Select Page
The Episode

The Episode

November 25, 2021 | By Diane Wong

On this day of Thanksgiving in the US and in honor of Caregiver Awareness month, the staff at IAES wish all of you a blessed and thankful day!

We are honored to share with you a poem written by a very special caregiver of one of our members. The poem is written by Diane Wong, the mother of AE warrior Alanna Wong. This poem highlights the depth of love and despair caregivers feel on our behalf… Alanna’s AE went undiagnosed for many years until 2021.

She wishes to connect with others travelling this same path and shares her journey on Instagram @alanna_wong and on Facebook  @AlannaWongLife1

—————–

The Episode

 

Today my daughter lost her soul.

There is no emotion.

There is no understanding.

There is only sham rage.

A rage she does not control but

that controls her.

It is directed at me only because

I care for her.

If she were alone, it would be directed

at thin air.

I love her with my entire being.

 

Today my daughter sleeps.

The sleep is not restful.

The dream is a nightmare.

It lasts for days, or weeks, or months.

Life for her is lonely.

Life for her is cruel.

She is a prisoner in her own mind.

Can you imagine the torture she must endure?

I love her with my entire being.

Today my daughter is swollen.

Her face and eyes are puffy.

Her pupils are dilated.

Her sclera is yellow.

Her tongue is thickened.

Her body is bloated.

Her color is gray.

Her heart palpitates.

She cannot care for herself.

She is vacant.

She is distant.

She is unsure.

She wonders, “Am I dead or am I alive?”

“Is this real, or am I dreaming?”

Her short-term memory is destroyed.

Her relationships are destroyed.

Her life is destroyed.

I love her with my entire being.

Today my daughter asks, “Why was I put on this earth?”

She says, “I can’t do this anymore.”

“I don’t want to live.”

“I want to die.”

“I want peace.”

“I want to be in heaven with God.”

Tears roll down my face too!

I can’t answer her questions.

But I continue to give hope.

“It will get better,” I say

“It will go away one day.”

“You will live the life you desire and deserve.”

I love her with my entire being.

 

Today my daughter went for help.

The hospital staff makes assumptions.

How can the medical field not understand an organic illness in the

Brain is no different than an organic illness in the heart, or the

pancreas, or the lungs?

They ask, “Why are you here?”

“There is nothing we can do for you.”

Then they call social workers in.

If we’re lucky, my daughter won’t be committed.

I can care for her better than any psych ward.

What a shame!

I wonder why they’re even in the

business of helping people.

I go home to care for my daughter alone.

Isolated from the world.

I love her with my entire being.

Today my daughter begins life again.

Her soul returns.

She is young, maybe 3, maybe 5, maybe 10.

She’s cute and sweet.

She’s funny and mischievous.

She’s loving.

Her emotions return.

She can care for herself again.

She can read again.

She listens to music.

She is waking up from this long, awful nightmare.

I love her with my entire being.

Today I hear the words, “Mom, I’m awake.”

My sleeping beauty returns.

The words are bittersweet.

Sweet because we know she’s back with us again.

Sweet because she can live again.

Sweet because she can function again.

Bitter because she’s lost her memory.

Bitter because she lost more time.

Bitter because she lost herself.

Some memories come back in flashback form.

Which itself is torture.

In healing comes pain.

But we’ve already been through so much pain.

When will it end?

Maybe this will be the last one.

I love her with my entire being.

Happy Thanksgiving FB 500x419 - The Episode

Click here or the image below to subscribe to our mailing list :

subscribe - The Episode

Your generous Donations allow IAES to continue our important work and save lives! 

guidestar platinum logo 300x300 1 e1605914935941 - The Episode

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - The Episode

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - The Episode 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Giving Thanks!

Giving Thanks!

November 26, 2020 | By Jeri Gore

I have often pondered over this day throughout my life. From being with loads of family laughing over a huge turkey dinner and all the talk and smiles and analyzing whose stuffing is best and simply being together. To being away at college or jobs that have carried us off and unable to return home for Turkey day. I have thought about those with less and those with more. Those with illness and those in seemingly perfect health. Always and I mean every single time I have found thanks. This is not to say, I have not felt a twinge of ‘wow, where am I now’ but true and honest thanks because at every turn I have learned something, and I am grateful for it. I like to separate the word Thanksgiving to Thanks and Giving.

This has been a year like no other. This can be said for each year I realize, and many many generations have crossed bridges and had years they can say this for. For us, at this point in time, this has been a year of highs and lows like I, for one, have never seen or heard.

I would like to Give Thanks to all of you at IAES. I am an AE Warrior and have newly been introduced to a group of people across the continent and globe that have had a hand in helping me get to this place where I am this year. This organization has helped not only me but my family, loved ones and caregivers. I want to say and give thanks to IAES. Thanks for your guidance, virtual smiles, endless conversations (at all hours) with my husband regarding ‘what the hell is happening to Jeri’ and offering to simply be there at every turn. From my heart, THANK YOU all! There are many others that feel this same way.  I have the distinct honor to express the feelings of many here. Happy happy Thanks and Giving…..

~Jeri Gore

Thanksgiving 2020 500x419 - Giving Thanks!

 

Your generous Donations allow IAES to continue our important work and save lives!  

guidestar platinum logo 300x300 1 e1605914935941 - Giving Thanks!

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

 

Trivia Playing cards 3 FB 500x419 - Giving Thanks!

