Welcome to International Autoimmune Encephalitis Society’s
First Annual Virtual Art Show
In recognition of World Encephalitis Day February 22nd, 2019 Celebrating the 6th annual World Encephalitis Day (WED)
Robert had no ability to draw prior to AE. He was only able to manage stick figures. However, in his unique case of anti-NMDAr encephalitis, he experienced what his neurologist refers to as 'an awakening' of artistic talent that when he discovered it much to his surprise and shock, was as advanced as someone who had been studying art and art techniques for many years. Robert's gift continues to improve. "My story begins like many other warriors of Autoimmune Encephalitis. August 2015 was the start of this rough journey as I was hit hard by Anti-NMDA Receptor Encephalitis. It took about a year of hospital admissions, doctor visits and constant mysterious symptoms to finally get the diagnosis. Since then it has been quite the roller coaster with medicine regimens, treatment plans and pain. During this journey, with the help of my amazing girlfriend, I discovered art as a great form of therapy. I had no idea that my dysfunctional brain could give me relief in the midst of all the physical and emotional pain. Something as simple as a pencil and paper has opened up a whole new world to me. I often tell people that this disease turns our lives upside down and it is our job to figure out how to live on that upturned world. Art definitely has helped me in that process. I couldn’t draw to save my life before this disease, but with time and practice I have been able to see the fruits of my labor. So if even for a short while during the day, I can travel to a place in my mind where Anti-NMDA Receptor Encephalitis doesn’t exist. Hope you enjoy my art!"
~ Robert Sheer age: 45
*Antibodies attack the brain flagship*
"My mom suffers from anti NMDA receptor encephalitis and I am one of her caregivers."
~ Tim Crossley age: 14
*Alvin The Cat*
"As a painter in my free time (pre disease), I enjoy painting watercolor portraits. This painting was the last painting I did before my dramatic spiral into the world of autoimmune encephalitis in May of 2018. This painting is the first painting I’ve ever done in acrylic, instead of my usual watercolor. It is the first time I had ever used such vivid colors. It is so striking and different than my usual soft paintings and to me, it represents my start into the world of hallucinations I was about to fall into. The subject is my cat, Alvin, who has been my best bud for nearly 11 years. My 3 months in the hospital was the longest I had ever been away from him and it was extremely hard, especially because I did not have the mentality at the time to understand what was going on and why I was there. One thing was a constant throughout my disease, and that was my concern about my cats. I asked about them non stop until I fell into the coma and then I picked right back up when I woke up! During my coma, my family hung up this painting in my hospital room and when I finally woke up after the removal of the tumor I was able to muster up the words to tell EVERYONE who came into my room about my handsome cat named Alvin! Our reunion was very emotional and we’re very happy to be back together. Big shout out to my little sister for giving Alvin his insulin every day while I was “out of commission”. I’m a painter, photographer, cat whisperer, gamer, minimum wage worker. I was diagnosed with Anti NMDA Receptor Encephalitis in May of this year. I almost lost my fight a few times, but thanks to my family doing their own research and fighting very hard for my treatments, I am still here. I have had to relearn how to do nearly everything from walking, talking, moving…eating… eating was the fun part after having a feeding tube for so long. I am still recovering and I cannot paint, yet, but I am still working on building my hand strength. So right now I enjoy going on walks with Alvin when I have the energy and annoying him whenever I have the chance."
~Haley Williams age:27
Those pictures is from the chaos and panic to the status when the drawing is back! Amanda was diagnosed with autoimmune encephalitis GAD65 in April 2018. Amanda has always been a positive girl and great at school and in sports. She is also a good artist and loves to draw and paint. But this disease is so horrible it has taken all of it away from Amanda. This picture was drawn at the beginning of her illness. It was the first picture she managed to draw after the first major attack of her autoimmune encephalitis. This artwork contains so much emotion. She didn’t need to try to verbally explain anything to us, which was a struggle for her. So without her having to talk, we understood what she meant through this art. Now long after this was drawn, Amanda’s health declined, and she became much worse again. She couldn’t draw properly after that. Yet now we hope it's about to turn again. Today she has started drawing again. She is a real fighter. We know we have a long journey ahead. Our hope and the emergence of Amanda's art keeps us going that days full of promise are ahead.
