Our first Art Exhibit will feature Art By Spinal Arachnoiditis Survivors. Although the entry deadline has passed for work to be included in this April 2015 exhibit, it is NEVER too late to submit your Survivor Story and/or art to be included in the Art By Surivivors collection here. All entries received after the Feb. 15, 2015 deadline our reserved for consideration in future exhibits.

2014-2015 CATEGORIES: Arachnoiditis Survivor Portrait Project, Arachnoiditis In Real Life (digital photo series), Art By Survivors (see the slide show on right side of our Home page) and Art For Sale By Survivors. Survivors’ Stories are still being accepted for use on this website and for consideration in future project publications.  See the 2014-2015 Categories Registration Form for additional details and instructions.

We continue to receive and accept entries for the Album of the Survivors and/or the Map of Survivors.

Not sure what kind of art to make? Although you are never under any obligation to share the results, Healing Art Activities are a good way to begin making art. It would be an honor to share your process and outcomes with the world.

We are especially interested in seeing what you make of Healing Art Activity #20.

ANOTHER EASY WAY TO PARTICIPATE:

Do you have a bunch of these and don’t know what to do with them? Want to support the project but not sure how to contribute? Send your empty, clean (ORANGE w/ WHITE LIDS) script bottles to the Art For Arachnoiditis project at Sheilalynnk Art Studio with a slip of paper inside the bottle saying, “I am an Arachnoiditis Survivor” or “End Arachnoiditis Now”(if you do not have arachnoiditis). We will re-purpose them into art. [PLEASE BE SURE TO REMOVE ALL LABELS/NAMES/ID info]  

These bottles will be utilized in the completion of a NEW Arachnoiditis Awareness Art project being assembled at SheilaLynnK Art Studio for display in the NEXT exhibit. [Date, location, and CALL FOR ENTRIES TBA]

 

THIS IS JUST THE BEGINNING. HOPE YOU WILL JOIN US ON THIS JOURNEY.

 

UPDATE : THE PRESCRIPTION BOTTLES WERE USED IN THE PUBLIC EXHIBITION INTERACTIVE INSTALLATION TITLED: “Limited Liberty”

Watch the video

 

This artwork and story were first licensed to Pain Exhibit.org to promote Arachnoiditis Awareness in 2013. Started in 2010 and completed in 2012, the 36″ x 36″ acrylic painting on stretched canvas was featured in the first video of the 2014 AIM|Hatchfund campaign to raise funds for the Arachnoiditis Survivor Portrait Project at SheilaLynnK Art Studio.

This painting was also displayed on a Sprint jumbotron digital screen in Times Square as part of the Art Takes Times Square 2012 campaign via Artists Wanted and has been featured in American News Report National Pain Report.September 2013

This last piece in the Facing Phases Series(2009-2012) is dedicated to fellow adhesive arachnoiditis patients and the support networks that keep them going.

The Story: 

Honesty & Hope (a.k.a. No Pain, No Gain)
This painting is a self-portrait of my adaptation to life with arachnoiditis.

I was a healthy, active, productive member of my community. I was a teacher, youth advocate, and artist. I have been a single parent of three amazing children since 1994.

In March 2007, at the age of 37, I had a routine right knee arthroscopy to correct an established work-related injury. During this procedure I was given spinal anesthesia which contained 5% lidocaine, w/dextrose and epinephrine (xylocaine). My knee healed well. In the weeks that followed the procedure my coordination and balance began to deteriorate. I began having excruciating pain in both ears. I could hear everything. I had persistent nausea and developed perpetual positional headaches. These headaches were relieved only when hanging upside down over the side of my bed. I had to lie down on my office floor to continue my work obligations. I managed to do this through the
summer months but eventually was forced to take a medical leave of absence.

The left side of my face and body began to go numb. My left leg would give out unexpectedly. Sometimes I couldn’t tell if my foot was touching the ground. Other times it felt like I was walking on thistles in my bare feet. While sitting at my desk it felt like my leg was laying in a puddle of ice water.

