2020 IAES Virtual
Home of the AE Warrior™
What AE stole from Me
- AE stole…. My 21st birthday
- AE stole…. 77 days: locked up, isolated, in TERROR
- AE stole…. My long blonde hair: when I was held down and shaved
- AE stole…. My mind
- AE stole…. My job, my freedom, my home and house
BUT GOD…. Delivered me
My Family…. fought for me
A Doctor…. BELIEVED ME
Infusion Nurses…. gently infused me
IAES…. informed me
And now its time to take back that which AE stole from me.
Faceless is my name for this project because at the time of my release the Psych DR informed my family that
“I will get her back!”.
This threat directs every action we take until we can move out of state.
The reality for AE patients is: Drs’ who choose not to consider AE, have the power to lock AE patients away. It happened to me. The horror is beyond telling. Thank you IAES for empowering families with the latest research, the raw truth, and the courage to press on.
Once is such a little word
It’s a word that seems so simple
For once I was myself
Once I had some work to do
Once I was so much more
Once my memory was clear and now the best I can say is now it is poor.
So this little word means more to me
It isn’t small at all
This little word just shows you
how far and how hard my fall.
~Mari Wagner Davis
There is a rainbow of hope at the end of every storm
No matter what you go through in life, always have hope that better days lie up ahead. I have a younger brother with Autoimmune Encephalitis. He has suffered so much, yet he has remained so strong. He never gives up and tries to fight his battles with a smile. ~Ismael Al Sharif
Christine had a strong desire to turn to art a few months ago. She never had an interest before and discovered that she has a new talent for it that recently emerged since her diagnosis of HE/AE.
Behind the Mask
The zebra is a symbol for encephalitis and one of the symbolic meanings of a zebra, is that the zebra is an ally to anyone who has ‘earned their stripes’. Meaning, if you’ve lived a tough life, but kept your free-spirit – the zebra salutes you.
I became sick in early 2016 and spent six months in the Lady Cilento Children’s Hospital suffering from Anti NMDA Receptor Antibodies Encephalitis. I was hospitalized from July 3rd to December 28th 2016 and within the first 12 weeks of being in ICU and diagnosed with NMDA receptor antibody encephalitis, I had lost lost the ability to walk, talk and eat, drink and write, etc…I had to relearn everything through extensive rehabilitation. I also lost memory of some things such as playing my guitar, which I had played for 3-4 years prior to my sickness, doing my hair, my makeup and just things like that. I became delirious, hallucinative and extremely psychotic. Most hallucinations were absolutely terrifying, but some were not so harmful. ~Tahla Maxwell
A DAY IN THE LIFE
Have you ever wondered what a day in the life of a person with AMNESIA is like? Such a person might go to the BUTCHER shop to get something to cook for dinner later in the day. But, when dinnertime rolls around, they might open the refrigerator and wonder where that large POT ROAST sitting on the top shelf came from. The SENSATION such a discovery causes can be quite disturbing.
Or, they might go to the LIBRARY and SUBMIT a request for a cookbook to find a recipe for cooking the pot roast in the refrigerator. However, when they get home, they put the book down and begin to DECORATE the house for a birthday party that already took place two weeks ago.
They may subject themselves to the ABUSE of others by acting strangely at times. They may appear to be IDENTICAL to their former selves if one is unaware of their condition, but these strange acts are a SIGN that something is amiss. When you see such signs please treat them kindly.
A love letter to my brain
I’m not giving up on you. I’m going to stay strong and remain positive. I’m telling you this because it’s important to me that you not give up on me. I need you and you need me. I believe you have the power to heal and get us better. Something is happening and causing misfire and thats OK. Let’s work together to figure this out. I believe in the power of positivity and I’m going to stay positive for you.
Let’s do this.
I See You
(for our warrior parents)
I see you running your child to therapy when your friends are running their kids to parties and sports.
I see you slipping out of the conversation when your friends are all chiming in about milestones and school grades.
I see you constantly juggling appointments and meetings.
I see you sitting at your computer for hours researching what your child needs.
I see you cringe when people whine about what feels like petty things.
I see you spread thin but still going that extra mile for your family.
I see you digging for depths of strength you never dreamed of.
I see you showing appreciation to the teachers, therapists and medical professionals who serve your child with you.
I see you rising early in the morning to do it all again after another chaotic night.
I see you when you are at the end of your tether, hanging on for dear life.
I know you feel invisible, like nobody notices any of it. But I want you to know I notice you. I see you relentlessly pushing onward. I want you to know you’re beautiful. I want you to know it’s worth it. I want you to know you aren’t alone. I want you to know love is what matters most, and you have that nailed.
And on those days when you have breakthroughs, those times when hard work pays off and success is yours to cherish, I see you then too, and I am proud of you.
Whichever day today is, you’re worthy, you’re good and I see you.
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. ~Robert Sheer
The vacant feeling that comes over me when my wife talks about things we’ve done together or places we’ve been just a short time ago, but which are completely gone from my memory. A little over two years ago, I was diagnosed with LGI1 AE. With treatment, most of the physical symptoms are gone, but memory deficits persist. Sometimes it seems that all I have left is my photography (though I now have difficulty with operating my camera and editing software sometimes.) But I continue to take pictures, mainly in three categories: landscapes, birds, and art in nature. ~Kerry Jones
I am a Warrior, I am a Host.
I look at my Vein,
my Chosen Vein.
My vein that I protect like gold,
my vein that is the Portal for my
” Elixir Of Life “
I see my vein standing proud and resilient,
waiting to show it’s prowess.
I feel the needle inserted into my vein,
it is restrictive,
it is the boss in my chosen vein.
I see the lengthy tube as it’s connected to my chosen vein,
to transport the ” Elixir Of Life” around my body.
I hear the ” Chatter” of the machine as my ” Elixir Of Life ” courses through my chosen vein.
But my ” Elixir Of Life ” has a price I must pay.
The ” Elixir Of Life ” is my Warrior,
I am the host of a Rogue,
there will be consequences for me as they clash,
until all is quiet again from the Rogue.
I used a tree in the four seasons to present my disease.
The first tree is a “summer tree”. It represents my life before the disease. Everything was fine, looked good and I was full of energy.
The acute phase struck like an autumn storm: lightning, thunderstorms, strong wind, … Something inside me broke, just like the branch of the tree that breaks off.
The tree no longer has a grip on the branch, just as I no longer had control over my functioning. I lost my energy and I had a very difficult time.
The “winter tree” symbolizes the period of which I don’t remember anything. The snow is on the ground, but not on the tree because he is not aware of this. I was not there.
In the spring, the tree gradually comes back to life. The leaves represent the functions that have already returned, the blossoms are the functions that I still have to work on.
The broken branch symbolizes the functions that I have lost forever. ~Lore Champagne