~ Amanda Svensson age: 15
*I am Unstoppable*
This photo was taken of my niece greeting a Santa Barbara, California Sunset. It spoke to me. So I have used it to help express my feelings about having autoimmune encephalitis.
~Tabitha Andrews Orth age:61
*GOD IS FOR ME, NOT AGAINST ME*
"Sometimes this disease makes me feel like I am balancing on the edge of a cliff where the only place to go is down. It can be unbearable. But I know that God is there for me. His hands are stretched out ready to hold me or catch me. It gives me hope when there seems like there is none." Randy Grim was diagnosed with antibody negative AE in May of 2018, when he was 15. The previous
2 months were spent in various hospitals, visiting several doctors, and even being placed in a mental hospital (due to being misdiagnosed). He has had ups and downs, good days and relapses, in the course of his disease, but he remains hopeful that one day he will be a normal teenager and get back to school where he was a honors student and a great athlete. He dreams of being able to play his guitar or read again without getting fatigued, and can’t wait for that “one year mark” of being seizure free to get his driver’s license. While many days he wants to be in denial of his disease, he and his family want the AE community to know that life is not over, there is always hope, and the “new norm” is just another complicated part of this adventure we call life.
~Randy Grim age: 16
*Tears"
Tears for all that he has lost!
“The brain now malfunctions. All brain functions can be compromised: emotions, psychosis, memory, cognition, problem solving, speech, movement, seizures, balance, visual, processing, planning, sensory, hunger, thirst, behavior and personality traits.” AE Alliance
~Team Fledderjohn
*Self portrait of an AE Warrior*
"I like the irony of the fact I have an invisible illness - behind my normal, healthy looking exterior hides a Zebra. But in this artwork, the Zebra covers part of my face, almost as a reminder that while the Zebra is there and still very much a part of my life, I am still in here, I am more than just "sick". This illness doesn't define me, but it is all consuming I was diagnosed with Anti-NMDA Receptor Encephalitis in 2016 after having strange symptoms for about 5 months (starting December 2015). I am at the 3 year mark now, and still receiving ongoing treatment (monthly IVIG, monthly IV methylpred and daily cellcept, and had 2 rounds of rituximab in September 2018). I am still positive for antibodies so still actively fighting this illness but I am determined not to let it beat me or take away my positivity despite an ongoing struggle with lots of symptoms. Before I got sick Art was always my escape and something I loved you do. Since being sick my skill, style, choice of medium and subject matter has changed dramatically and I find it much harder to create art now. But with the support and encouragement of IAES I have been drawing zebras as a way of processing all my emotions and putting and picture to my symptoms. I hope that my Zebra art is helping to raise much needed awareness of this illness, and is hope it helps other AE Warriors to smile when they recognize the emotion or symptom I am describing in my
art, and helping them to feel less alone in this battle."
~Julia King age: 34
*Broken Hearted*
"When I went into psychosis, I was put on a psych hold for 16 days without a neurological evaluation. I was being streamlined for a court hearing to be legally committed. My husband hired an attorney and got me out. On a few occasions, I was allowed out of isolation. This art expresses how I felt. It is difficult to share as it causes me to remember the horror of it all. Became dramatically sick in 2013 at age 55 with no history of psychiatric or neurological illness. Experienced psychosis, catatonia and brief coma. Diagnosed 14 months later. Has been in recovery for two and a half years. Dedicated to spreading awareness of autoimmune encephalitis, Tabitha is one of the co-founders on International Autoimmune Encephalitis Society."
