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as of 4/2/14, this tumblog will be dedicated to my process of coming to terms with my own death. all posts before then were made by a different me.

Smiley face

The story of my diagnosis, my journey, and eventually, my death.

why the hell am i researching grief counseling for my own grief of my own death. 

i’m 23

and this is bullshit.

dammit.

The “Last” Sexual Encounter

Friday night, I went to a meeting.

I felt like shit, and my friends were going to something I was physically incapable of doing. I didn’t want to go anyway, but it was frustrating all the same.

I get food and a phone call. A friend is headed to a different meeting.

So I go.

She and I don’t get to speak until after the meeting, and we didn’t so much speak as held each other as I wept. 

We decide to get coffee.

She’s going through some difficult emotional stuff I have personal experience with, so I give her some writing she can do to get clarity around it. She begins to work on it. 

I notice a facebook comment on my post thanking people for their support:

And this comment:

I begin crying. 

She holds my hand.

I weep for a few seconds, pause, take some deep breaths, and calm down.

She tells me I have “such grace” about this.

I begin weeping again.

It’s chilly out, and we go to my apartment.

I realize as we’re sitting on the couch what could happen. Strong emotions and high tensions, she signals for a kiss.

I weird out.

We listen to my grief music and she holds me as I weep.

She lays in my bed.

I join her.

We are occupied for 3 hours.

We finish up, she dresses in my clothes, and we head outside for a cigarette.

I force the “going forward” conversation, and we talk about it.

I have a chest pain. I grimace and touch my chest.

She says

"I forgot you were sick"

"… So did I"

And I wept.

there will come a time, you’ll see
with no more tears
and love will not break your heart
but dismiss your fears
get over your hill and see
what you find there
with grace in your heart
and flowers in your hair

fayhelfer:

If you find yourself in NYC this weekend, check out all the great art at ‘Last Rites Gallery' - My piece showing is 'Heart Beet' pyrography, pastel, and natural pigments on wood (turmeric, kanku, indigo and beet) ~ 12” x 22” framed
 

fayhelfer:

If you find yourself in NYC this weekend, check out all the great art at ‘Last Rites Gallery' - My piece showing is 'Heart Beet' pyrography, pastel, and natural pigments on wood (turmeric, kanku, indigo and beet) ~ 12” x 22” framed

 

The Bad Magician

This is reposted from facebook, dated 4/2/14:

"The Bad Magician" - By John Miller

I set the table with great care. Tapping into knowledge from a long-forgotten cotillion class, I placed each setting with meticulous precision. The plates are fine milk-glass, hints from a bygone era, and the glasses are lead crystal. The candelabras, sterling, and the silverware, a fine brushed nickel for a touch of modernity. The tablecloth is sturdy and unspectacular. Everything was set as a fine arrangement for a fine showing.

A magician came by the table today. Delicately, he took hold of the tablecloth and inspected it. He looked at the threads, inspected the texture, noted the fabric. Satisfied, he grasped it firmly with both of his calloused hands and carelessly yanked it free from the table.

Now, if this were a good magician, this would be a grand display, applause abound, and the tableware would have settled nicely and quickly.

But this is the bad magician.

Nothing is steady anymore, things are still moving, the glasses, the candelabras, and the fine china all move with an ominous proximity to failure.

And I watch, with bated breath.

….

Today I spent 16 hours in a hospital. It was discovered that I have a root aortic aneurysm and a defective heart valve. My age and general health suggests that this may be indicative of Marfan’s Syndrome, which would aggressively accelerate treatment timelines.

And I thought you should know.