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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

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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. 

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.  

 

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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.

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