Actively Dying

I had never heard a death rattle before, but when that sound started to emerge from my mother, lying in her recliner, I knew what it was.

The hospice nurse hadn’t believed me when I told her my mother’s intentions.  “If people could choose when to go,” she told me, “my mother would have stayed longer.”   I had called her supervisor the day before to explain what was happening, but she fobbed me off with kind indulgence.

When the nurse showed up, though, she took one look and understood that my mother was “actively dying.”    Yes, I had tried to tell them that and they hadn’t listened, thinking that I didn’t know what I knew.

My brother was upset on the phone. Why hadn’t the experts told him how close her death was?   Because they weren’t listening to me, that’s why.  He hadn’t been listening to me either, deciding to trust the experts.

Accurate mirroring gives you permission to feel what you feel and know what you know — one of the essential foundations of recovery.
 — Bessel van der Kolk, The Body Keeps The Score

I feel what I feel and I know what I know, but the social permission to do that, the effects of accurate mirroring, well, that has always escaped me.

I explain as clearly and effectively as I know how, but because my messages contravene conventional wisdom, because I have no system standing to offer them, they become invisible, discounted and rejected.

In a world where people like me, nature like mine and ideas I have are not supposed to exist, instead being hidden behind nice walls of separation, I may as well not exist.   I struggle to make my truth visible, but if no one will engage the meaning, writing it off as noise, invisibility stays, invisibility erodes, invisibility destroys.

Today, I feel my own breathing impaired.   It’s warm and humid for May, so that doesn’t help, but my breath is still shallow and laboured.   I think of breathing, but my crushing 2003 experience at Kripalu still haunts me.  They actively worked to silence me, turning returning to the breath into a reminder of erasure.

I boldly and elegantly speak my truth.   I share it with anyone who will engage it.  I do this to claim “one of the essential foundations of recovery.”

My sharing, though, seems to consume all the oxygen in the room, driving people away.   I keep breathing but never seem to fill my lungs, never seem to get the intake that I very much need.

I left a car for my sister to pick up, sending her a text message that told her exactly where I hid the key, “driver rear, under red bag.”  She acknowledged the message, but later that night, I got a furious phone call from a number I didn’t recognize.

“Did you leave the key in the car?” she shot at me.

“Yes,” I responded.

“Did you leave the key in the car?” she shot at me again.

“Yes,” I said.  “Definitely yes!”

“Well, where is it?”

She hadn’t brought her phone or her spare key, so after a time of furious looking, she had to hike to a restaurant and ask to use the phone.  She was riled and angry, accusing me of acting like others in her life who don’t follow through, who mess things up.

I gave her the finding phrase “driver rear, under red bag,” and she admitted she hadn’t looked there.

If I can’t get people to hear material that are short, tightly constructed and directly relevant to their concerns because they are distracted and stressed, what can I get them to hear?

If I can’t get people to hear, how can I ever expect accurate mirroring?  How can I ever see myself existing in the world other than as the projection of assumptions and conventions?

When my sister asks me how I am, I tell her.    When she asks me what I need, I tell her that I need to know that I have been heard.   What I get in return, though, is passive aggressive crap about my resistance to just do what she wants.   Just like the moment when she threatened to call the police to claim I had abused our parents if I didn’t comply with what would make her life easier, she doesn’t want to listen, she just wants to be relieved by my submission.

As a friend told me in the 1990s, “How can someone desire like you when they have never met someone like you?”   How can I exist in the expectations of the world if I am just too queer to be comprehensible?

“If you were just less, you would be much easier to take care of,” people tell me.  Live within my limits and you won’t be a problem, they say, because they know their own boundaries, know their own struggles to stay fixed and stable in the world, know how consumed they are with the struggles they face everyday.

It’s my own fault that I am too intense, too queer, too observant, too everything, or at least that is the message that I have gotten since I was very, very small.  How dare I challenge people who are just trying to do the best that they can in a very tough world?

The struggle to exist in the world, in the social world that we humans construct, is always difficult.  We exist between the primary duality, between wild individuality and tame assimilation, between transcendence and expectation.

When you don’t exist in the world, you get the air knocked right out of you.  Your breathing gets shallow and laboured.    It begins to rattle as the line between dark and light, between possibility and reality, between existence and invisibility pierces through you.  Warped mirroring, or no mirroring, well, it is crushing.

This pressure results in a kind of deep rattle, back and forth, shaking between here and there.

It’s something you will know when you hear it.