Stroke Survivor Part 3: The Day He Quit (& I didn't)


On Thursday, time suspended. The four hours Dad begged to die, to go to heaven, will be known as the worst day of my life. I can't think of anything that tops this. It will also be known as the day I learn about my strength, my purpose, and how much I appreciate the past three years of mindfulness and awareness practice.

Turns out? All those monks, self-help books, and scientific studies are right. Being present, and aware, can literally prevent suffering.

Dad's brain right now is listening subconsciously to everything we say. Two Fridays ago Mom said she was going to Houston the next day. Dad said "What am I going to do?***" I said I'd stay with him. "Guess I'll watch TV." I gave him a hard time. "Hey! I'm not that boring!"

Later that night I asked what he planed to watch on TV the next day. He said he didn't want to watch TV. I said, "I know, I was talking about tomorrow. Maybe there is a sports game you like on. I can look." A few hours later I went for a walk and when I came back Dad was flipping through channels. He wouldn't go to bed. Something about the TV. TVTVTV No bed. TV TV. We sat there for a little bit but then I said, "I'm going to bed. Good night. You want to go to bed?" And then he did.

Several times he's been confused about what comes next when you get in bed. Mom will lay down and show him that's what's next. And then he'll do it.

If he hears a word, he'll start to do that thing. I said something about animations and he ripped off his eye patch because you watch animations. I wasn't saying it was time to watch one right now. That's his brain associating words he understands.

Earlier on Thursday, hospice home care came talk to us. She asked about a resuscitation wish. He said he wanted to die. I said I know he doesn't want to be revived if there's no hope of a semi-regular life, but not to let him go just because his heart stops or he isn't breathing. The lady said insurance might not pay for hospice if he wants to be resuscitated.

Very shortly after that he started begging us to die. My Dad, the man whom I've never seen cry once in 43 years, was bawling. He was sobbing and saying he wanted to go home to heaven. RIGHT NOW. He turned and grabbed Mom, hugged her tightly, and begged for her to let him go to heaven. It was horrible. The chaplain came in at this very moment and prayed for him, and I was a wreck because WHAT THE EFF IS HAPPENING, Y'ALL?! I texted work some weird, obscure, "I think my dad is dying, I can't make this meeting," text because brains are bizarre. I wigged out. Dad was wigging out. Mom was wigging out. It was a serious shit show.

We let him rest in quiet that day. A few hours went by and he got up and asked us to die again. We told him to wait until the next day because he's going to be getting some food. He hadn't eaten in days. I said, "You're hangry, Dad. It's a known issue. Also, it sucks here. That's ok. Let's see how you feel after your surgery tomorrow." He barely agreed. (I do firmly believe if Dad had decided that was his time, he would have died. The mind is amazing and the body listens. Thankfully, somewhere in there, he decided it wasn't.)

I text Mom while sitting on the other side of Dad, "Maybe he's depressed? And hungry. And tired. That would make me want to die, too." I went to talk to his nurse about possibly getting him something to help him sleep, and as I'm talking to her about this, it hits me.

He might not want to die. He HEARD us talking and his brain associated it. I don't know if he's in his head knowing he doesn't want this but can't NOT say it. Or think it. His brain is rewiring and he repeats tasks and thoughts over and over. This one got stuck on the loop.

So, while mom went to get some things to stay the night (just in case because neither of us felt particularly good about leaving him alone), I offered to read and put something new in his head. I read from one of my many Pema Chodron books. I read about being present. I was looking for anything positive, something that would ground us as humans, some of us with language skills and some without, and some with living goals and some without. I also found a few great passages from Bossy Pants because hey! Why not make this old white dude a feminist? His mind is ripe.

I know stroke survivors might not have the verbal skills to communicate, but can understand energy and intention. (To be fair, we all do, but because we use language, we often tune of of that ability. Sort of like relying on your vision to get around the room, but if your eyes are closed, you can experience the room more intensely through the other senses.) That day he started talking about dying, Mom and I were sobbing, obviously, and both really upset (clearly). So we kept that energy and feeling in the room all day in the quiet.

Once I made that connection, I decided not to have that emotion any more. I swear to you, he never mentioned it again. Instead, as I was reading, I made a sarcastic comment about the three items for being Present in my book, "I wonder where sarcasm fits in this list." My dad grinned.

He never once has asked to die again.

He's back. He's in his eyeballs. I'm learning so much about the human condition right now. Our bodies are fragile but our spirits are innumerably strong. He's never looked more alive since his first stroke, even though he is physically so much less than he was a few days ago. He can't do anything physically. He can't swallow, or walk, or talk, or move half his body. But he's more HIM than I've seen in two trips to Texas.

So, that begs the question, who are we, really? We're the people inside there. We're the connection that can understand each other. We're the tissue, yes, but we're more than that.

It's such a weird and wonderful trip watching this man, the man who taught me how to code, who has been a solid figure of strength my entire life, learn to be a human again. Because he's still essentially Dad in there.

It's just that now he gets to learn to be in his human suit again.

** What is so fascinating in this story is that less than a week ago, I could understand Dad. Since then he's lost the ability to speak at all. I watched him lose the ability to use his entire left side of his body in the course of a few hours. Our bodies are so ridiculous. But still, our minds can control this suit if we want them to. I love and hate this journey. I know so many of us have this story, it's wonderful horrible to be part of. Humans, right? Cosmic Shrug.