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How Finding 'My Song' Is Helping Me Find Myself in Life With Parkinson's

This is me…

  • I am brave.
  • I am bruised.
  • I am who I’m meant to be.
  • This is me.
  • I’m not scared
  • to be seen.
  • I make no apologies.
  • This is me.

Have you ever thought about what your intro song would be if you played professional basketball? Or what your walk-up song would be if you were an MLB player? No? Just me? Huh… I think you’re fooling yourself, but, whatever. I’ll move on. I’ve relegated myself to the fact that I’m never going to be a professional basketball player or an MLB player… damn Parkinson’s. What? Why the laughter? And that eye roll? You know just as well as I do that pre-Parkinson’s my chances were very good. But post-Parkinson’s, well, it’s just going to have to be a song… no intro or walk up. Just a song. My song.

Things are changing

This last little while, something in me has begun changing. I don’t know if it’s a new form of bravery peeking out from behind my writing. If it’s a rediscovered strength clawing its way back to the surface. Maybe it’s a new determination I’m just now unlocking. I don’t know. But something is changing. I’m done. I’m over it. For the past 17 months, since my lupus and Parkinson’s diagnoses, I’ve been letting these diseases tell me how I have to live my life. Not. Any. More. I’m putting my foot down. I’ll probably trip over it… but I’m still putting my foot down. I’m going to take over and I’m going to show these diseases how I want to live my life. It’s not always going to be perfect or even pretty. And it’s not ever going to be easy. But it is going to be.

I’ve got some work to do. I need to stop apologizing for things that I no longer, nor ever did, have any control over. This one is big. I’m a people-pleaser. I’m an overachiever. I apologize for ev-er-y-thing. I want those around me to be happy and I take that on as my responsibility. A while back, my therapist had me wearing an elastic band on my wrist. Every time I apologized to anyone for something that I truly had no control over, she wanted me to snap the elastic band. This would be a physical way to remind my head and my heart that I didn’t need to apologize to everyone for everything. I don’t wear the elastic band anymore. But I sure wore it long enough and I certainly snapped it often enough that it worked. Sorry, I guess I should say… it’s starting to work.

I’m going to check out a Parkinson’s-centered physical therapy group. And I’m going to try not to notice or care if I’m the only person there in their 40s. I want to try to stop hiding my hands behind my back or in my pockets when they tremor while I’m out in public. I need to stop worrying that the person behind me in the check-out lane maybe thinks I’m drunk because I can’t always (i.e. hardly ever) get my debit card into the chip reader. Sure. My signature is changing and looks a little wonky and illegible when I sign at the pharmacy. So what. So does the doctor’s who wrote the prescription.

I need to stop wondering how many sets of eyes are staring at me when my walk looks a little clumsy or when I have to take the gymnasium bleachers like a toddler some nights. I want to start celebrating. I want to learn to celebrate the fact that even though I may look a bit discombobulated to others, the fact that others are seeing me means that I’m out. It means that it was a good enough day… a strong enough day… for me to be out. For me to be doing life on my terms. Shaky terms. But my terms.

My song

If you’re wondering what any of this has to do with a song… A few weeks ago, when we were downstate for a volleyball tournament, I was riding in the car with my sister and my 4-year-old niece. She asked her momma if she would please play “her songs.” I know what you’re probably thinking… and maybe even already humming. She’s 4 and she wants “her songs.” Yep. Oh good, we’re about to listen to “Baby Shark” and “Boom-Chicka-Boom.” Loud. On repeat.

But… you don’t know my niece. She’s the cutest, the sassiest and the smartest 4-year-old bundle of energy. And “her songs?” “Her songs” just happen to be the songs from “The Greatest Showman.” And we did listen to them. Loud. On repeat. And I was hooked. My niece knows all. The. Words. And now, because I refuse to be bested by a 4-year-old, so do I. I adore the entire soundtrack.

But there’s one song in particular that truly resonated with me. One song that has stuck with me. And I can’t stop listening to it. Loud. On repeat. My niece calls it “the crying song” and now, well…so do I. It’s not my intro song. Nor will it ever be my walk-up song. But thanks to “The Greatest Showman,” thanks to performer Keala Settle and thanks to my favorite 4-year-old; thanks to some newfound strength and bravery inside of myself, it is my song. This hand I’ve been dealt is mine. This life… messy and beautiful… is mine. I found my song. Now, I’m working on finding myself once again. Like I said… It’s not always going to be perfect or even pretty. And it’s not ever going to be easy. But it is going to be. Because… this is me.

  • I am brave.
  • I am bruised.
  • I am who I’m meant to be.
  • This is me.
  • I’m not scared
  • to be seen.
  • I make no apologies.
  • This is me.

Lead photo courtesy of The Greatest Showman Facebook page