Art for Arachnoiditis

Very few things compare to the naked vulnerability which develops after that sense of violation that comes from being harmed by somebody we trust. Arachnoiditis blows our soul-fortress away.

“It’s … difficult to explain. It’s … it’s like … I think it’s as though everyone has a small place inside themselves, maybe, a private bit that they keep to themselves. It’s like a little fortress, where the most private part of you lives—maybe it’s your soul, maybe just that bit that makes you yourself and not anyone else.” His tongue probed his swollen lip unconsciously as he thought. “You don’t show that bit of yourself to anyone, usually, unless sometimes to someone that ye love greatly.” The hand relaxed, curling around my knee. Jamie’s eyes were closed again, lids sealed against the light. “Now it’s like….like my own fortress has been blown up with gunpowder—there’s nothing left of it but ashes and a smoking rooftree, and the little naked thing that lived there once is out in the open, squeaking and whimpering in fear, tryin’ to hide itself under a blade of grass or a bit o’ leaf, but….but not….not makin’ m-much of a job of it.”~Diana Gabaldon via her character, James Fraser, in Outlander, Chapter 36: MacRannoch – Page 760

Later, to Claire.…
      “Yes?”
      “Ye know the fortress I told ye of, the one inside me?”
      “I remember.”
      He smiled without opening his eyes, and reached out a hand for me.
      “Well, I’ve a lean-to built, at least. And a roof to keep out the rain.” ~Diana Gabaldon via her character, James Fraser, in Outlander, Chapter 62: Absolution – Page 832

Although I didn’t realize it at the time, the photography & paper sculpture shadow box project that eventually became Still Standing was the lean-to I was building for my naked soul. ” Surrounded by these grief-ridden walls and painfully fettered to my limitations, each frame inside of that box is a pane of glass belonging to the window that the world tried to close against me. It is my window. Window to this soul and window to the world, I decide when it opens and when it closes. In the infamous words of G.W., “I am the decider.” ~Sheila L. Kalkbrenner, in Today is Friday, from Still Standing, Sometimes; the Art For Arachnoiditis Project Book.

Ask yourself, “What will give me shelter?” and while you are thinking about it remember, We, the community of Survivors, at the Art For Arachnoiditis Project will be your shelter because we KNOW and we are Right Beside You as you become your own comforting Angel. We will not go quietly.

For additional inspiration check out: Shelter Me ~ Joe Cocker, Shelter Me Lord~Tab Benoit, Shelter Me ~Cinderella, Gimme Shelter~The Rolling Stones

I believe ART is the best Coping Mechanism

HEALING ART ACTIVITY #20 ~ in 3D, create a safe place for that naked, vulnerable version of yourself that was exposed when arachnoiditis became a part of your daily existence. A blade of grass, a bit of leaf, the materials are up to you.

Here are some suggestions, remember~ It doesn’t have to be a house. Your shelter can take on any form that feels appropriate to you made from materials that suit your creative comfort zone, physical abilities and resources.

Some Ideas and Materials you might try: Play-Doh, Salt Clay , Sculpey Clay, Try Paper: How to make an easy paper house, Make a house out of paper, Origami House , Pop-up House Try Ginger Bread or Repurpose some Cardboard, Magazines or Phonebooks, Old Books

The individual definition of shelter and safety has an infinite variety of visual representations and imagery. What does YOUR safe place look like? I often have to remind myself that there is a fine line between confinement and shelter. So, in doing this activity in my mind I try to remember to create an opening, a crack for a window or a door with a latch that I can unlock to get out and open to permit others to come in.

Mixed Media drawing completed for the winner of the Multi-media house contest on the studio face book page. 2013 The offer was to award the winner a mixed media drawing of his/her favorite architectural structure. The winner chose this one. It is a birdhouse built on family land in memory of her father.

After you complete your project, Submit your Registration Form if you would like to submit it for the Art For Arachnoiditis Project on-line Gallery. Updates on Calls for Entries by Arachnoiditis Survivors will be posted on Sheila Kalkbrenner’s Patreon Page. .

Since September 2012 former Police Officer and Musician, Jack Pavlekovich, with the help of his family, has been struggling to survive.