~Tabitha Andrews Orth age: 55
*I Love you a Latte & Giraffe*
Maya is an active teenager dedicating much of her time to dance since age four, and dancing competitively for the last 9 years. In her free time, she loves to write and draw, spend time outdoors swimming and running. On September 1, 2018 she experienced two tonic-clonic seizures, this was the first indication of any serious issue. On October
9 she had a lumbar puncture to test CSF, and on October 24 the test results confirmed a diagnosis of Anti-NMDA receptor encephalitis. Between October 9 and December 10 Maya has undergone two rounds of IVIG, two rounds of IV steroids, PLEX, and two rounds of Rituximab.
~Maya Poziomka age: 14
Rocks painted for our local rock group. Shaylee was diagnosed with anti NMDA receptor autoimmune encephalitis February 26,2016. She now is currently fighting Gastroparesis, epilepsy, hashimotos, immune deficiency, migraines, low magnesium and calcium
~Shaylee Maier age: 11
*If only AE was a dream of the night*
It came like a thief in the night
Creeping in unexpectedly
While I lived my life
It came to steal my memories
It failed to take them all
It snuck past my security system
Turning it against myself
And when my brain finally raised the alarm
Some of me was already gone
And now I live a twitchy life
Always being on guard
While I try to gather up the pieces
That it left behind
I am an AE survivor, who now finds one of the best ways to express myself now as a poet( and no I didn’t have this talent before I got sick) ~Mari Wagner Davis age: 55
*How to Stay Happy When Your Godmother is Going Through Chemo*
The piece is a written expression of the first moments after I found out that my Godmother was being treated with Chemo for something we couldn’t identify. After a while we discovered that it was AE, and I took to studying as much as I could, because I was afraid. It’s about dealing with that fear the only way I know how, the way my Godmother taught me to.
A poem follows the piece, detailing the first moments after I found out about my Godmother’s chemotherapy session.
Alva Tobias is a self-published author hailing from the beautiful sunsets and soul shaking winters of Northern Nevada. His joy of creating things combined with his passion for understanding blend together with varied interests to create fiction work firmly rooted in faith, but willing to ask large questions and toy with possibility. He takes inspiration from the likes of science, religion, and meaning and uses them to tell a story about the fight between light and dark, and what those concepts truly mean to man. The fictional world he’s created has become all consuming, and ever expanding, where curiosity and faith have become his strongest allies. www.linmtba.com
~Alva Tobias age: 25
While I’ve gotten to the point where I appear normal to people around me, this is the world that I still feel at least part of my mind inhabits.
I am a retired chemist, environmental engineer and bookseller living in Excelsior Springs, MO, just outside Kansas City. I love photography, and it’s about the only hobby I am able to continue in my current condition.
On returning from a trip to California in the spring of 2018, I had lost almost all my memory, not only of the trip, but of most of my life. I began having seizures and other symptoms, but fortunately made my way to the Mayo Clinic in Rochester, MN and was diagnosed very quickly with LGI1 autoantbody encephalitis and treatment was started in August. Doing better but realizing I have a long way to go. ~ Kerry Jones age: 69
*Good times during bad times*
My mother has AE , there were many trials on how to handle this. This piece represents a time when I took her to the hospital for treatment. Although we had better places to be, this was a necessity. We found a silver lining in these bad times by being with the ones you love and a simple game to pass the time and make this venture a little more fun. Tyler is the adult son of a person with this dreaded disease. I have seen the destructive affects this can cause. I have also seen times of improvement. My heart goes out to all those dealing with this disease, both the affected and non-affected. As for me, I am standing up for AE.
~Tyler Wilson age: 34
*Lost Memories*
Created this piece as a way to express what it feels like to struggle with memory changes and memory loss, it feels as though my memories are like missing files in my brain. Some memories are fuzzier than others, some are completely missing. Dedicated to my fellow HE/AE warriors. Maddy Boehme is a 21 year-old who was diagnosed with Hashimoto’s Encephalitis at the age of 16. Due to Brain Injury caused by the disease, Maddy has become more of a visual thinker/learner than she was prior to being affected by the disease. Through therapy she has learned to work with her new brain’s strengths and struggles. She has developed a passion for graphic design and uses her passion to express her struggles with HE.
~Maddy Boehme age: 21
~Samantha Slaughter age: 12-14
