Today is National Poetry Day, so I thought I’d re-post a poem about my experience of MS. Everyone’s disease process is different; no two people with MS have the same symptoms, the same journey. This poem tells my story. Or a part of it, anyway. And when I’m able to articulate a part of my story in a way that is as authentic as I can possibly get, I feel proud. Because it’s not easy to get to the true and real of something so personal, so painful.
It’s harder still to share with others. Sharing my words, my story, takes more courage than any marathon, triathlon, or MS 150, that’s for darn sure. And that’s why I always feel so blessed, so grateful when others share their experiences with me. Because I know only too well what it takes to get your brave on and tell your story.
This poem is dear to me not only because I know I got close to the raw, ouch, want-to-look-away, want-to-cover-my-ears of my experience – but also because it’s one of the few times I have felt justified in deeming myself a courageous bad-ass for speaking up and out with my story. This is as naked as my heart gets. This is me leaping off of the high-dive into the Grand Canyon and Niagra Falls combined.
And ya know what? It doesn’t even matter if others deem this poem “good” or not. It doesn’t matter if no one, not a single reader, can see why it took courage to write these words. Because I know the story I set out to tell, and I know that I told it as well as words, my words, can say.
When it happens, everyone wants to know how I feel
They want details, particulars on the parts of me
Bullet-points on the failings of my anatomy.
To gauge severity.
Out of curiosity.
My husband, friends and far-away family ask
To better navigate the delicate ground
Between offering too little and too much assistance.
There are those who are afraid to ask, uncomfortable.
I sense their soundless query—a slick twinge
A dizzy tickle that skips, then slices between us.
How often have I lacked the words or energy to explain?
I shrug one shoulder, give half of a smile that begs
To be left alone.
Because, each time, I’m embarrassed anew
At the suddenly blossoming defects
Of this unpredictable body.
Still, there’s a need, I confess
To bear witness to myself—unflinching, unashamed.
The foggy, waterlogged sensation comes first.
Arms and legs betray me, morphing from bones and flesh with purpose
Into Silly Putty, which everybody knows can never make up its mind.
Between my temples grows a sticky bubbling foam
That feels the way a latte looks.
When I rise or turn my head too quickly
There’s a squnching sound laced with dull pops.
A child’s bare feet twisting on squares of bubble wrap.
Then swaying, from the inside—out, an ebb and flow of fluid.
Each heartbeat rocks, tugs, nudges this way, then that and back.
I focus on an image, one face
To keep from getting seasick.
Make of it a buoy or an anchor.
If you catch me staring, now you’ll know.
I’m trying to moor myself
To keep from sinking
Without having to ask for help.
Is it wrong to use people—who are sometimes strangers
For your own personal floatation devices?
Even if you don’t touch them.
Even if they aren’t aware.
Can salvation be stolen?
When my gaze is fixed
The tide in me is stemmed.
Relief and gratitude mix with pirated intimacy
Making me feel less alone, less adrift.
But still like a thief.
Fire sings along nerves
Shouts up my spine like righteous anger
Strangling cartilage at the joints, searing edges of marrow
Leaving the taste of burnt toast lingering on my tongue.
This hurting is like new grief, serrated and raw
Too sharp and sour to acknowledge.
So I pretend; I fake feeling “Fine.”
And already being a kind of robber
I just make room for the label of liar.
Those two sins are sisters anyway.
Feeding the optic nervous system
The membranes stretch to contain.
In the wake, scars slowly form
In the wrinkles of worn-thin places.
Wreckage of vision.
Not darkness—whole and pure
But a mocking half-light.
A smearing of words on the page that deforms meaning.
A warping of the sacred-familiar that disorients.
A bloodstained veiling.
In the shared blindness, the stillness
Lying curved to my husband’s hip and thigh
My face pressed into that holy hollow
Beneath the solid round of his shoulder bone
His fingers in my hair like warm tiny promises
Our breath for breath—skin to skin—grounding me.
Only then am I able to see
What counts most.
And there, with him
I am unbroken.
~ ~ ~ ~ ~
This poem is timely and fitting, in that I have been experiencing an MS exacerbation compounded with and complicated by severe auto-immune thyroid disfunction (the latter of which I was hospitalized for). I have also had two falls: the first resulting in a broken ankle and the second resulting in a broken elbow. You forget – or just don’t think about – how long it takes bones to re-knit themselves, until yours are the bones being re-membered.
I feel as if I’ve lost the last year of my life to feeling crappy. Between extreme fatigue, heat-intolerance, dizziness and lightheadedness, medications, and the healing of fractured joints – not being able to cycle or swim, and barely being able to walk – I have gained almost 40 pounds. The added weight has tremendously increased the pain in my joints (which are ruined from countless courses of IV steroids). It is going to be a long, Long, LONG road to recovery.
It’s scary as hell for me to share my feelings, especially about what’s hard, about what hurts, about what makes me feel as if I’m drowning. Not treading water with your head above the water-line – but flailing underwater, sinking ever deeper, looking up to the fading sunlight, getting further from it as your lung’s last breaths bubble past you. It’s terrifying to give voice to all of that.
But it feels so dang good to say the words that describe your thoughts and feelings, to read or hear those words in their “out loud” form, and think: Yes, this is as true, as real, as I can speak it.
Artists, storytellers, poets – they may not seem like the dare-devil-y type to you, but I’m here to tell you, they are. Art that reveals truth about the art-maker is high-risk. It is a high-wire no-net act of courage.
Go ahead, I dare you: tell me – or anyone – your story. Be brave. Send it in a letter. Sing it in a song. Write a poem. Today’s the perfect day.
Happy National Poetry Day, y’all!