Rare Disease Innovation and Partnering Summit 2020

 

This was originally slated to be in Boston and I was super excited -- but even though it's gone virtual, I'm still super stoked to be part of the Rare Disease Innovation and Partnering Summit. Advocacy work doesn't stop in the face of a pandemic. It redoubles its efforts.

Just written

Love shifts over time. Stretches and wiggles, a toddler moving her lengthening limbs. Your marriage, as much a fact of your life as the breath that enters and exits the lungs. Your husband, the other half of your brain. Lately you’ve glanced at old pictures, set them aside. That knife in your throat, it comes and goes.

 

Nearly two decades you’ve known each other. Together the great majority of that time. Married nearly a decade. Parents. With each step forward a little bit of the sheen rubs more smoothly. It glows deeper but duller. Polish takes energy, effort. You barely sleep.

 

You feel someone at your elbow: barista politely kicking you out. Closing time. You haven’t looked at your phone in hours. Four. It’s four o’clock. Last ones to leave. The room is a vortex and you are its nexus.

 

You walk outside, blinking. It is not new to you, this earth. The sun stings your eyes. The wind chaps your face. Why does it all seem so alien?

 

The other day

I told Adam: "The raucous heart is still seeking something." I mean, sure, I was stoned, but I knew what I was talking about. I'm not stoned now and I still do. 

Damn I love my kid

And parenthood scares the crap out of me sometimes. As, I suppose, it should.

Jokai Blackwell on "Just As You Are"

What a marvel. This is a marvelous appearance ... that there is ground underneath our feet, that there is a sky above. Although in saying that, in 2020 ... we don't know. We could get some meteors that even shake that up. ...

This way, this presence, just is. Always, always is. And if we become very still, if we really look ... then we really begin to see that nothing changes. ... Intrinsically, something doesn't change. But in appearance, the forms change. ...

Buddhist practice, it's not all skipping through the tulips, right? It's not that way. When we really come up against the reality of this life, then we really have to grow up about ourselves and take full responsibility for who we are and how we appear. And if we can be truly open and truly vulnerable, be awake and aware, there's nothing of value there. It's common to everybody. ... Taken as a whole, it is an extraordinary thing. But the appearance of the extraordinary shows up in the ordinary. 

Harvard Square, 2009

 

Sharaine's pic of us at the bris

 

Pretty much

 

Ending a connection with a narcissist

I call it a connection because that's what it was. It wasn't a friendship. It wasn't a relationship. It was a toxic bond. More here.

Particularly pertinent:

"Research confirms that it’s common for victims to attach to their abuser, particularly when there’s intermittent positive reinforcement. You may be trauma-bonded, meaning that after being subjected to prolonged belittling and control, you’ve become childlike and addicted to any sign of approval from your abuser. This is referred to as Stockholm Syndrome, named for hostages who developed positive feelings for their captors.

"You’re especially susceptible to this if the relationship dynamics are repeating a pattern you experienced with a distant, abusive, absent, or withholding parent. The trauma bond with your partner outweighs the negative aspects of the relationship. Studies show that victims of physical abuse on average don’t leave until after the seventh incident of violence. They not only fear retaliation, but also the loss of the emotional connection with their partner, which can feel worse than the abuse."

Because of the pandemic

I can't sit in a bar with a guy friend going what the fuck, what do you think, what is wrong here? We can't listen to some Simon & Garfunkel, Joni Mitchell maybe, and lift a pint. Fuck you, COVID. You're keeping me from the good stuff.

The Write Stuff

The amazing Evan Karp was kind enough to include me!

Tabs

 So many inspirations: Jill Krementz, Mark Doty, Alison Luterman. When will I be up there?

Just written

Review. A formal assessment or examination with the possibility or intention of making change if necessary. The couch, soft and yielding, my body imprinting it over and again, like the thumbprint you press onto your new phone so it remembers your touch.

 

I will never remember his touch.

 

Evaluation. The making of a judgment about the amount, number, or value of something; assessment.

 

Outside: smoke dangling like a lethal weeping willow. Crying for me. Crying for us.

 

On the other side of the wall my husband is bathing our son. He’s playing Spotify. Queen. The Show Must Go On. I lie, listening to their voices braid together, knowing I am an asshole. How many times foregone for a text message, even those that never arrived? How many lies told in escapism’s name?

 

Guilt. The fact of having committed a specified or implied offense or crime.

 

I cannot find it. I turn over the cushions. Even the change eludes me.

 

*

 

We’re texting long after midnight the first time he tells me I should leave my marriage.

 

I laugh. It’s deeper than my normal cadence, secret, in a way of itself a lie. My husband on his side, snoring mildly behind my back.

Toxic

Just written:

And if you gaze long into an abyss, the abyss gazes also into you. – Friedrich Nietzsche

 

It was beyond toxic.

 

It put my marriage and my sanity at risk.

 

It wore flannel and had tattoos.

 

It will come back if I don’t prevent it.

 

*

 

Marcus called him a tarantula. “He’s a fucking tarantula, Allison,” he said. We were sitting at The Mansion, a diner not far from his apartment on the Upper East Side.

 

13 Ways of Looking at Flash Fiction

 This intro startled me:

“An interviewer once asked me, “If flash fiction were an animal, which animal would it be?” I considered a chicken because you can peck at the stories. Perhaps a badger because short shorts sometimes have to be more tenacious than their larger brethren. I thought a fish was apt because tiny stories often swim together. I almost decided upon a cat because a cat can fit perfectly in your lap, and even as you pet it and listen to its purrs, it stares at you with a mysterious menace.

