A fellow warrior recently posted a powerful song to the group. “She Used To Be Mine,” by Sara Barielles, written for the Broadway musical “Waitress.”
The lyrics detail traits that the singer feels she’s lost, seeing reflections of who she once was. Isn’t that the case for anyone who’s lived long enough to be aware of changes in their lives? Substitute “shoes and this apron” for “meds and these symptoms”, and “patrons” for doctors, you’re a patient.
We readily find ourselves in the pages of books, the lyrics of songs, the paragraphs of a blog. Making connections to specific people or experiences – at all stages of our lives – is part of the human experience. Just observe the behavior of pretty much anyone, when the songs “Eye of The Tiger,” or “I Will Survive,” begin playing. No matter who we are/where we live/what we do, we know that “Rocky” is a story of survival, of finding the strength to get back up when it all seems pointless. Same thing with Gloria Gaynor’s powerful anthem. I don’t know anyone, (especially the women in my life), who doesn’t stand up and belt out every lyric with such depth of feeling, you’d think we were actively throwing someone out and starting over.
Why? Because all of us share much more than common interests. We share the same space on this planet. We fight the same fight, even though it’s personalized for each of us. I see so much of my own experience in “She Used To Be Mine.”
If someone asks me about my pre-RSD life, I’m nearly at a loss for words. I remember certain things: The joys of shared childhood memories, laughed about with my family. My teenage years. The exhilaration of meeting and dating my husband. Our wedding. The birth of our daughter. My work as a registered nurse. But then all of this medical stuff happened. It ran over and through me like a freight train. It was get up and survive or rot where I was. My husband and daughter gave me cause to rise. And so I did.
When I look at myself in the mirror, I see shades of the person I used to be. Catching glimpses of her when I pass certain places, see certain people. It’s sometimes like my life has been lived in two segments: before and after being diagnosed with RSD.
The lyrics about being “broken but won’t ask for help,” are so true. I argue with everyone, trying to prove that I can manage on my own: grocery bags, packages, anything. But it’s all in an effort to prove something to myself: that I’m still here, still valid, still fighting. It’s sort-of an ongoing battle that plays out daily, especially with my daughter. “Mom, I know you can carry them, but can I please take the grocery bags?” Actual quote.
As patients, we strive to find normalcy. We desperately try to reinforce that we’re not invisible, that we matter. We know who we were before diagnosis. And we’re also acutely aware of the things we can’t do anymore, of the people we can no longer be. Because now we wear a different label, carry new baggage.
“She is good, but she lies.” We quickly learn to answer the simple question “how are you?” with the equally simple “I’m fine.” Why? Because most people don’t want to know, don’t want to hear about our bizarre nerve pain. In my case, I just adjust my answers depending on who I speak with – especially neighbors. People with rare conditions like RSD are often put on the defensive, and not just with friends and family. We’ve all had bad interactions with the people meant to be treating us. I’m certain that nearly all of my warrior friends can recall at least one negative experience they’ve had with medical “professionals.” I put that one in quotes because there are more than a few doctors, nurses, etc. who should NOT be allowed to work with patients. As a nurse, it horrified me to be called a “freak show” by an ER resident. But it happened. It couldn’t be unsaid or unheard. Seeing him grovel and apologize – after my husband said that we’d heard him – was satisfying. At least I can laugh about it now…. for the most part.
“She is messy but she’s kind.” I wish I could blame RSD for being messy. It wouldn’t work though. I’ve never been organized, just ask my mom about my room back in high school. The room I shared with my younger sister (poor kid😬). Between posters of heavy metal groups and my disaster of a mess, she had to put up with a lot. (Yes…. let that settle in….. I had every surface area – floor to ceiling – covered in pictures of Guns N’Roses, Bon Jovi, Skid Row, Poison, & Metallica, just to name a few.). LOL.
As for being “kind,” I can only pray that people will look back at my life and say that I was. I try to be. Each time I worry about whether I’ve been a good example, I have only to look at my daughter. She’s about the best affirmation ever. Empathetic and ethical, she is just wonderful. (Pause for a momentary pride break. I am seriously proud of my amazing daughter. Ok. Thank you!).
The only lyrics I’ll dispute are the ones about being lonely. Yes, I have wonderful people in my life. But I’m thinking about an extraordinary group of people – my fellow RSD warriors. With each of them around to listen, reassure and understand, I am never alone. I hope each of them knows that they aren’t alone.
There are those of you reading this who will find solace in Sara Bareilles’ beautiful song – people who thankfully don’t deal with medical stuff every day. Her song isn’t about being sick. But we all find pieces of ourselves in every song that we love. That’s why we love them!
Enjoy the music. We are complicated beings, living ever more complicated lives. If lyrics bring us strength and comfort, I say raise it up. Blast that song! Find strength, power, courage… even hope.
Be kind to one another.
Peace & painlessness,