A.S. Face 0901: Janelle Gingrich-Caudle “Ella”

 

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The Faces of Ankylosing Spondylitis: Janelle Gingrich-Caudle

What can I say that hasn’t already been well presented by those who are here? What adjectives can be used that may better articulate the physical anguish endured? How can I convey the torment that plagues the mind, body and soul? How can my words properly give merit to the hopelessness we feel? Why must we be afflicted and forced to live with this uninvited, unwelcomed companion- Ankylosing Spondylitis. How can I express the loneliness felt silently while observing my healthy peers enjoy rides at an amusement park, socialize and make new friends, pursue higher education, achieve career realization and advancement , celebrate a new pregnancy , witness the miracle,  raise a child? They live seemingly unencumbered as I feel trapped, plagued. How can I continuously celebrate the successes of another’s achievement and refuse to accept bitterness as I contemplate my own losses?  What else can be said to express the monumental hurt that misunderstanding and apathy have caused, wounded mostly by those we love? At times these acts are innocent and unintentional. After all, how can anyone who is unaffected possibly understand all of this? But…I still scream even if it’s only inside-“How can you be so insensitive?”

HOW. CAN. YOU. BE. SO.INSENSITIVE?

You and I are both keenly aware how this suffering can lead to anger, bitterness, resentment, despondency, and isolationism?

What words can possibly be said to those suffering skeletal changes-fusion and disfigurement? In one respect it is validation of the silent war that has waged for so long inside the body. In another, it is a horrifying reality that some are forced to face.  Still for others-I express gratitude that new treatments may likely spare them this agony. I believe for most of the newly diagnosed- it will!!!

What else can I add that hasn’t already been said so eloquently by those who have gone before me and those who will follow?

These realities exist in differing measures for all of us.  While this is true, it is painful to look back and remember what I’ve endured; my personal and unique story. There are secrets inside-the pain of my very own journey.

In the past I compared my suffering to others (my situation was always much, MUCH worse (wink, wink)). The day of freedom came when I was enlightened to see how grossly unfair, judgmental, insensitive and selfish this practice was. I, like you can become what we hate. The pain inflicted on us can be the very pain we inflict on others. We do so unintentionally, innocently…Isn’t that right?

.

Unchecked acts of comparison will lead eventually to apathy. This existence is sour and toxic for one’s self and for others. We have a ruined legacy. Is this what we wish for?

Ankylosing Spondylitis can recreate our true identity. Many times we forget who we really are-the person outside of this disease. This dear one becomes lost, he or she even hides from ourselves. Your true self becomes a complete stranger within- buried under pain-despondency, pain-loss of dreams, pain-hurt or rejection from others, pain-witnessing slowly undesirable changes, pain-withdrawing from the friends, society…the world. PAIN! This one, precious and unique, will stay concealed only as long as we remain unaware or unwilling to reacquaint ourselves. This one, you know YOU! The beautiful you! The brilliant, witty, talented, compassionate, funny, wise, gifted, simply amazing…YOU!!!

Has A.S. stolen YOU too? My opinion is he has already robbed us quite enough; don’t let him confiscate YOU too?

Fight!!! Don’t let the AS win!! 😉

So what can I say that hasn’t already been said?

Unbreakable

Our members may fuse but

Our hearts will remain soft
Our wills pliable
Our spirits unbroken
.


Our bodies may be inflamed but we will remain calm, cool.
Our eyes may flare but we will not lose vision.
Our dreams may be delayed but never forgotten.
Our heads may bow, but we will stand straight, focused, mind to the heavens.

We may suffer silently but we will not succumb to
Fear
Isolation
Despair

We may live with an unwelcomed companion but disease is not our identity.
Our bodies may be painful, but we are not pain.
We refuse to become bitter, only better.
We will not serve the disease, rather it will serve us.

 

Our essence is life!
We are understanding, thoughtful and compassionate humanity.
We live with hope and hope lives within us.

Janelle Gingrich-Caudle
Spring 2013

 

This poem is written for and dedicated to my brothers and sisters in the fight with Ankyslosig Spondylits.