“In the end, I decided upon a coyote that strangely appears in your backyard and stares into your kitchen window. You lock eyes, and the world is suddenly a little dangerous, a little less predictable. Something wild has briefly entered the safety of your domestic space and changed it forever with its feral threat.”

Complete essay here.

My students give me nicknames

Berkeley Muse

Jedi Master

Dr. Melfi

Dude. I love it.

Only because Happy Hour started early

Will I say this, but I told Adam last night how he paired Baz's name with his last name. I should have said he's a Sandler, that he only has one father, but instead I'm sure I just deflected. I liked the attention, see. I liked the fixation. I liked the toxicity, a connection akin to lighting one's own arms afire. 

My afternoon

I spent a wonderful few hours hanging out with my high-school friend Nick at Caffe Strada. As he was walking us to the car, Baz jetted ahead of us and seemed to be prepared to run into the street. My heart did some crazy juju and I almost lost it.

He's fine. I love him so much I can't even stand it.

New post on Finding the Birds Literary Journal

 Check it out!

Nikki Mirghafori on death's misalignment problem

 The days and the nights are relentlessly passing. How well am I spending my time?

Steve Maraboli on letting go

The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realize that the situation is over, you cannot move forward.

Virtual reality

 

Caffe Reggio, one year ago today

The world felt so open and available. When did it shut down? Michael took this picture. Tammy posted it on Facebook just now. "Better times," she wrote. I blinked back tears.

"You always want your kids to do better"

My father visited this weekend. He looked around at the South Berkeley neighborhood that I'm trying to escape and said: "You always want your kids to do better."

I will almost certainly never do better than the friggin estate that they built when I was a kid. Fortunately, that's not the priority.

As posted on Facebook

Baz starts transitional kindergarten today. It's certainly not how we'd pictured it. That said, there will be -- cross fingers, knock wood -- plenty of opportunities for ceremony, for walking up to a bright-colored classroom and tiptoeing away in happy tears.

Buddhism teaches us that clinging and reactivity are the founts of suffering. I will keep this in mind as I sit him down in front of his Chromebook and wave good morning to his teachers and classmates.

On a lighter note ...

I'm reading this awesome Twitter thread about childbirth and remembering when they rolled me in for my C-Section. I was so damn glad that they were only going to put the oxygen things in my nostrils, not the whole mask, that I started bribing the anesthesiologist. "You can have my janky car," I said, "and I have at least twelve dollars in my bank account. Oh, and you know my firstborn son is on his way. You can have him too."

"Are you trying to make me laugh?" He was only vaguely incredulous.

It worked. 

Truly beautiful NYT op-doc

 "Dying in Your Mother's Arms" -- this made me cry.

I don't ever post memes here ...

 But this one is pretty good.

Screen averse

I have so not been interested in my computer the last few days. That's probably healthy, right? It does mean I have work to catch up on. I can live with that.

I've alluded to the silent treatment quite a bit in the last few weeks. Clearly I've been experiencing it -- for three weeks now, specifically. You don't treat a friend that way. That said, I'm not surprised and I also know why. There are people who believe they should always get what they want, even if it's not theirs to have. That's quite the personality type. 

10 years ago

 I said goodbye to Oliver for the last time.

From Deborah

 Brianna Wiest is genius. I love what she says here. From the article:

If you tell me what you did today, I will tell you where you’ll be in 10 years. Not because you are destined to stay where you are. Not because you’re incapable of change. Not because you are doomed to repeat the past.

I can tell you where you’ll be in a decade because the subtle behaviors in your daily routine — and whether or not you stick to them — are the building blocks of your future life. I can tell you where you’ll be because your words are telling me. I can tell you where you’ll be because you will ultimately become exactly what you are. “Character is fate,” as it were. Your life will grow to reflect precisely what’s happening in your head.

You are mapping where you’re going to be in 10 years, you just don’t realize you’re doing it.

So. Damn. True.

Jesus

Watching Eternal Sunshine of the Spotless Mind. This movie is getting me in a different way than it's ever gotten me before.

I could have lost it all.

Something old, something new

 

Something to keep in mind

 Yup.

Adam always says: "What the hell do you expect? It's a pattern. Don't ever expect it to be any different." He's right. 

But the whole thing -- I mean, really. Marriage proposals in the East Village. Declarations and demands. I'm sure I had my role but -- what the hell.

WRITING FROM THE EDGE starts this Thursday!

If you've ever wanted to learn how to access and use difficult material for your art, this is your class. Please check it out, share with a friend, and consider joining us!

Another Fella quote

Fear does not have a lock on the solutions.

Andrea Fella on anxiety

Anxiety can come with thoughts, worries. Anxiety is more the physical feeling. Worry is the mental cogitation. And so anxiety and worry, I think, come together a lot. And so when there's anxiety our minds go into trying to lay out the map ... I think that this is connected to that problem-solving part of our minds. So what I would say about all of this is that there's something connected to discernment in all of these states. So the fact of climate change, for instance: that there is something going on there, and it deserves our attention, and because of this kind of response or reaction around "I don't know what's going to happen," that reactivity around I don't know what's going to happen, that agitation comes into the mind and begins to obscure or overlay or overshadow the simple discernment of this may be a problem. What do we do about this? How can we engage in this? What kind of choices can be made? ...

The difference in the mind that is in reactivity around worry versus the mind that is balanced in discernment around problem-solving is how much agitation is in the mind. So is the mind actually calmly reflecting, hm, this might be happening, these are some options? A kind of distinction here around worry.

I just joined the Editorial Freelancers Association!

My profile is here.

From an Upaya Zen Center dharma talk

Go into your cell and your cell will teach you everything you need to know. - Ancient Zen teaching