For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

 

AE Warrior Store 300x200 - Giving Thanks!

 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

It is the Season When We Give Thanks

It is the Season When We Give Thanks

Barbara Layt Vujaklija | November 28-2019

No matter the origins in your part of the world, during the autumn or early winter there is usually some sort of harvest or thanksgiving festival. A time for people to share the earth’s bounty with friends and family and gather together to renew and strengthen the bonds we share.

Growing up in England I remember being paraded from school across the village street to the local church which was decked out with bales of sweet-smelling hay, turnips, parsnips, carrots and all manner of other foodstuffs (both fresh and canned or purchased), plus magnificent late flowering plants. The church was filled with the earth’s splendor and the folk of the village. We elementary school children dressed in our best took our place in the choir stalls. After the sermon, we were to sing a few songs that expressed everyone’s thanks for the bounty before us. The foodstuff was later distributed to the poor of the village.

Since coming to live in America at the age of 20, I have discovered a new way of giving thanks to the earth’s bounty and family and friends.  I have found the customs of Thanksgiving here in the USA to be comforting and enriching.

What am I, as someone with Autoimmune Encephalitis, thankful for?

I am thankful for my improving health, and for my family who has stayed beside me during my trials. I am especially thankful for my son-in-law and daughter who came to live with us to be my caregiver. Thanks to Toys-for-Tots and local food drives, I still have the satisfaction of helping those less fortunate than myself.

Here, at the International Autoimmune Encephalitis Society, we asked members what they were thankful for.  Their responses are below:

Thanks for understanding

For this Thanksgiving, I am a warrior who is thankful for my husband, my family, my neighbors, and IAES. These people know that despite having AE I still have a lot of knowledge and am an intelligent woman.

I am so thankful for everyone at the International Autoimmune Encephalitis Society, they help me to feel that I will make it through this, my husband who has learned to deal with my poor memory, my family who supports me, our awesome neighbours and everyone in this world who has learned in one way or another that disabled people have so much to offer.   – Mari Wagner Davis

 Thanks for loving and listening

I am thankful to have a loving kind man that has been with me every step of the way and helps me cope every day. I am also thankful for my best friend who listens and talks to me about anything and whatever I need.  – Katherine Crow

Thanks for life and a new me

Life ?? Thankful to still be alive and getting the chance at the new me. We all know the outcome could always be worse with this disease. Happy Thanksgiving.    -Dayna Burns Rudy Munoz

Thanks to the Lord

For Thanksgiving, I want to say I am very thankful for the Lord being present with me and carrying me through a three year battle with AE. Especially when I was hallucinating in the psychiatric hospital, thinking everyone was plotting to kill me. He gave me a peace that I would survive and be OK. And I was.
-Wayne L. Wall

Thanks for hope, life, love

I am thankful that despite everything I can still have some semblance of a normal life, that my husband still loves me and cares for me despite everything, and I still have hope, love, life, my children, husband and the best of my friends and family in my life. I’m thankful that the chaff has been able to be cut away, so I can enjoy and wholeheartedly love those who are genuine in my life.
-Cathy Bolton

Life and smiles

I am thankful that my son did not die when he first got sick. He was very close. I am thankful that he was given a cheerful, strong and enduring spirit that touches the lives of so many he knows. I am thankful for his smiles and that he always compliments people and wants to care for them. I am thankful for the opportunity to enjoy the gift of every day and the ability to live a full life with him. Happy Thanksgiving!
Lora Strange

This group

I’m thankful for finding this group because many of my questions have been answered here. Also because I don’t feel like a strange person anymore.
Michelle M. Caamaño

Caregivers

I’m thankful for my husband and son who are also my caregivers.
Amy Underwood-Crossley

 

Make a Comment below to share what you are Thankful for

Thanksgiving Musings AE Warrior 300x300 - It is the Season When We Give Thanks

Your generous Donations allow IAES to continue our important work and save lives!

seal - It is the Season When We Give ThanksBecome an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

why zebra 300x173 - It is the Season When We Give Thanks

 

A Thank You Note From a Teenage Son to his Family

A Thank You Note From a Teenage Son to his Family

November 22, 2017 | Patrick Morrison

On the fourth Thursday of November, the United States celebrates Thanksgiving Day. As we ready to gather with friends and family and reflect upon this past year and the blessings it has brought, we at International Autoimmune Encephalitis Society felt that there was no greater or more poignant expression of thanks than a letter a young member wrote to his family recently.  We are grateful to Patrick for giving us permission to share his letter with all of you.

It reads: (SEE BENEATH IMAGE)

To Mom, Dad and Aine,

I cannot express how thankful I am for you guys helping me with my medical situation and with my school work such as studying, multiplication and for tests. If it were not for your perseverance to diagnose me and get me well, I would likely be in a much more troublesome state than I currently am. As much of a handicap infusions are, they also get me better and more healthy. I would like to thank Aine for chugging along through drives to Little Rock, Springfield, and Rochester. She didn’t choose to go on them, so I enjoy her support. Her support has been a pillar of stability through these harsh times. While at times my life has been a living nether, it is my one and only life and I may as well enjoy it while it lasts. Your continued support is much appreciated. From, Patrick      Nov-6-17; HE

Happy Thanksgiving to All, From IAES

Art by: AE Warrior, Julia King

Your Tax deductible donations help us save lives and quality of lives.

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

Translate »