May 28, 2019
I am Sheila L. Kalkbrenner, U.S. Army Veteran(1987-1991), NYS Certified Teacher (BFA~2001,MSEd~2002), Arachnoiditis Survivor (2007), ACCORD EAP Participant (2010), ACCESS-VR Small Business Grant Recipient(2011), Artist (Always) & Studio Owner (2011), and Advocate for the Prevention of Spinal Adhesive Arachnoiditis.
An introduction to my story as it was,Thanks toPain Exhitib.org, with my painting, Honesty & Hope (a.k.a. No Pain, No Gain) featured as the Cover (withEssayp. 194) in Volume 28, Number 3, 2014 of The Journal of Pain & Palliative Care Pharmacotherapy...advances in acute, chronic, and end-of-life pain and symptom control.
"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 thesummer 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 be 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 in Upstate New York."
In 2014, I began the Art For Arachnoiditis Project to Empower Fellow Arachnoiditis Survivors via participation in the Arts.
The Art For Arachnoiditis Project is a Charitable Project of SheilaLynnK Art Studio to Empower Fellow Spinal Arachnoiditis Survivors via Participation In the Arts,nowfiscally sponsored by The New York Foundation for the Arts, as we promote connectivity, healing and coping tools for Living With Arachnoiditis while increasing the scope of Public Awareness and Prevention. This mission generates artwork and facilitates a Creative Voice which Educates the Public and Increases Awareness of this preventable medical injury. It provides an opportunity to participate in a safe creative community to develop sustainable skills for Independent Creative Wellness and Personal Productivity while providing the public with an opportunity for more insight into the necessity of Adaptability and Reasonable Accommodations in the work place for concealed persons with disabilities which would otherwise confine them to a marginal existence.
Frequently an adverse outcome of medical procedures, arachnoiditis is commonly concealed from the general population as well as front line medical providers. General practitioners are not trained to recognize its signs and symptoms, to monitor patients for it following administration of known risk factors in order to implement a treatment protocol to minimize permanent damage, or to be able to identify it on medical imaging studies after the injury has occurred. This is considered the “accepted average standard of care.” Currently, the legal system protects the physicians and manufacturers.
Increasingly, medical procedures are the Primary cause of arachnoiditis. Currently, there is no protective measure in place for the patient. As survivors develop tools to help them Thrive while Living with Arachnoiditis; the Art for Arachnoiditis Project facilitates the growth of a Publicly Accessible creative voice to: Reduce the number of people inflicted, Inspire Empathy and Essential Preventive Measures, Improve Reasonable Accommodations in the Workplace, and Increase Awareness of the support and resources required by those living with chronic pain and permanent disabilities like Arachnoiditis.
[ABOUT ARACHNOIDITIS: Arachnoiditis is a spinal cord injury frequently caused by the neurotoxins in spinal injections and invasive spinal procedures as well as, degenerative disc disease, trauma, infection, and other vestigial or disease related spinal anatomical anomalies which result in inflammatory processes in the subarachnoiditis space. MORE ABOUT ARACHNOIDITIS] This permanent disability impacts the lives of the Survivors and their Families.
