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
Art For Arachnoiditis 
I have it.
Your painting ‘honesty and hope’ is one of the most brutal and uncompromising paintings I have seen. I saw that painting and I knew you knew the alternate world where people are sent – the loss and unreality.
As I risked everything that painting scared me, because I knew what it meant. But I am there or on my way now to whatever is further anyway. There’s no return.
I can’t understand how someone who paints something so brutally honest engages in all the wellness pamphleteering and support groups. I honestly don’t get it. The painting is honest, so surely the rest is not. But perhaps this is just community.
There’s lyrica. It’s worse than the pain, for what it does to your mind and soul. But they won’t pension me friend, so I must sleep.
I know we all need to make a buck.
Take care
Chris,
Both are an honest representation of my Arachnoiditis experience. Being “brutally honest” I have been living with it since 2007 and all of the junk that goes with it. I have gone to the Dark Places…and still do…BUT, in that dark and gut-wrenching abyss at the beginning of it all; ONE kind soul who had never met me was willing to respond to me from across the miles with genuine compassion and MORE importantly, very valuable information… She flashed a teeny spark of light into that uncompromising existence. For that, I will be forever Thankful. Part of what I do here is to pass that same spark on to anyone else who may need it…in case they are feeling as abandoned as I…
In the years since…I have experienced tremendous light in my life which I probably appreciate and notice much more than I would have done before…
Everyday, I work toward developing Wellness for Myself. Due to the chemical sensitivities which developed after the onset of arachnoiditis; I can’t handle most prescription drugs….not gabapentin, not lyrica, they have even tried amitriptyline… savella had life-threatening consequences for me…opioids bring zero relief for the nerve pain…even commercial hygiene products can trigger a “flare”. So, I make my own …I have arachnoiditis in the lumbar and thoracic spine…with numerous associated consequential issues…
So, I have to find other ways to manage this incurable Thing that ATE MY “REAL LIFE”.
For the sake of my own Survival I MUST recognize the value and quality in the life that I am LIVING RIGHT NOW. I call what I am doing “Creative Wellness” simply because I don’t know if there is another name for it. If it exists somewhere already; I haven’t found it. When I am searching for answers and googling away as the population does so often now and find NOTHING there that will meet my needs, I am compelled to transform the knowledge I do discover with by merging my experiences with skills that I already have…into something that works for ME.
Useful or NOT; What kind of person would I be if I didn’t share those discoveries in a way that gave other people…other arachnoiditis survivors, access to it? …Simply on the off chance that someplace in the midst of that spewing out of trial and error ONE of Them will find the relief that I, too, so often crave; I keep sharing what I find.
Unless you count the ones that the practitioners pass around to avoid blame; There are no “bucks” in this endeavor….
I have yet to see the project break even or come out of the “red” when it comes to the actual numbers.
Although I am just managing to keep up my mortgage payments; I go without certain material things that most people my age assume is their right to own in order to make up the difference….because, in this Experience; I have discovered those THINGS don’t really matter at all. If I am in too much pain to get out of bed or the sound of another voice feels like somebody is stabbing freshly sharpened pencils into my ears; does it really MATTER if I can afford a car or a television?
Emotionally, spiritually, and physically; what I do here in my studio helps ME to improve My quality of Life in ways that financial abundance alone COULD NEVER do…because I KNOW that MONEY WON’T CURE ARACHNOIDITIS EITHER.
On the Horrible days I CANNOT indulge in the attributes of this project.I simply cannot be bothered with anything more strenuous than taking breath.
On the Less Horrible days I ask myself, “How can you really keep investing your limited resources in a thing like this? WHY are you taking the time to do this? Nobody reads it or cares!” …and then something like the “Threads of Hope” Survivor quilt happens and I see how, for some people (including myself), this project facilitates the means to personal wellness as it ignites a spark and burns a small crack into the isolating pain-filled walls of this debilitating experience.
So, some days I move through a solitary tolerance of my existence…other days I celebrate the minute embers of hope….BUT, MOST OF THE TIME…whether alone or in community…I have made a conscious choice to Engage …I engage in my pension-less LIFE because LIFE means something to ME. From Stabbing Pain to Brief-But-Sublime-Relief…I share that LIFE with those who want to participate in it. Because LIFE is precious and too-too-short and I don’t want to waste another minute of it.
