On this page we invite all avenues of creativity and expression from anyone who desires to share their experience of pain, transition, transformation, recovery, suffering, or whatever you can imagine that might invite others to think, feel, and integrate for themselves. All media will be considered: art, photography, music, dance, sculpture, poetry, prose - any digital expression that moves you. We hope to create a multi-media gallery that will be a powerful statement of empowerment and understanding.
Submit any digital example of your own creation (mp3 audio, youtube video, photograph, original art, etc.) to firstname.lastname@example.org We will review it (in order to eliminate spam), and place it here.
May 2018: A very personal poem by Jen N. "With gratitude to Dr. Echenberg for his endless pursuit in the alleviation of pelvic pain." Jen told us that this poem somehow is from a "dark" place, but we think it is beautiful, haunting and profound.
"The Immortality of Pain"
The cold logic of pain
Can more oft be found, in not the asking of why
But in the harshness of the why not
Bodies formed from dirt
Hungry to soak up the blood of ancestors
Tread on by the quiet brave
Carrying their dead, whose eyes remain open
We arrive in a burst of pain
Linked forever to the fires that scorched and blazed
from torches alighting a village
that no longer could contain its occupants
Searing skin and bone and hair
Until only charred ash is left to bear witness
Obliterated each into a unique grain of sand
Arrogance is rooted at the asking of why
A luxury of delusion
When the winds kick up with a whisper
Then curl around the deafening screams of our children
My name is Dillon King.I am 29 years old, married and the father of two boys ages four and six. In 2010 I was diagnosed with having Chronic Pelvic Pain. As many of you know it can be and usually is very difficult to cope with this debilitating illness. With that in mind Dr. Echenberg thought it might be beneficial to share this non chemical mechanism to cope with unrelenting pain.
My wonderful wife Christine is the one who first introduced me to Origami. She thought it may be a way to keep my mind busy and it quickly became a way to allay anxiety and often a way to distract me from severe pain.Because I wasn't sure I could follow written origami instructions I decided to look on you tube to see if there were any simple videos I could learn from. Jackpot! I started out making a simple crane, I paused, rewinded and stopped the videos often in order to memorize the models. I then cut one and a half inch pieces of magazine paper and put them in a empty altoids container so I could "make a bird" anytime and anywhere when I was in pain. The fascination quickly grew to the memorization of many models including:cranes,flapping birds,rockets, two styles of swans, jumping frogs, a wren, a rose, a lily and tulips. I've made models out of very small paper so that the resulting model is no bigger than an eraser head! The bigger the pain, the more difficult the model!
As time went on my folds became exact, the paper I chose had flair and the models became more complicated. Since then my origami has been on friends ears as earrings, at wedding receptions as favors, my origami bouquets have been given as anniversary gifts and even purposed with! I hope that this great distraction that has helped me cope with Chronic Pelvic Pain will be a way to make some money and help inspire others to creative ways to cope with their Chronic Pelvic Pain!
Click here to view a new artistic expression from Peg L. on her grief process. She describes her art below.
My Journey Through Grief
These drawings reflect my ongoing journey through grief. For the past seven years I cared for the love of my life, my husband, as he battled heart failure and bladder cancer. This past year, in the midst of helping my husband cope with end-stage heart failure I was stricken with chronic pelvic pain syndrome. Over the years as I dealt with the emotional and physical demands of my husband’s medical condition and then my own, I thought that I had developed an inner strength that would sustain me through any challenge I might face in the future.
I believed that until last December when my husband died and I met a stranger that goes by the name of grief. In the months following my husband’s death as I continued to battle chronic pelvic pain, I grappled with the overwhelming emotions of grief and the toll my emotions were taking on me - physically, emotionally, and psychologically. Words just didn’t seem adequate for expressing the journey I was on. That’s quite a statement for me because I love to talk and usually have something to say about almost any topic! Anyhow, that’s why I began drawing my journey. It is a way for me to express my innermost thoughts, sorrows, fears, and hopes as I travel along the bumpy road of grief.
