Chiari Bridges

Category: Poetry

  • The Prayer of An EDS/Chiari/Comorbid Patient

    The Prayer of An EDS/Chiari/Comorbid Patient

     
    My sister asked me how she could pray for us specifically. Here’s what I’ve come up with.
     
     
     

    As we lift up a warrior fighting EDS, Chiari, and/or Comorbids,
    We are believing You for:

    Knowledgeable doctors/surgeons
    With hearts for the patients that are trusting them
    Ears to hear them
    And a willingness to unlearn and relearn

    CSF leaks to seal
    Cranial masses to disappear
    Narrowed venous structures to widen
    And cranial pressures restored to normal

    Sticky filums to release
    Stretched spinal cords to retract
    Conus Medullaris’ to rise
    And elongated medullas restored without consequence

    Collagen restored without mutation
    Intravertebral discs moving back into their rightful place
    Laxity issues resolved
    Straightened odontoids and clivus bones
    And craniums to rise

    Spines to straighten
    Cerebellar tonsils to rise
    CSF flow restored
    And syringes (syrinxes) dissipated

    Muscles reconditioned
    Paralysis reversed
    Vision completely restore
    Ringing in the ears to cease

    Habitual good night’s rests
    No insomnia, painsomnia, chronic fatigue, or narcolepsy
    Breathing issues corrected
    Restless legs calmed

    Nerves decompressed
    Even vagus restored
    Motility perfected
    Inflammation gone
    And pain a thing of the past

    Depression replaced
    Hearts seasoned with grace
    Families restored
    Where no one’s needs are ignored

    Thank You, Father,
    That despite all we’ve endured,
    Your grace continues to be sufficient.
    That none of this has taken You by surprise;
    You knew all we’d face, yet You still chose each of us and call us Yours.
    Our hope is in You and You alone,
    The Author and Perfector of our faith,
    We stand on Your promise that You still have a plan for each of us!
    We might not know what it is or understand how we’ll get there,
    but You are a good Father, and we trust You completely.

    In Jesus’ Name, Amen!

    (Note: This prayer was written to become a collaborative prayer, that we can add to as needed.)

  • More Than a Headache – A Warrior’s Poem

    More Than a Headache – A Warrior’s Poem

    It started with a headache,
    But it didn’t go away.
    Soon I would find out
    That it was here to stay.

    They all say, ‘the sun’s out,
    go out and get some air!’
    But my wobbly legs ache,
    not to mention every strand of my hair.

    Every Doctor says, ‘You look just fine!
    It must be stress. Just get some rest.
    Here’s more meds to try to help,
    And we’ll run a bunch of tests.’

    As time went on and
    the headaches got worse,
    No meds would work
    This felt like a curse.

    I couldn’t work.
    I couldn’t clean.
    I couldn’t cook.
    Still not knowing what this means.

    I wouldn’t give up
    Until I knew what was wrong.
    It’s a Chiari Malformation,
    So you must stay strong.

    So, I have a malformation
    In the back of my head.
    There isn’t a cure
    So I plead and I plead.

    Please take this away
    And I promise I’ll be the best.
    I want to live my life
    Please just run some more tests.

    “Brain surgery may help you
    But it’s not a guarantee.
    We will remove part of your skull
    And you should be headache free.”

    As I walked into surgery
    I felt a sense of peace.
    I just knew I would be better
    And it put my mind at ease.

    Two surgeries later
    And my symptoms are still here.
    There’s no more options or treatments
    And my pain won’t disappear.

    My new life is different
    And not what I had planned.
    I still don’t know my purpose
    And I don’t know where I stand.

    One day at a time.
    That’s all I can endure.
    So I’ll keep raising awareness
    Until Chiari Malformation has a cure.