As the Art For Arachnoiditis YEAR 2 Survivors Art Exhibit Opening Reception came to a close today, I was asking myself again…”Why do it?”
Now, I see that the structure and schedule WILL change…because it simply must… to allow for my limitations but, for now…I need to keep doing this.
Thank you for pushing me to come up with an answer to that question at exactly the right moment.
Wishing you a low pain day.
~Sheila
Well I assume there is a pension of some sort, even if they use a different name for it over there. If you are managing to work with debilitating insane nerve pain, zero neuropathic medication (so extreme pain then), meningitis symptoms and limited CSF flow with all the symptoms that brings (incl the need to lie horizontal every 3 hours) that would be quite astounding.
I get that you’re trying to bring some light into the world, and that brings a healing energy and vitality. And yes that is an important mission. And yes life is precious, and short.
It’s good art. Especially that painting.
Regards
And I wasn’t really having a go at you over it. I just think differently about things, and what it means to help.
I suppose your answer has given me some insight into how you think about it, and what it means to you.
Wishing you a low pain day.
Like the rest of the Survivors, I am doing the best I can with what remains.
Doing odd jobs since age 12 and Employed since age 14,excluding a short period of time after giving birth to each of my children and again temporarily unemployed after relocating after my divorce… I paid into the Social Security System. When Arachnoiditis forced me to stop working at the age of 37, this system provided me with a disability allowance which is approximately ONE THIRD of what my earned income was at that time.
I took my medical injury case to the Appellate Division of the New York State Supreme Court.The compensation case lasted about six years. (As a resource; That case and story is available as an Independent Publication of the Art For Arachnoiditis Project.) At the end. they chose to “not disturb the decision of the workers’ compensation board pertaining to compensation for consequential spinal adhesive arachnoiditis.” meaning NO Compensation would be awarded.
Because my case was an unprecedented one and the system still allows similar procedures to occur; to do anything else would have left the state liable for other spinal cord injuries and applications from numerous other injured workers.
As a U.S. Army Veteran with a permanent disability that was caused by a civilian physician approved and protected by the New York State Worker’s Compensation Board, I later received an economic hardship pension of $133.00 per month. Clearly not enough for ONE person to live on…and definitely NOT enough to support three children getting ready to graduate from high school….[who were working part time after school but, not yet financially independent]
This is why, after being deemed unemployable; I was forced to set (and achieve) self-employment goals with the assistance of physical and vocational rehabilitation resources to make and sell my own art from my own studio using self-designed reasonable accommodations. This is also why I continue to work toward my own wellness on a daily basis. Some days I am more successful with that than others.
I don’t know how the “system” works where you are from. Though Disappointed with some aspects of it; I still Love my Country and I believe in still providing a service to the residents here; I am truly thankful for the ability and the space to make art and to be learning the ancient wisdom of the wild abundance around me which has become a significant buffer against the the lack of solutions or relief in the modern medical world and the lack of material/financial compensation after patient harm here in America.
[The Art for Arachnoiditis Project does not generate any income for me until or unless some of the grants that I have applied for come through and the artist’s stipend portion of the project budget can be paid. Since March 2014, $65 of the stipend has been paid to me. You may not be able to read it on a smart phone …I don’t know. I don’t have one… but, more about the project budget and links to the income/expense report are here: http://sheilalynnkart.com/artwork/4000653-Expense-Comparison-YEAR2.html ]
~Blessings and Wishing you a low pain day. May you find some comfort in your day.
Ok I get it.
It’s obviously your passion and are a strong believer in wellness philosophy.
Take care and good luck.
I’ll add that it makes no difference if I have a smart phone or not. I do for now, but I wont forever.
You picked up arach through spinal anesthesia. Which means you missed all the associated morbidity when it is acquired through the usual route of failed back surgery. Which is as bad and worse than arach itself.
You don’t take the drugs. Yet somehow you manage to sleep. I don’t hear any talk of the gross sleep deprivation and the insanity that brings, and being forced on a drug regime which is as brutal and debilitating as a severely damaged spine is.