With Love and Well Wishes,                                                               

  Janelle (Ella)

North Carolina, United States of America

 

 


42 Responses to “A.S. Face 0901: Janelle Gingrich-Caudle “Ella””

  1. I just love your way of communicating 360 degrees and not leaving anyone out.
    I thank you for your love and courage.

    • Jacquie, thank you kindly. Courage describes every single one of us, doesn’t it? Thank you so much for your response. ❤

  2. You have described our existence in such a beautiful way!! Thank you!

  3. Wow! Tears!!! Beautifully written. I know exactly what you mean. I am tired of pain but without pain I would not apreciate health! Good luck to you on your journey.

    • Dear Melissa, There is nothing like pain that allows us to really appreciate health. There is nothing like pain that can help us appreciate the beauty around us when we are unwell. I believe we are forced to see things that many people miss in life. I hate that all of us have to live with this affliction but you have mentioned something that is key in coping. Seeing something positive in all of this. ❤

  4. Brilliantly said …. Thanks…love the poem
    …..

  5. I have to say, I am sharing this, Janell (Ella), because your eloquence far exceeds my own. Your explanation of the emotional toll and sense of self cannot be said better. Thank you so much for sharing. I have turned inward myself and found that in order to succeed in my own battle I need to turn outward. God Bless You!

    • Leigh, you are so honoring. I hope that by sharing others will feel understood and encouraged. I truly understand the inwardness that you expressed. It is likely that most if not all of us do tend to isolate. You are so wise to understand what must be done by reaching out. It gets easier and easier to hide within. The longer we stay in this state the more difficult reaching out becomes. I am challenged by this. Your words have inspired me to emulate your decision. May God bless you to and may we see the blessings that we are given so liberally. ❤

  6. Beautiful Ella. Thank you.

  7. Dear Janelle,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

    • Cookie, thank you so much for the opportunity you’ve given all of us. It is an honor. ❤

  8. Thank you for posting this. I really, really needed to hear this today, to the point that I have tears in my eyes.

    • Awww, bless your heart! I am so grateful that it reached you today. May you feel a sense of hope. May you see who you are, who you really are and celebrate the beauty that is only YOU! ❤

  9. Dear Janelle,

    Thank you for sharing your story with us. Your poem and story were beautifully written….brought tears in my eyes.. We must continue to have HOPE, and we must continue to fight our unwelcome friend AS. Don’t give up!
    Love you my AS sister!!!

    • Dear Hedy,
      You are so kind. 🙂 Thank you for honoring me by reading my “face” and taking the time to express yourself. Yes, hope is life-giving. It gets us through times that can feel pretty bleak. Remembering in those times that we will have happiness, we will have joy again- this moment, as long as it is, will not last forever. I have a feeling that you Dear Hedy will continue to win the fight as you truly seem to live life to its fullest. I return much love to you. ❤

  10. It’s like you wrote everything I think and feel 🙂 glad to know somebody out there understands what it’s like mentally as well as physically.

    • Hi Lori!
      Thank you for your comments. 🙂 While the online A.S. community is diverse, we have more in common than we may believe. Acknowledging the emotional toll due to all the factors mentioned; unmanaged pain, unbelief from those close to us or employers, pain that is truly inexplicable, endless in some cases causing fusion and/or deformity. While all of this is happening to us, there is still a life outside and dreams inside- both of which continue to progress with or without our permission. All of this loss leads to an altered self if we are not aware. The psychological aspects can not be ignored as we treat the physical, we must take care of the one that has to live with this unwelcomed, uninvited companion. It is my hope that those who read this post will believe in the “little me” and find him/her. Then help others to do the same. Peace to you 😀

      Ella

  11. Love it!!! Speechless and overwhelmed with your beautiful words!! Welcome to the Faces of Ankylosing Spondylitis!! Prayers to you always… One of the things I love most in my fight against AS, is helping our brothers and sisters of AS in their fight in lifting their spirits up, to let them know they are not alone, to encourage them to smile each day and to LOVE with all they have!! God bless you my AS sister Ella 🙂

    With much love and admiration,

    Rosealie AS FACE #770

    • Good Morning Rosealie,
      What an amazing blessing you are to the community! To use your sufferings to encourage others to goodness and love. WOW! While reading your “Face”-I see you have endured much yet still have hope and continue to persevere. You go Sister Girl!
      Give your Golden boy and your sons my well wishes and thank them for me for being such a blessing to their mom.