Under-recognized, Under-reported, and frequently misdiagnosed, there is no cure for spinal arachnoiditis. As this is most often the result of patient harm, arachnoiditis is not publicized, patients are seldom warned of this potential adverse outcome, and front line general practitioners are rarely trained to identify it. More often than not, it is hidden from the patient and the public... Leaving patients to fend for themselves after the fact. [It took THREE years of first living with resultant UN-DIAGNOSED chemical meningitis and subsequent spinal cord damage before I found a specialist who was willing/able to determine the cause and develop an appropriate treatment plan.Some Survivors have been searching for 5-7 years or more for adequate management of this crippling medical injury. ] Although the National(U.S.A.) Fungal Meningitis Outbreak of 2012 caused by Epidural Steroid injections did shed some light on this distressing adverse event, the number of Survivors living with this debilitating and preventable injury are increasing daily. Friends, Family, Care Providers, Employers, and Medical Practioners have very limited information on how to meet the needs of this population. The Art For Arachnoiditis Project developed in a way that it became a process that uses arts education and therapeutic methods to Empower these Survivors...resulting in art that helps them learn and to heal while communicating their needs during that process. Subsequently, the art that we created (and are still creating) and the way in which we share it; has become a method to educate the public to increase: the Resources Available to Survivors, Awareness about this controversial topic, Prevention of this unnecessary medical injury, the Means and Necessity of Adaptability for Survival, (Including a hands-on Independent Adaptive Art Activity workshop) and the tools to educate the Survivors and the General Public about the value of the Arts in Life and the Healing Process From hospitals, to colleges, to art galleries;The YEAR 1 Survivors' Art Exhibittoured Upstate New York from April to December 2015. Watch the Video ofthe Exhibit at Houghton College. (The informative art begins around the 3:30 mark.) The Art For Arachnoiditis project began with one-to-one Survivor Portraits which became informational videos of these portraits in progress .Arachnoiditis Survivor: A Portrait of Resilience Against Patient Harm In America (2014-2015). Now, more than 247 Survivors from around the world are Registered at the Art For Arachnoiditis Project. There are still thousands out there who could benefit from the resources provided here.
The Website I created for Survivors, artforarachnoiditis.org, provided information to 93 countries in 2015 (WordpressReport2015). I am currently working to obtain funding that will help increase the focus to the above described populations in a way that will allow us to set a new precedent for Arachnoiditis Education and Prevention. My injury was actually caused by a NYS Workers Compensation Board approved physician who was protected by "expert testimony" of a physician who testified that he had no prior knowledge or experience regarding this condition and, due to a lack of accurate information and open communication about the causes of Arachnoiditis; the Appellate Division of the NYS Supreme Court stood by the decision not to acknowledge or compensate the injury. I am only one of many living under the effects of the efforts to conceal this condition in the interests of financial gain/protection for those who stand to benefit from the status quo. There is truly an abundant lack of knowledge about how to prevent it and how to manage it after the medical injury happens. At the Art For Arachnoiditis Project, we are working to change that. Senator YoungandThe Arachnoiditis Society for Awareness and Prevention have acknowledged the public value of the work being done at The Art For Arachnoiditis Project. (More testimonials.)
YEAR 2 resulted in artwork which allows the Survivors to Come together and to Express their Creative Voices regarding the Adverse Outcomes of Patient Harm. Featuring the Year 2 Survivors' Song Entry, "Needles" by Brock Babcock, husband of Arachnoiditis Survivor, Michelle Babcock; you can watch the most-recent project video here.
A Member of the Wellness Universe, as I move forward with theYEAR 2 Survivors' Art Exhibit opening on April 30, 2016; I am also working to obtain funding to expand the services offered to include improvements to site accessibility and a new Creative Wellness Program Initiative.
With adequate funding, The Creative Wellness Program of The Art For Arachnoiditis Project will include adaptive learning methods for Survivors to make healing Awareness Art while exploring holistic wellness activities. In accordance with my Year 1 message: “Art + Adaptability = Healing”; the Creative Wellness Program will provide Survivors with the opportunity to observe, record, reflect, and make art based upon:
the ways in which Nature must Adapt in Order to Thrive individual needs/strengths assessments and outcomes of Adaptive Adjustments personal discoveries from their Adaptive Journey through Survival to Thrive individual perspectives developed while exploring holistic wellness options
Building on knowledge gained in my Wild to the Pantry Photography series and Via diverse genres (i.e. Living Art, Painting, Photography, Music, Film/ Video, Creative Non-Fiction, Illustration & Design, Book Arts, Jewelry Making, Sculpture, Fabric Art), an introduction to Sustainably Creative Organic Art Supplies (i.e. fabric dyes, watercolor, soaps, face/body paint), and an introduction to Basic Art Marketing for those who would like to pursue it; the Creative Wellness Program will provide Arachnoiditis Survivors with an opportunity to find their creative voice and to participate in a safe creative community while developing sustainable skills for Independent Creative Wellness and Personal Productivity.
It is my hope that as the project grows, it will expand the Resources for Existing Survivors, as well as, Prevent anyone else from being subjected to this medical injury.
Thank you for reading my story.
~Wishing all of you a low pain day.