I was diagnosed with gastroparesis of unknown origin. I developed painful muscle spasms in my extremities. Painful spasms around my shoulder blades restricted the range of motion in my arms. At night I would wake up unable to move them at all. I developed persistent pelvic pain, abdominal pain, and constant pain through my left ribcage. By November of 2007, I could not walk from my front door to my car without assistance. Too much time in a vertical position resulted in bowel and bladder dysfunction. The crippling headaches induced vomiting. My legs would not hold me up. I developed sacroiliitis/sacroiliac joint dysfunction. This causes pain and inflammation in the back of the hip joints and pinches the sciatic nerve.

I lost my job. I could no longer maintain my three story house or take care of our beloved epileptic golden retriever, Lily. We could not find anyone else willing to take on that responsibility. She had to be put down. I was physically unable to stop the neighbors rescued Rottweiler from tormenting my daughter on the way home from school when it got loose. I was unable to stop those dogs from killing our cat, Sophie. My children were finishing high school and I missed out on the majority of that process.

Local practitioners were unable to solve the mystery of my symptoms. Finally, in 2010, I received a conclusive diagnosis. The specialist told me that I had spinal adhesive arachnoiditis in the lumbar and thoracic spine. My early symptoms were apparently caused by effects similar to chemical meningitis. The anesthesia used in my procedure was not FDA approved for spinal use. It left significant nerve damage and scarring in the thoracic and lumbar region of my spine. This scarring had obstructed the rotation of cerebrospinal fluid. It was pooling in my lumbar region and thoracic region. It had formed a pseudocyst which was displacing the spinal cord in the thoracic region (in between my shoulder blades). There was not enough fluid around my brain. This had caused significant bilateral trauma to the nerves in my ears. There was scarring in the tip of my spinal cord from a needle that had penetrated the conus. Spinal anesthesia is NOT guided
by fluoroscopy. I was told that there is no cure for this condition. Subsequent diagnostic procedures: spinal tap, epidural blood patch, and radionucleide cisternogram had added to this injury to my spinal nerves, spinal cord, and central nervous system. My body now interprets cold as pain. I was informed that there is no cure for this condition.

The specialist deemed me permanently disabled. Vocational Rehabilation determined that I was unemployable. For the rest of my life I will have to lie down every three hours to control spinal fluid levels. I use an inversion table every day. Opiates do NOT relieve the nerve pain that I experience. My children and I relocated to a much smaller, single story, home about two miles from the pain management clinic. Accommodations learned there permitted me to regain some range of motion and some strength in my lower extremities. Time management has become a crucial part of my adaptation to life with arachnoiditis. Art and horizontal time spent with my infant Grandson healed my heart and mind. Being Honest, every Hope and every Gain is tainted by the knowledge that it will be accompanied by pain, ALWAYS.

I am currently working with vocational rehabilitation to meet my self-employment goals in my live/work studio space.~sheila l. kalkbrenner

 

  We join this project already in progress…

 

Hanging on to summer as long as I can, such as it is in upstate New York this year, I have been spending as much time as possible outside, away from my computer, as much as I can. 

Although I have not worked on it since May 2014, I have resumed working on it with intentions to complete the drawing by September 1st…in time for the Wellsville Art Association Annual Member Show.   I am not an expert in the use of colored pencils. I am enjoying exploring this media. 

On a more personal note, this image has become a composite of multiple characters and sacred geometry & colors which influence, empower, and reflect me on this journey into the world of arachnoiditis.   I explored this symbolism during the Root:30 Day Journal Project with Lisa Sonora Beam and The Mandala Project from my show Around Now In A Square Time.

The Platypus is a new totem which represents a new dimension of the character of the person I am now.

The Arachnoiditis Survivor Portrait Project has been designed to permit me to make composite drawings of other survivors. Using imagery of traits, characteristics, and interests, these portraits will depict an image of the person NOT the “patient”. When I have accumulated what feels like enough of these drawings, I will host a public exhibition to increase awareness and prevention efforts. The collection will become a portrait of what it means to live with arachnoiditis. Hopefully, this will take place some time in 2015. 

My first interview is with an Arachnoiditis Survivor in South Bend, Indiana. He is also a survivor of the 2012 Fungal Meningitis Outbreak. I am looking forward to meeting him and hope that I can do justice to his story. ~Sheila L. Kalkbrenner