Have no fear, for when I’m alone, I’ll be better off than I was before.
I’ve got this life, I’ll be around to grow. Who I was before I cannot recall.
Long nights allow, me to feel I am falling! The lights go out. Let me feel I’m falling! I am falling. Safely to the ground.
I’ll take this soul, that’s inside me now – like a brand new friend, I’ll forever know.
I’ve got this life, and the will to show, I will always be better than before.
Long nights allow me, to feel I’m falling! I am falling! The lights go out.
Let me feel I am falling! I am falling! Safely to the ground.
(Copywrite 2007, Eddie Vedder)
I’ve written about the movie “Into The Wild” in a previous blog. But I’ve never mentioned the amazing soundtrack by Eddie Vedder (Pearl Jam). I can – and frequently do – listen to it on repeat.
There’s a song, “Long Nights,” with lyrics that remind me of my own journey with RSD. Although written for a movie, with an entirely different intent, it’s impossible for me to miss the correlation between the words and my own life.
When I was first diagnosed, I was still working as a registered nurse. The RSD was confined to my left foot and lower leg. It wasn’t until months – then years – in, that the rest of me got involved.
It’s been quite an arc! Starting slowly, at the base of an incline: diagnosis! Then a very steady climb to out of control pain and frequent treatments. Different meds with varying degrees of success. More parts of my body affected. Many, many procedures.
Keep your arms and legs inside the car as we climb toward the top of the arc! A place where I’d make slow progress only to slide backward. It was a lot of back and forth, trial and error. Between smaller procedures, I had the two major operations. That’s when things slowed down a bit. Just a bit. Wary of the proverbial “other shoe” dropping at any moment, I stayed guarded.
A calmer descent, heading towards now. What is now? What place am I even in? I realize it’s not enough to simply say I’m “better off than I was before.” Of course I am. But I’ve had a cosmic shift of sorts. It’s a weird limbo, feeling mostly ok until I don’t. Pain mostly under control, until it’s not. There’s a sort of walking on a tightrope sensation. Except I’m stronger now, I can handle falling off. “Let me feel I’m falling! I am falling! Safely to the ground.”
When dealing with daily medical “stuff,” it becomes remarkably simple to fall into habits and patterns that perpetuate depression and the sense of being in a slump. I personally felt like a person who’d donated their body to science while still living. It’s not uncommon to melt into that reality when it’s your every day. “I’m in control,” becomes “they’re in control” faster than you’d imagine it would. And by “they’re,” I’m referring to your medical team.
Sometimes, it’s hard to remember things about my pre-RSD self that I never would have forgotten otherwise. And after everything that happens to someone in this situation, choices have to be made. Do you fight? Do you let it all hit you like waves on a shoreline? Can you just keep moving? I had to fight. Having a daughter made the decision for me. I didn’t dwell. I tried not to. But I was grieving my old life – my old goals, really, as each one of them died away. And then I evolved. With each new drama, I’d move forward a bit more until I got caught up in the fairly regular intervals of: 1) seeing my doctor; 2) planning procedures; 3) having that procedure done; 4) waiting to see if it worked. 5) following up about it; 6) planning the next one. It went on like that for years. I barely recognized myself, pounds and pounds heavier and just plain miserable. “Who I was before, I cannot recall.”
But with the simple malfunction of a morphine pump, came a significant shift in reality. The cosmic shift! If it hadn’t stopped working, I’d still be floating along, medically controlled but internally & emotionally disconnected.
If it hadn’t broken, there’s no way I’d be back in school. There’s no way I’d be planning ahead in any way, except for my daughter. I’d never have wanted – or expected – more from myself. I was lucky. AM lucky. This is the reason I’m in constant positive, “motivate people!” mode. I can’t help it. “I’ll take this soul, that’s inside me now. Like a brand new friend, I’ll forever know. I’ve got this light and the will to show, I will always be better than before.”
Obviously, my circumstances aren’t yours, not his or hers. But we share something in common: having RSD, having a chronic illness. And it doesn’t have to control us! I know it feels like it does. But there are little ways that we can fight back. And we have to. Call it denial if you’d like. I call it survival. It’s mentally debilitating to feel like you’ve lost. That’s where I was. I’ve been down that low. And I don’t want that for any of my fellow warriors.
Take any light you can, arm yourself with that. Rediscover yourselves, things you love. Even if you aren’t a patient – maybe you’re the caregiver – same deal applies. And for those of you who aren’t battling a daily medical situation, this goes for you too! It’s easy to be bogged down by life – by the things you can’t change. Or think you can’t change.
I’ve read – and believe – that we can’t always control our circumstances, only our reactions to them. It’s true. I can get angry about being ill. I can rant and rave but it doesn’t change my diagnosis. Right? Of course not. But I can absolutely decide to be proactive and positive. There’s no upside to permanent anger and bitterness. All you get is more angry and bitter. And that’s not good for anyone. Of course I get angry about all of this. Especially when I’m on a roll of feeling good and getting a lot done! But, for me, I find it most productive to focus – whenever possible – on the good things in my life.
So, on these nights when I can’t sleep, I focus my energy on writing these blogs and thinking about my designs. About costumes I’d like to make.
“Long nights allow me, to feel I am falling! I am falling. The lights go out. Let me feel I am falling. I am falling, safely to the ground.”
As warriors, we’ll be here to catch each other.
Be kind to one another.
Peace and painlessness,