Life Lesson #447~Backseat Passengers

“I am brave. I am bruised. I am who I am meant to be. THIS IS ME.” ~The Greatest Showman 

Chronic illness is a pain in the butt. Especially when one comes out of left field and smacks you up side the head. There’s no nice way to say or get around it. Chronic illness is a bully. And if you have or love someone with a chronic illness, you get it. I’m not gonna sit here and tell yoo lving every day with a life altering illness is heroic. It’s not. There’s nothing romantic about it. Jamie Wingo spells it out perfectly. “It’s not just pain. It’s a complete physical, mental and emotional assault on your body.” 

Chronic illness is exasperating, annoying and irksome. That’s really what it is. And yes, it can be challenging too. Most of us within the spoonie realm will tell you straight up, we prefer keeping our vexing and at times aggravating diseases out of the spotlight. We spend a lot of our time concealing our troubles. Think of it as camouflage. Not everyone needs to know what we do, right? As for my own lineup of delinquent hitchhikers? I try and keep ‘em out of sight, tucked away from the world unless absolutely necessary.  

Let me set the record straight. I’m not aiming to make the devil’s most wanted list but I won’t deny it, I want him aware I’m awake, alive and coming for him. After all, this is me, who I am, scars and all. And just because a multitude of irritating, pesky, bothersome buggy blights call my body home, doesn’t mean I’m incapable of taking the bull by the horns and riding its back. True, it may not be for 9 seconds, but you can be dog gone sure I will saddle up. May take me longer than you, but one way or another, I’m getting on that bull. Living with a chronic illness makes you many things, but soft is not one of them. Most of the time we spoonies are simply trying to cross the street like everyone else. The only difference? Despite looking both ways, twice, checking for cars and deciding it’s safe to cross the street, every once in a while, we forget to look up. And wham! An airplane wipes us out. 

Most spoonies will tell you, we don’t sit in the passenger's seat of life. We can’t. If we did we’d be in a ditch, upside down watching our lives slip away. Honestly, it’s probably true for most folks in this world, chronically ill or not. Now look, I can’t speak for anyone else, but personally I’ve learned Winnie the Pooh said it true,” Life is a journey to be experienced, not a problem to be solved.” Experiencing life means participating in every last detail, good or bad.  

Look, it’s not ground breaking news. My body is at war with itself every day. In spite of all the meds, exercises, precautions or even my can-do attitude, the life I could have had, disease and pain free isn’t going to happen. But you know what? I’m ok. I really am. I’m at peace with my path. Sure, at times my sidekicks get a little wacky, get a bit squirrely or go plain cuckoo. It happens, what can I tell you? Every curveball or unexpected roundabout detour has made me who I am.  I’m not a victim. I am a butt kicking, cancer surviving, autoimmune fighting warrior armed with a pen and a will to rise above whatever disease, condition or pestilence life throws my way. Theodore Roosevelt said it perfectly, “Courage is not having the strength to go on; it is going on when you don’t have the strength.” And this is what it means to be a spoonie. 

So where’s the Disney tie in? I simply don’t have one today. What I do have is my truth. Sure I get it. It’s uncomfortable, right? Talking about chronic illness, the spoonie theory and all. And you’re asking yourself why in the world is she acknowledging her traveling companions right now? Why Life Lesson #447~ Backseat Passengers? Well, it’s time. And after picking up a new traveler recently, I figured why not? Let’s get it all out in the open. I mean I am a spoonie after all. I have chronic illnesses as in plural. Do they get the upper hand? Sometimes. My spoon drawer isn’t constantly full. Believe me, I’ve overdrawn and left it empty more times than I can count. But the one thing I have always had is humor. Laughter never fails to break my fall. 

Recently a friend of mine told me, “My friend, what a crazy year you have had. No, scratch that. What a crazy life you have had.” And she’s right. If you’re a spoonie some years are crazier than others but all of them are nuts all the time. I love her sentiment and I couldn’t have described my life any better. Humor enables us. It backs us up, allows us to freely walk up to the big dogs and leaves them begging for a belly rub. To paraphrase Ann Bradford, “you gotta tell that peanut gallery inside your head to sit down, shut up and stay quiet” 

So how do I manage 13 backseat passengers? Well, lets put it this way ..I’ve learned to accept my limitations. OK, sometimes anyway. Let’s face it, being sick everyday of your life is hard. I don’t know who said it but man did they ever get it right. Having a chronic illness, “is like swimming upstream every moment that you’re awake.” So, what wisdom do I have to offer? None really. I’m no self-help guru. I can tell you this. After 38 years of chronic illness I’ve finally learned to accept and acknowledge every one of my 13 plus unruly, willful backseat passengers without giving them the front seat.  

 See, for me anyway, when it comes to life and her adversities and calamities, there are two choices. One, I can give those gnarly, complex ailments of this world the front seat or two, I can take the wheel. Sure, we can relinquish the wheel to sorrow and regret, hand over the map to grief and let failure navigate. But all that gets us in the end is tossed around, careening off the road into a ditch and hanging upside down. And that's no way to live. You're right. Life in general is a mixed bag of joy, sorrow, ease and suffering. And yes, some of us get a little extra dollop of one more than the other but you definitely don’t have to be a spoonie to understand this fact. Bottom line... just because you’re struggling with fear or scared and afraid of a giant hurdle in your way, none of it means you’re a failure. Not one of your diagnoses or obstacles defines you. You define you.  

2 Thessalonians 3:13 says this. “Brothers and sisters, we can't allow ourselves to get tired of doing what is right.” So, my advice, one small spoonie to the rest of the world? Don’t be ashamed of your bruises or scars. Keep doing what’s right. Take a deep breath. Hold your head up. Put your extra passengers in the backseat and take the wheel.  

“She silently stepped out the race that she never wanted to be in, found her own lane and proceeded to win.” ~ Unknown 

Merida Grace