The KLS Episode

My mom wrote the poem: “The KLS Episode” when KLS was at it’s worst for me. I hope this helps!

The KLS 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 dreams 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’s 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 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 her self

Some memories come back in flashback form

Which is itself 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.

 

By Diane Wong

Goodnight KLS! from April; USA

The following photo is by: April

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/ 

Thank you, April for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! From Wong’s; Hawaii

The following photo is by: Diane, Melinda, Kaia and Randy

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, to the Wong’s for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Ehrick; Mexico

The following photo is by: Erick

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Ehrick for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Hurley; USA

The following photo is by: Hurley

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Hurley for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Bentley; USA

The following photo is by: Bentley

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Bentley for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Emelie; Sweden

The following photo is by: Emelie

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Emelie for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Randi; USA

The following photo is by: Randi

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Randi for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Mat; USA

The following photo is by Mat:

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Mat for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Mary; Canada

The following photo is by: Mary

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Mary for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

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