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September 4th, 2016
My mom reached out to me while I was sitting in the hot tub on the morning of September 4th, staring at the rust-red wall in front of me without seeing anything.
My mom said that the doctors had done another test on Dana and they declared him brain dead.
I was deeply conflicted.
The problem was, I myself had been told by doctors that there was a zero chance of something, in my case, my daughter’s survival, and they were completely wrong. Time and again, I’ve seen doctors proved wrong from within the disability community, and I’ve built up a distrust over their predictions and words.
Now they were saying that Dana was brain dead, that he had absolutely no chance of walking out of the hospital alive, that we should not delay in removing him from life support.
We went to the hospital, where my family was gathered.
We were now The Family that I had seen before, the ones who were one the cusp of letting go of their beloved. We were the ones who could barely move, so laden were we with internal conflict, with the prospect of such loss.
I don’t remember much from this day, it was such a blur. I don’t remember how we arrived at the decisions we did, I just know that we decided to remove Dana’s life support the next day, on Monday, September 5th.
This was Labor Day.
With Dana’s sense of humor and love of jokes, the date itself made me feel (more than anything, actually) that Dana really was gone. I felt like this was the kind of thing he would do, leave us completely on Labor Day, of all days.
If you knew Dana, you knew that he only stopped working when he was literally too tired to move. All he ever did was work. We joked endlessly about how we’d never take him on vacation with us in Mexico, because he’d end up building sand houses that he’d try to sell.
I remember when I was a kid, feeling a shock of recognition when I first read Tom Sawyer, who would get his friends to pay him so that they could white-wash his fence. So much like Dana, only Dana didn’t do that to get out of work; he did that kind of thing to get others to join him! Dana’s idea of a good time was for everyone to break out a shovel and dig a ditch together. Or something like that.
I think it’s important to note here that Dana rarely worked for anyone; he was always working for himself. “Work,” in his case was largely a matter of creative expression (Dana was extremely creative) coupled with money (Dana loved money), games (he loved outwitting people or situations), responsibility (Dana took care of everyone), and the thrill of developing his own empire. Work was the direct application of his skills, talents, love, energy, strength, with the direct result of things he craved: financial and familial stability.
It also gave him a route to escape. He didn’t have to think or be present in painful periods when he had work. Same people take drugs or drink; Dana worked. Work was a number, a pacifier, a balm, solace. It was a way to soothe his pain. So, with all that, why wouldn’t he love it? It gave him everything.
And now, Labor Day.
He would finally rest.
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.