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?
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,
North Carolina, United States of America