    • Beautiful Ella…this is my email hun rosealie73@yahoo.com hope all is well with you!! God bless you beautiful friend =)

  12. absolutely beautiful and well said. thank you it gave me a real smile both on the inside and out. i could feel your hug, strength, and warmth in your words!

    • Thank you Mary!! You have also given me a huge smile a hug from afar and words that strengthen me. I send this back to wherever you are with love!

  13. Beautifully written from someone that has lived and learned.Thank you for sharing that Janelle.

  14. Dear Janelle, thanks for sharing. The road to finding some peace in a life filled of pain is a long one. Alltaugh it doesnt cure anything It gave me back the power to build my dreams again. Your words are inspiring, May they give hope and strenght . Have à great day

    • Dear Gilles,
      Thank you kindly. And yes, you are absolutely right…the journey to peace is a long one. Somewhere on this road we are confronted with the oh, so freeing fact that we can have a choice with how suffering will affect us. There are bumps along the way as we get pulled away from our choice. But that’s just a rough place and we will get back to a smoother path eventually. May you continue to feel and walk in peace.

  15. Dear Janelle, Thank you for sharing your thoughtful and beautifully expressed emotions.

    wow, these words will live within me for a long time:

    “Our bodies may be inflamed but we will remain calm, cool.
    Our eyes may flare but we will not lose vision.
    Our dreams may be delayed but never forgotten.
    Our heads may bow, but we will stand straight, focused, mind to the heavens.

    We may suffer silently but we will not succumb…

    …Our bodies may be painful, but we are not pain.
    We refuse to become bitter, only better.
    We will not serve the disease, rather it will serve us…”

    Blessings,
    Rich

  16. Dear Rich,
    Thank you so much for your very honoring post. May these words continue to resonate in your soul and bring you peace. All of us are in a seemingly unending battle- if we purpose to allow the disease to shape us into better people, we will win the war in the end. Thanks so much again.
    Peace to you.

  17. Beautiful!

  18. A thought as we ponder our choices:

    “Goodness returns to goodness, ill intent returns likewise. You can’t plant onions and expect a peach tree.”

    -Janelle Gingrich-Caudle

  19. jan,you are so strong and giving. I wish I could be that strong.

    • Jimmy, You are much stronger than you think you are. You are also incredibly giving and kind. I’m proud that you are my brother and that we are such wonderful friends also. I love you precious! ❤

  20. Janelle if i looked back its been a long road that you carried me and never ever i remember that you are not there for me. You are so mighty strong and that big heart you have is enormous that you turn your pain into love.
    Without you i cant be able to find my lost skill to create and to be a real person. You thought me a lot of things in life. Thank you thank you thank you! God so love his children and he sent you to guide me!

    • Dear Ivanhoe,
      It’s my pleasure to watch you bloom to become who you’ve always been. Not only are you a treasure to me but you are an inspiration to the A.S. community and all who have the pleasure of meeting you through your paintings. It’s only the beginning- Love you Brother!

  21. This is an excellent resourse for A.S. WHat a beautiful concept showing the faces and stories of these precious people. My beautiful friend Janelle is one of them. She works tirelessly educating the public on this rare, often highly mis-understood disease. She painstakingly helps those who also share her illness, and brings hope and life to some across the globe! I hope everyone who sees this will be compelled to help! God bless you all.

    • Thank you Lynn! I am really just another face here. The creative hero of this site is Cookie Hopper. She gave all of us a face and a voice. She’s a blessing to all of us.

      Lynn, I thank you for caring about me for so many years. You’ve been one of the few who has been a supportive, listening ear. Friendship like this is never forgotten and is always appreciated. <3, <3, ❤

  22. Dear Janelle,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

    • Cookie, thank you for giving me a place to share my experiences and pain. Thank you for giving me a voice. Thank you for the voice you’ve given all of us. ❤

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