glimpse of her: the real me. My characteristic grin, with my eyes squinting shut and my nose tipped toward the sky, confirmed it: This was a R-E-A-L smile. Who knew I still had it in me?

I hope you, too, are able to snatch a treasured moment that brings you closer to the real you. It’s easy to become trapped in a cycle of survival, wondering if you are somehow sacrificing your authentic essence. May you find a shoulder to rest your head upon, and a serene moment to feel the sun on your face. May you find a moment of peace with a cup of coffee in your hands, savoring the essence of our shared struggle and joy.

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Note: Cerebral Palsy News Today is strictly a news and information website about the disorder. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cerebral palsy.