So what that means is you aren’t as bad as others. Which is how it must be. Others are worse off than us, others better off.
Ending up on a third income on disability is a lot worse than being undisabled and living how we were meant to, but better than the usual solution for many of us. No pension. If you didn’t have CSF issues you’d be denied the pension, and sent back to work.
Like everyone else, it wouldn’t work. The story then is no pension, no work, society pretends you aren’t disabled when you are.
Fun times, but that’s how it works, more so when the incompetent bastards disable you at a younger age and walk away, lying to themselves to avoid moral culpability and a sense of guilt, leaving your future and ability to support yourself and a family in ruins. There’s no real humanity, in how the system works. It is despicable, really. But it’s how we choose to live, and treat our neighbours, and even friends. We treat our friends most cruelly of all. Which is just a fact; unfortunate as it may be.
Good luck with your project. Seems like it’s going ok.
I cannot afford to consider what others think now, one way or the other. It won’t help me, to consider their judgements. In fairness, they generally have no idea.
Goodbye
Chris,
I know you are struggling and that your struggle is different than mine. Thank you for sharing your experience here. It is my sincere hope that each survivor might be comforted by knowing that they are not the only ones trying to figure this out.
I cannot say it often enough, the struggle with arachnoiditis is different for each one of us. There are so many variables involved. The above story is an introduction to my case and not intended as a comprehensive description of how arachnoidits affects me or anyone else. The project is not in any way intended to send the message: “this is how you SHOULD live with arachnoiditis” or as a solution or cure. It is simply MY way of handling this.
My path changed so much when I stopped looking for validation from other people and just started appreciating the things I was able to do. We can be as empathetic or sympathetic as we are able to but, No matter the illness or injury; it is simply not humanly possible to FEEL or experience the sentiments or pain of another person.I had to stop expecting people to understand and accept that they won’t.
There are a lot of things I used to do, that I cannot do anymore and/or cannot do in the same way. I have found other things or changed and adapted my approach to doing the things that I love as often as I can. My way of doing things is not necessarily the right thing for everyone. Each of us must find our own way to still see the value and joy in our lives. For me, sometimes these things are well hidden but, they are there.
Over time, I have learned to accept and manage the symptoms and consequences, including the gastroparesis, perpetual nausea, AND sleep deprivation, in the best way that I can. Some days this is more successful than other days. [Sometimes there simply is no sleep. I have come to accept that, for me, it is okay to be awake. This isn’t the appropriate approach for everyone but, it has relieved me of a great deal of stress. I do other small things instead of trying to force myself to sleep and instead of getting angry about the lack of it. Sometimes meditations practices help me to rest my body and mind even if I can’t actually sleep. But, not always. I haven’t found anything that ALWAYS helps.]
Not uncommonly, because of extremely unpredictable chemical sensitivities caused by arachnoiditis that were discovered during the struggle to find a diagnosis and all of the prescription meds that the physicians tried to use to treat my symptoms; I have had to find organic ways to manage all of this. For me, the drugs make EVERYTHING in my case worse without providing much-if any- relief.
Consequential CRPS (also not uncommon for arachnoiditis survivors) has increased my need to take great care regarding chemical exposure and avoidance of many types of foods. In addition to learning more about indigenous plants as food and medicine; I am currently avoiding artificial products (inclduing pharmaceuticals) as much as possible and sticking to an anti-inflammatory menu to help maintain some level of productivity and pain management in my life. This is what is helping me. That does not mean that it will be effective for somebody else.
Vocational rehabilitation has deemed me unemployable because of the many accommodations that would have to be made by an employer. These are considered “unreasonable” accommodations. So, I worked with them to be as independent as possible in my own space where I can Reasonably (as-possible) accommodate this situation. It isn’t perfect.I am simply thankful if my other art work (done in between my focus on this project) generates enough income to allow me to make more. I am still slowly paying off the debt that accrued while I was waiting/working to get some form of compensation for this injury. I will probably be paying on that for the rest of my life. As you say, it is the nature of this life. There are days that I really HATE my financial limitations…my earning potential was once so much higher than this. But, I cannot change that…at least not yet and maybe never. So, again I have to focus on what I CAN do.
