It turns out that Dana had been really into this one particular TED talk not so long ago. It was called, “Dying to Be Me” – Dana absolutely loved it and made his daughter Yu Han watch it. I put it on and watched it today in his room:
(it’s captioned through corrected YouTube captions; safe for us deafies)
So. Yeah. Blow me away already, why don’cha.
Dana was super-into a story about a woman who went into a coma? Whose organs were failing and was on life support, given hours to live? WHAT IS GOING ON HERE, DANA?!
Because that’s really where he is now. Infection upon infection upon infection. Life support of every kind. Organs failing. Coma. Non-responsive. Brain inactivity.
We don’t know what’s going on. If he’s collecting his energy so that he can pull all of his pieces together and focus and then come back? Or has he moved on? Is he wanting to move on but is hesitant to leave us the way he is? Or does he want to stay but is hesitant about all that needs to be done if he does?
WE DO NOT KNOW.
All I know is that when I sit there with him and hold his hand, play music for him and talk to him, I am truly happy. Just knowing my beloved brother is alive, that that is his pulse that I am feeling in his hand. That brings me joy.
I love him so much. We all love him so much.
This doctor walked in yesterday afternoon as I was hanging out with Dana.
She was tall and blonde, very young. She introduced herself and her qualifications and said she would answer any of my questions. I said I really didn’t have any. She launched into a big description of his infections and wrapped it up with the fact that it’s not his infections they are worried about as much as his (lack of) brain activity. I said, ‘well, it’s not over till it’s over. He’s still going.” And then she went on about how they are worried about his “quality of life” and all that crap. I held up my hand, “it’s okay, you can stop there.” “We just like the families to know the reality of the situation,” she said.
“The reality of a situation can change in an instant,” I said, “I know this for a fact. Miracles happen – I know this through my own life, through my daughter’s; things happen and change and you just DON’T KNOW. It is so important that we stay positive and focus on the positive in this.”
She backed down, said ‘sure’ and went about her rounds.
I was left feeling a little violated – pleased that I actually told her what I thought, and pleased that I stopped her from spewing her death pronouncements. But man? She doesn’t need to say all that. I got the feeling that she was really out to burst my bubble, you know? Like, she saw I was in a good vibe with my brother with music going and talking to him as if he was awake – and she was all, ‘gonna squash that one now!”
Joy-sucker. Hope-Slayer. “Realist“.
You know what I think? Say it all once. Let us know once. And then stop. Let us figure out for ourselves how we need this to be for our own hearts. Let us have hope unless and until hope is futile. It is never over until it really is over.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.