One last thought…I give my heartfelt thanks to God, family, friends, Dr. Echenberg, and all the wonderful staff in his practice. They all have sustained and strengthened me through my journey. Without them, I’d still be staring at the wall.
Here was our first contribution from Donna Massa-Chappee from New Hampshire - Donna was the inspiration for this creativity segment on our website:
"A Solar Chart" Living with IC
Illustration by, Donna Massa-Chappee (2011)
Art Mediums: Prismacolor Pencils and Pen & Ink. IC or Interstitial Cystitis is a debilitating bladder disorder. It is when the protective lining that surrounds the bladder wall becomes deteriorated, resulting in urgency, frequency and pain. About 15% of reproductive aged women have this disorder and about 90% of them have associated pelvic and sexual pain." As a patient of Dr Echenberg and living with IC for sixteen years, I feel compelled to reach out to many of you. This illustration uniquely defines what it is like living with IC from the moment of realization, to it's diagnosis, treatments and finally through the many trials and tribulations of coping with this disorder. As you view this illustration you will find ones personal journey as it ties directly into the rhythm of astrology, it's symbolism and unity. Traveling through its cycles or wheel of time one finally arrives at internal peace of, mind, body and soul...
And another contribution from Donna Massa-Chappee: Original choreography and ballet representing her journey with Interstitial Cystitis
And here is our second submission: very creative adaptation of one of Dr. Echenberg's favorite songs and groups: "Comfortably Numb" by Pink Floyd
This creative karyoke piece by Amy Fretz was submitted in 2012. Here is Amy's description of how she came to submit this work:
Recently Dr. Echenberg mentioned to me that he was going to a concert by Roger Waters presenting "The Wall" - and that "Comfortably Numb" was one of his favorite songs:
The pain takes over, you lose your focus on everything else in your life.
It interferes with your job, your relationships with your family, and especially your partner.
I had seen many different doctors over the last 4 years for the symptoms, each looking at individual symptoms. It was like I was talking and no one was listening, no one was looking at me as a whole person, connecting the symptoms.
Then my daughter suggested I go see 'her doctor' telling me "You'll love him. He will listen to you and consider all your symptoms". I have to say I have a very intelligent daughter and she was right. I only wish she had suggested it sooner.
So, now I am a few months into treatment and am feeling better a little at a time. The relationship that has been suffering the most is the the one with my partner. We had not been able to be intimate without pain for the last several years, but I refused to stop trying. Its like I am trying to climb a mountain in search of the pleasure that used to be part of our intimacy only to be a victim of an avalanche of pain. More recently, I have been getting closer and closer to the peak of that mountain before the avalanche interferes. This is progress. I am looking forward to when I am free of pain and can enjoy a healthy physical relationship with my partner, as well as enjoying some of the things I used to be able to do with my children and grandchildren.
There are no words to express how much I appreciate what Dr. Echenberg has done and continues to do for me. With his help and the help of the medicines and physical therapy, I know I will no longer be on the sidelines. I have faith that I am going to be able to LIVE my life again and enjoy it.
Hello? Is there anybody in there? Just nod if you can hear me. Is there anyone at home? Come on, now, I hear you're feeling down. Well I can ease your pain And get you on your feet again. Relax. I need some information first. Just the basic facts Can you show me where it hurts?
There is no pain you are receding A distant ship's smoke on the horizon. You are only coming through in waves. Your lips move but I can't hear what you're saying. When I was a child I had a fever My hands felt just like two balloons. Now I've got that feeling once again I can't explain you would not understand This is not how I am. I have become comfortably numb.
I have become comfortably numb.
O. K. Just a little pin prick. There'll be no more AHHHHHHHHHHHHH! But you may feel a little sick. Can you stand up? I do believe its working. Good. That'll keep you going through the show Come on it's time to go.
There is no pain you are receding A distant ship's smoke on the horizon. You are only coming through in waves. Your lips move but I can't hear what you're saying. When I was a child I caught a fleeting glimpse Out of the corner of my eye I turned to look but it was gone I cannot put my finger on it now The child is grown, The dream is gone. I have become comfortably numb.
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