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

All to survive September

by Celeste Noelani September 22, 2016 5 comments

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 badly to believe in those wayward and wrong explanations. But.

Getting the confirmation that the mass on my sciatic nerve is indeed a tumor and indeed pointing towards an official diagnosis of NF2¬†forced my hand. I’ve got to look at all of those clues and come to terms with what they mean.

I don’t go to the neurologist for two weeks. Two weeks! And that’s just the initial; we won’t have imaging or action plans until well after that. I live through September in limbo.

September has always been the cruellest month. Last Saturday was the twenty-sixth anniversary of my dad’s death at forty-six. He had been paralyzed for three years. I am a year younger than he was when he became a quadriplegic.

Anyway. There’s that.

This Sunday is the seventh anniversary of my son’s stillbirth. The boys whose passing forced me to seek treatment for the lifelong depression and suicide ideation that had encapsulated¬†me of the first thirty some-odd years of my life. In the wake of his death I have come to live more fully, with more love for myself and the whole wide world I live in than I ever thought possible. And now.


Tomorrow is my brother’s birthday. My brother, whose birthday has so often come with the heaviness of loss. We forgot his tenth, all of us. Completely. It was my Uncle Tommy who brought a birthday card to my father’s funeral and chastened all of us absolutely without meaning to. And then, for his twenty-ninth, I called during his birthday dinner to tell my mother that I was losing my son.

September has not been kind.

This past weekend we took my daughter to the park to fly a kite and stare into lapping waters of Puget Sound. Well, she did the flying. I stared, of course, thinking of what I knew then. What I thought I knew. What I feared.

And then I breathed, salt air and love and preciousness and the feeling that there is never, ever enough.

I will survive this month. I will manage and figure out everything I need to do right now. There are battles ahead. So many, I know. But right now, in September, I sit with surviving. I can do no more than that.


image of rocks on a beach log overlooking Puget Sound at Carkeek Park in Seattle, Washington.


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Lauren September 22, 2016 at 3:37 pm

Abiding with you, my friend. Love you. xo

Ashleigh September 22, 2016 at 6:36 pm

Present here with you. <3 <3

Celeste Noelani September 24, 2016 at 11:56 am

Thank you so much. <3 <3 <3

W. Lotus September 23, 2016 at 1:34 pm

You will survive, and I will keep loving you.

Celeste Noelani September 24, 2016 at 11:55 am

You are a continued blessing in my life, W. My world is so much better with you in it.


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