Celeste Noelani
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Celeste Noelani

Aloha Aku | Aloha Mai

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Neurofibromatosis

BlogEssays

Another Day, Another Tumor. Maybe.

written by Celeste Noelani

If I was hoping for some kind of vacation – even temporary – from pain after surgery, my nerves had other ideas. Just a few weeks after coming home from the…

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May 22, 2017 4 comments
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BlogEssays

Three Weeks Without My Tumor

written by Celeste Noelani

And so, it is gone. From the moment I woke up in the recovery room, I knew the procedure had improved my life. And with the giddy rush of Dilaudid making the absence of…

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April 18, 2017 0 comment
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BlogEssays

My Body Is Not A Good Body

written by Celeste Noelani

From my bed I hear the sounds of our usual family chaos. My daughter gallops across the living room floor, shaking the ceiling above me. There are downsides to a basement…

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February 10, 2017 7 comments
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BlogEssays

On the Enormous Privilege of Being a “Good” Patient

written by Celeste Noelani

It was hard not to let myself get carried away with pride when my Physical Therapist gushed over the progress I’ve been making. She noticed that my legs weren’t shaking in…

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January 13, 2017 2 comments
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BlogEssays

Genetics, Dr. Google, and Various Stages of Hope

written by Celeste Noelani
Google search for advancements in Neurofibromatosis type 2 treatments

People keep telling me to stop Googling NF2. To stay positive and maintain hope that my sciatic tumor is just a one-off deal that isn’t linked to my dad’s condition. For now…

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September 28, 2016 7 comments
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BlogEssays

A Measure of Comfort

written by Celeste Noelani
Blue sky with clouds covering the sun

I hear her whispering in the middle of the night, her breath tickling the back of my neck. “Mommy,” she says with a catch in her voice. “Turn around and cuddle me.”…

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September 26, 2016 4 comments
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BlogEssays

Possibilities

written by Celeste Noelani
photograph of fantastic figures, which were produced from plastic using 3D-printer

It is absolutely possible that the nerve sheath tumor on my right sciatic nerve is isolated, completely unrelated to the condition that ultimately took my father’s life. I know we’re…

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September 24, 2016 0 comment
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BlogEssays

All to survive September

written by Celeste Noelani
rocks balanced on a beach log, overlooking Puget Sound at Carkeek Park in Seattle, WA

Real talk. I knew I had my dad’s condition. There were so many clues but they were explained away or outright dismissed by (sometimes shitty) doctors and I wanted so…

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September 22, 2016 5 comments
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BlogEssays

Pain.

written by Celeste Noelani

Yesterday afternoon, my doctor called with results from the two hours I spent in the MRI tube on Monday. It’s not good news. I have a 3.5 cm tumor on my sciatic…

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September 21, 2016 6 comments
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BlogMemoir

Why Am I So Afraid of the Dark?

written by Celeste Noelani

I wake up in the dark and know I am on my own. Grandma’s bed has been moved into the dining room where she can be close to Dad when everybody…

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April 25, 2016 0 comment
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