Autoimmune Disease · Health · Sjögren's Syndrome

…, but you’re supposed to be.

; I refuse to believe your lies.

Dear Body,

You will not break me. Do you know how frustrating you make life? I hate that it affects so many other people, and there’s nothing that I can do about it.

I’m supposed to lose chunks of you, but you laugh at the thought of it. You laugh at me for trying. You cling to meds, and blame it on disease.

You hate my skin

You hate my face

You hate my heart

You hate my hands

You hate my feet

You hate my nails

You hate my bones

My muscles, lungs, and insides

You slowly kill me and laugh as I struggle for air, panic to breathe, and as I gasp for CAN, you scream CAN’T – weakening my muscles to make me shaky, unable to hold things in my hands for too long, because you hear my OWN thoughts – I can – and it angers you. The sinful, painful, resistant, unloving body. This stability is all except stable. You do so much for me. You live for me, you love for me, you breathe for me, you push through for me

…, but I’m not supposed to be a broken, worthless, life – and I refuse to be.

 

Dear Heart,

Through your short life so far, you’ve felt a lot. We’ve searched up and down, back and forth, past and future for answers until we learned that we are made to be still, and trust in our Love that has any answer you can imagine – in season – in time. We prayed to learn patience, and alive is the test. Little did we know, our wellness search isn’t over – coping for almost 15 years now

…, but I’m not supposed to be a quitter, and neither are you.

 

Dear Words,

You finally have come together to make an idea worth while for schooled people who have pushed us aside. You found a further road to answers, and to be honest, it scares the hell out of me. Im not sure I want to know, but I need to know. I tremble in fear of the possibilities,

…, but I’m supposed to be alive, so let’s live while we’re at it.

 

Dear Strength,

Don’t be weak now. You’ve never been weak, even though it took years to find you after the tests put your back up against a wall. Possibilities pushed you into hiding. You forgot Love, you forgot breath, and if I was forced to pick one of the two, I would pick Love too. In Love, we can breathe – and Love has brought us to today. We have more tests coming up soon…

ENT.

Pulmonologist.

Surgeon.

Please don’t run this time. It’s scary all over again

…, but Heart is supposed to be brave right now, and we can’t do it without you.

 

 

Dear Mimi,

Sometimes tears roll down my skin because of the pain. Sometimes I miss you so much that it makes me uncomfortable. Sometimes I say “I” too much. You never referred to yourself. You will always be my biggest inspiration.

I know that you were worried about me, but I just realized why. You knew that I need you. You forgot that you also taught me to need Jesus, even more. I thought your promise was accomplished – swept away to be with the pain of life’s losses in the corner

…, but I’m still supposed to be in the middle of this road, along with one set of footprints – because secretly – I’m too weak to continue walking this road on my own. ✝️

 

Dear Love,

Thank you. My body, heart, words, strength, and inspiration will never be enough

…, but I’m supposed to be standing tall, appearing unaffected of this door that’s opened before me – and I am because I trust you.

 

“I’m Ready”

I see beauty in the shape of feathers, flight like arrows, sparrows
I’ve seen strength in the face of death
I’ve seen money in the streets of ghettos, Soweto, shadows fall
Across faces of pain, still they strain, for greatness
From those years, still sacrificing
No fears, just drive, like Tyson
In flight I’ll soar
Can’t sit back no more

I was waiting on this shit
Didn’t realize I was waiting on this
I’m young and I’m ready
I’ll run this shit till the death of me
My ambition is my weaponry
I’ll run this shit till the death of me

Determination became the anthem, hung like phantoms, and I learned
Retaliate on all my fears
I learned love was a type of cancer, killed you faster, the answer was
To find peace between those years
Over trembling floors, I’m steady
But they’ve written my death already
So many times
But this fire won’t die

I was waiting on this shit
Didn’t realize I was waiting on this
I’m young and I’m ready
I’ll run this shit till the death of me
My ambition is my weaponry
I’ll run this shit till the death of me, my ambition is my weaponry

I was waiting on this shit
Didn’t realize I was waiting on this
I’m young and I’m ready
I’ll run this shit till the death of me
My ambition is my weaponry
I’ll run this shit till the death of me

-Niykee Heaton

 

 

✝️✨❤️,

Bailey

 

Forgive me for referencing my health as “shit”, but it isn’t honestly anything more than a thorn in my side.

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