One year ago, Mark finished the chemo and radiation that turned him into the fossilized human on the left. He was grey and thin. His skin was dry and in places, fried. Soon after this photo was taken, he clutched his chest one night and in a rare instance, said yes when I said I wanted to call an ambulance. They admitted him and gave him a feeding tube. I asked the doctor, bluntly, “what are we doing here?” They asked me back what I wanted to do. Days later, Mark went to rehab, again, to relearn how to safely walk, to retrain his brain to make the connections it had forgotten how to make. He lived in a chronic fog. He paddled his feet and moved down hallways in a wheelchair. He wanted to come home. He was a mess.

He’s been a mess several other times this year. Last night at around 3am, I woke up to him getting out of bed to go to the bathroom. I watched him walk slowly to the doorway, pause, wobble ever-so slightly, and then as I yelled “Mark!” he fell straight back, out cold. I heard the dogs leap off kids’ beds at the commotion. I crouched over him. He opened his eyes. “What happened?” “I don’t know,” I replied. “A seizure or blood pressure drop.” He didn’t remember walking over to the doorway. He sat up slowly. I guided him into the bathroom, stayed with him, held his hand to get him back to bed.

This is still a part of our days, these sudden moments of terror.

I didn’t fall back asleep for a long, long time.

Also real is that mostly these days, he’s the healthy-ish guy in the photo on the right. He remembers things day to day. He eats food. If he is having a good day, he reads. He spends time working on a puzzle. On a really good day, he might put away the dishes. When I go into the kitchen to make dinner and then return to the couch, he tells me that he misses me, “when you go all kitchen-y.” He feels like his quality of life is pretty good.

Most days are at least a +1.


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