It’s not the original dream that I had for my life but, I have created a new dream for myself and am slowly working to make it a reality. Things rarely go as planned nor as FAST as I would like them to go. I get frustrated and depressed about the obstacles just like everyone else. I have to frequently remind myself to NEVER compare my life to anyone else’s life. Comparison is a potential path to depression that destroys my best intentions.
As survivors we are forced to be creative in finding ways to make a better life while living with arachnoiditis. My work in the arts has given me great comfort and shifted my perspective regarding what I can control and what I cannot. For this I am always Thankful.
Because of the way my case evolved, I have been able to speak out about Arachnoiditis and do a little bit of work to increase awareness through my art and this project within the boundaries of living with it. Because of my efforts here, this year, the governor of New York State declared July to be Arachnoiditis Awareness month. It won’t cure the people who already have it but, it is a small step toward appropriate care and prevention for those who don’t. Nobody here knew what it was when they were trying to figure out what had happened to me. Now, they do.
During Year 3 of the project I am offering some new projects for survivors. If you are interested in them; you will find them in the “Healing Art Activities” link in the list at the bottom of the page.
~Wishing you a low pain day blessed with passion-worthy inspirational moments.
Sheila
Oh Sheila, I know all that.
I went into the initial surgery after working myself to disability and like all of them, familiar with what real pain does to people. I always knew no one can ever understand someone else’s pain. I wanted it to go away or become manageable pain so I could share my life with my friends.
I suppose what I ultimately objected to was people denying the reality of my circumstance, and attacking me in place of that.
I met the one I would have married, and another. For the insane revision operation I had to put a gun to my head and pull the trigger. Against all the odds it worked, and I fought through all the shit at work and death threats from the parasites. Against all odds I made it.
I waited 6 months until I trusted it to hold steady, then I opened up my heart to the world again. Someone fell in love with me pretty well straight away, and when the process of becoming disabled due to nerve damage this time started again a few months later, of course I lost all that.
What I struggle with is why my friend who had had a stroke attacked me when I went to pieces, because I knew internally I was done and the chances of coming back from a 3rd operation are very low, accusing me of being self destructive etc etc, every foul and false indictment under the sun. We were close friends. Because I told her how it really was for me when I broke down.
Simply because it was easier to hurt me, kick me in the guts as hard as they could, and that way I’d just slink away and never come back. My old man did the same. ‘Have a nice life’ straight after the original op, and his preference was to enter me into psychological care to ease his guilt. Only saw him 3 times since the original operation, on the 3rd I slapped him across the face after his brothers funeral. That’s the only time I ever saw him look at me and think. I am not proud of it.
Lauren asked me to wait for her and I did. Waited a year. I had to rehab myself from a fusion and artificial disc replacement so I could fight my way back. I had no idea that I had been disabled by a callously and obviously botched operation at 28, in the end all I knew was something was wrong. I found her again in the end, but I wish I hadn’t. The phone was enough, and she heard me. But I loved her with all my heart, and would have gone to hell for her without hesitation. I just needed her to hear my voice before I could let go. I think I was trying to hang onto my old life. When I met her, it was still so recent, and it was all there to be had, if only I could stand up. But I also could never explain what happened between us, and what could have and probably would have been if I wasn’t disabled.
I suppose a couple of years after that I ended up in court, due to this friend. Someone who would’ve been a mate for years, but who genuinely didn’t give a shit that I’d become disabled after fighting through 5 operations. Maybe after keeping that friendship alive through so much shit, the insane revision, while I was being threatened with being bashed after the by scum and staring them down when a physical confrontation risked my future, maybe after all that I just finally stopped caring when she dragged that shit into my life, after I said goodbye and take care after the 3rd op. Which worked for a few months. I think when that failed, then I really just stopped caring in some fashion. All that shit for nought, and to end up in a worse situation, where my ability to support myself in any job is basically extinct.