Jack last performed live with his band and his daughter in September 2012, when he received an epidural steroid injection shortly before the performance. Jack had previously had back surgery to repair/manage an injury that he suffered in the line of duty as a Police Officer in South Bend. Although he had several epidural steroid injections which helped manage his back pain, eventually his condition warranted a neurostimulator implant in his spine.

He experienced some relief from this procedure. Eventually, the implant stopped helping. Jack again received epidural steroid injections to manage his pain. Although the first series of injections did not seem to have any adverse effects initially, the last two he received at OSMC in September 2012 were contaminated (at NECC) and he developed life-threatening Fungal Meningitis. 751 other people also received these contaminated products. To exacerbate the initial fungal assault; the neurostimulator implanted in his spine had broken and was actually pumping this fungus into his nervous system as well as his spinal fluid. After intense and expensive treatment including on and off treatments with voriconazole, an anti-fungal medication , from October 2012 to April 2013; he showed signs of improvement with an all-clear for fungal presence in the spinal fluid.

However, all of his symptoms resumed shortly after he had completed the voriconazole treatments. He was sick off and on for months. Doctors could not figure out what was wrong. His chart stated that the fungus had been cured. Finally, in March 2014 a Beta d Glucan Assay was conducted. Jack and his family were informed that he was the third one to be RE-INFECTED with the fungal meningitis. He was put on a different anti-fungal medication, Itraconazole to fight it. Jack has spent a great deal of time in the hospital and in ICU. His spleen had to be removed as a result of this attack on his body.

Over the weekend, I had the honor of meeting Jack and his family for inclusion in the Arachnoiditis Survivor Portrait Project. After coming face-to-face with death, Jack and his wife Tammy strive to resume stability for their two children, Ashlee and Jamie. As a result of this preventable near-fatal illness, Jack and Tammy expressed concerns that the girls, “have had to grow up too fast.”

Witness to their father’s painful and debilitating experiences, each of them is attempting to find a way to cope.Behind her lovely smile, Ashlee seems to have developed a quiet strength which permits her to keep her own counsel about her fears while offering an arm to assist whenever she can.

Writing and illustrating her own book about their story, Jamie has turned to art as a means to describe this battle to others and allows her bright sense of humor to ease the weight of this reality.

Jack and Tammy have replaced “date night” with Doctor’s appointments.

Researching complex medical information pertaining to Jack’s case and faced with very tough decisions about: his care, the financial realities associated with this combination of insult, illness, and injury, and how she can keep her family strong, Tammy, who is coping with some stressful medical concerns of her own; continues to seek answers . Sep 20, 2014

For Jack, it is painful to see how this affects his family. He knows his children are always looking for the father they know is in there somewhere. With so many variables churning around his medical outcome, it is difficult to reassure him that he will find new ways to be an active participant parenting his children. Illness and injury of this magnitude elicit a daily , moment-by-moment fight to inhabit an injured body and a wounded soul attempting to walk in the land of the living while we dangle our digits over the precipice of the grave. Grace is scarce. Time is limited. Anger is abundant. Hope is fragile.

Recently, Jack was informed that this fungal infection in his spine has resulted in Spinal Adhesive Arachnoiditis in his neck and the L3 to L5 levels in the lumbar spine. Faced with the pain and isolation of this double whammy of medical injury, Jack says that his Family, their cat-Hailee, His Music, and His Computer are the things that keep his interest and help him to not give up. Jack has asked that these elements be represented in his Conceptual Portrait. The portrait will be shown in progress on the Art For Arachnoiditis Facebook Page and displayed in the public art Exhibit to increase Arachnoiditis awareness. Jack will receive a free copy of the drawing to keep.

It is expected that Jack and his family will always have to monitor, and sometimes seek treatment, for signs of a recurrence of the fungal infection. Now, Jack and his family will also have to learn to navigate the ins and outs of living with Arachnoiditis. Litigation promises some level of financial assistance however, any compensation award distributed by NECC will have to be divided among the 750+ people affected by the injurious, contaminated products in these spinal injections.

The neurological injuries and extensive medical treatments he has endured as a result of this infection have damaged his vocal cords and make it difficult for Jack to play his guitar or remember the notes and order of the music. A long time musician and performer in the band, Chantilly Lace, Jack misses creating music and sharing it with others.

I believe healing can be found in the arts. Perhaps there are adaptive methods, tools, or equipment that will permit him to play again when he is ready.

~Sheila L. Kalkbrenner