I have been having a few pain-free days lately (although I’m terrified to even write this, lest I jinx it somehow. It’s hard not to be superstitious when you’re living with something as unpredictable as a chronic illness). I’m very grateful, and very appreciative for these days, but I’ve stopped announcing them to the world at large, because people who aren’t sick just don’t get the fact that starting to feel good after m-a-n-y days of being in pain is just as difficult and disorienting as it is when you start to feel bad after a handful of days of feeling good. And when I try to explain to anyone else why I’m kind of weirded out by a feeling-good-day and don’t know what to do with it, as much as I know they want to help, I cannot “just enjoy it.”
The best example I can use to explain what this is like is the time when I was a senior in high school and Hurricane Hugo came barreling through Charlotte, where we lived at the time.
There was the period of hurricane, which was scary and destructive.
And then the hurricane passed.
But then there was the aftermath.
Just like when you make it through yet another pain cycle.
And since the hurricane metaphor really works for me, I’m gonna keep on going with it to try and explain how living with a chronic illness is similar to living through some sort of natural disaster.
1. First, you must survive the hurricane/pain flare-up.
“When you’re at the end of the road
And you lost all sense of control
And your thoughts have taken their toll
When your mind breaks the spirit of your soul
Your faith walks on broken glass
And the hangover doesn’t pass
Nothing’s ever built to last
You’re in ruins”
“21 Guns”, Green Day
2. You must figure out how to transition out of existing in crisis/survival mode.
“Find me in the river
Find me there
Find me on my knees with my soul laid bare
Even though you’re gone and I’m cracked and dry
Find me in the river, I’m waiting here
We didn’t count on suffering
We didn’t count on pain
But if the blessing’s in the valley
Then in the river I will wait”
“Find Me In The River”, Delirious
3. You must make sure that the hurricane has truly passed, and that you are not just temporarily in the eye of the storm, with more devastation on its way.
“I know what you’re thinkin’
We were goin’ down
I can feel the sinkin’
But then I came around
And everyone I’ve loved before
Flashed before my eyes
And nothin’ mattered anymore
I looked into the sky
Well I wanted something better man
I wished for something new
And I wanted something beautiful
And wish for something true
Been lookin’ for a reason man
Something to lose”
“Wheels,” Foo Fighters
4. You must look around and survey the damage.
“And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
She’s down in it
She tried her best and now she can’t win it
Hard to see them on the ground
Her diamonds falling down
She shuts out the night
Tries to close her eyes
If she can find daylight
She’ll be alright
She’ll be alright
Just not tonight”
“Her Diamonds”, Rob Thomas
5. You must decide not to quit. Again.
“Well I won’t back down, no I won’t back down
You could stand me up at the gates of hell
But I won’t back down
Gonna stand my ground, won’t be turned around
And I’ll keep this world from draggin’ me down
Gonna stand my ground and I won’t back down
Hey baby, there ain’t no easy way out
Hey I will stand my ground
And I won’t back down”
“I Won’t Back Down,” Tom Petty
6. You must go out and make repairs. Again.
“Have you heard the news?
Bad things come in twos.
But I never knew
‘Bout the little things.
Every single day
Things get in my way.
Someone has to pay
For the little things.
And I’m through with the stories
And I’m sick to my shoes.
And the walking and the talking,
It’s got nothing to do with
The final solution.
It’s a box full of tricks.
And I’m through with repairs
When there’s nothing to fix,
When there’s nothing to fix,
When there’s nothing to fix,
And it all comes down to you.”
“The Little Things”, Danny Elfman
7. You must figure out how to live within this new set of circumstances. Again.
“Can you lose everything, you ever had planned?
Can you sit down again, and play another hand?
Could you risk everything, for the chance of being alone?
Under pressure find the grace, or would you come undone?
That’s how legends are made, at least that’s what they say.”
“Never Let Go”, Bryan Adams
Lather. Rinse. Repeat.
I’m not sure how to communicate how massively I second everything you’ve said.
The hardly-dare-to-believe-it joy of no pain, followed by the overwhelm and the guilt and the terror and the stress to get as much as you can done before the next wave hits.
And “just enjoy it” – there’s another phrase with that well-meant but oh-so-toxic “just”. The mere presence of it makes the sentence after it 90% more likely to be utter crap.
Wow- this is one thing I did not even dare think writing about. It works just as well for bipolar, PTSD, and all the other mental disorders that people (e.g. “people of faith”) do not recognize.
Agreed. Completely. 100%. That’s all I can say!
Now…to cram everything into my moments of “free” before the painful crash.
Yeah-this is hard one, because there is absolutely no way to “get” this if you’ve never suffered some huge, painful physical trauma yourself.
and you do get it jenny.
this is exactly the cycle of managing a chronic illness: you’ve spelled it out completely. it sucks and it’s empowering all at the same time.
you also practice it and show others how to do it. why? because you have taken the time to think it through. because you’re not too enmeshed in it to be held captive by the cycle. because you’ve learned over time that things like this have a cycle, they don’t stay the same, and it takes surveying the entire landscape of having energy, it dissipating, the return of symptoms, and picking yourself up and starting again to put the whole package of healing together.
i love how articulately you describe this and you’re helping others by cutting the downtime for learning about this – if they’re willing to embrace what’s truly happening in their lives and work with finding another way through it.
you’re a gifted writer! thank you for this. i refer to your stuff all the time in my own work helping myself and others through chronic situations.