So it’s easy to judge me, and you must, as I know now this is how the world works. I will never trust a friend again in that same way – where it is just friendship and that’s all it is. I am no longer able to. I suppose the first time I let all my friends go, as I loved them and they let me go. Lauren just blew threw everything. The second time I didn’t want to go through it alone again. Of course I had to – but people are funny like that. They reach out sometimes when they are drowning. I knew the friendship would end. It is the way of the world. It’s the hatred I struggle with.
Things were good for a few short months. I just wanted everything to stop changing for a bit, while I was there, and had some friends and my dog and much more than anything a future, and I mean a real future. You can’t tell me any and every person who has had cause to look at this website wouldn’t give their left arm to be genuinely physically cured, and there’s a reason for that.
Now I have to go through the whole process of becoming disabled again. I can’t sleep. They won’t pension me. It’s simple math. I know life doesn’t exactly become dreamy once you stop taking the drugs, but lyrica is no normal drug. Mild side effect in that it makes people suicidal and crazy. Pretty common to have ‘bad thoughts’ they reckon. One day I will stop taking it, and be in my body again.
So it’s not so much my pain, it’s just the world that I struggle with and what is in it.
My answer to that originally was to build and they would follow, and they did, and there would have been a family one day, but that’s all gone now.
Anyway. Thanks for providing a considerate response.
Take care, Sheila.
Chris,
You are right. Permanent disability is a life-changing, deal-breaking, heartbreaking, and mind altering experience…I suspect even more so when it feels like it was a thing that was done to us as opposed to something that “just happened”. Not only must we re-define our own identity; but we must re-define our perception of our value in the world while we are re-defining the worth of the things we once considered necessities but can no longer afford. Usually, all of that is happening at once. Add the Burden of Proof to that package and we are unable to think about anything else.
It takes an extremely phenomenal person and some serious intestinal fortitude to be able to keep up with somebody going through it. It can be very lonely as it pushes us into the margins of society. Sometimes, we even want to abandon ourselves.
I have lost count of the times I have said or felt the need to say, “Goodbye, good luck, I understand, if I had the option to leave; I would, too.” …painfully letting go of them and finding it somewhere in my heart to forgive those who simply couldn’t do this thing with me.
As a result of those experiences, although the pain of the loss remains…I have found the best friend I have ever known. Myself. I have come to accept and love the good and bad things about myself in a way that nobody else could ever do for me. So far, this is the most empowering aspect of my survival.
As much as I wish I had found one; I cannot offer you a cure.
In sharing my own coping tools and keeping a space for others to do the same; I offer recognition and acknowledgement for your pain and the struggle that comes with it. The struggle is real. There is NOTHING easy about it.
I do also hope that there is something here in these pages that allows a little bit of light to get in through the cracks of our brokenness. In pulling my pieces back together; I have become a whole person in full awareness of the power of my own spirit.
I still sometimes compare my life Before with my life Now…and I still sometimes compare what could have been with what is becoming but, my feelings about those comparisons are changing.
My LIFE is now.
I can’t let those comparison become the black hole that they used to be. I have slowly come to understand that reality cannot compete with the ghosts of the past or the foggy future. To continue to place too much merit on those comparisons sacrifices what energy I have to maintain any quality of life right now.
Instead I must ask myself, “What productive/healthy/safe thing can I do to make myself feel good right this minute?”
Sometimes the answer is to just do nothing…to simply allow myself the space and time to be still in the position that is the most comfortable for me without any guilt or regrets about what I “should” be doing instead.
Other times, there are glimmering itty bitty things, tasks or experiences that bring me joy, that may seem very small to other people but, turn out to be a big deal for me. Very recently, it was simply pushing myself to bundle up and sit on my front step in the December sun just so that I could savor its light and warmth on my face for a few minutes. These are the gifts I give myself.
I hope you find the big-deal-small-things that shine for you, too.
~Sheila
P.S. I just took a class this year based on a book called, “Living a Healthy Life with Chronic Pain.”by Sandra M. LeFort, RN, PhD Lisa Webster, RN Kate Lorig Halsted Holman David Sobel Diana Laurent Virginia González Marian Minor [May 1, 2015
Bull Publishing Company].
Although, there were some things in the book and the class that I had already found out the REALLY hard way, I truly wish the resource had been available for me eight or nine years ago.