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How to Live When You’ve Been Mostly Dead

The Princess Bride, Unknowing, and Offering your Fiat

I couldn’t speak.

I was pretty sure this is what Wesley from the Princess Bride had felt like when he had been “mostly dead” all day. The only way to get words out of him was to have Miracle Max pump air into his lungs and then squeeze his chest to get those precious words out into the air.

How do I explain what I need? My brain queried within me. How do I tell him that yes I was hungry, no I didn’t want any egg rolls - it just didn’t sound appetizing right now - and that there probably wasn’t much point in bringing me food anyway because opening and closing my jaws around something sounded as impossible as bench pressing 2000 pound slabs of lead?

"Mostly dead" from the Princess Bride

Problem was, I didn’t have a Miracle Max to squeeze out those words, and I didn’t have the strength to squeeze them out myself.

So instead, I just looked at the man in front of me. I kept thinking that maybe if I strained hard enough I could communicate. I spent about forty seconds desperately trying to outmaneuver my incapacity. Maybe if I timed it just right, I could sneak out a few words on an exhale when my brain wasn’t watching?

For the 118th time that day, I released my efforts. There was little point in pressuring myself to do things I couldn’t.

Just be, Kelly. This will not be forever. Rest.

The man knelt down on the bed where I was sprawled out, unmoving.

“Okay, I’ll guess.” He stuck his finger in my curled up hand. “Squeeze my finger if I get close.”

I rolled my eyes with the half grin my face allowed.

“You want… wine?”

I didn’t drink. My insides snorted, and I’m pretty sure my faint facial expressions reflected it.

“You want… some omelets?”

I was allergic to eggs. I made a small groan.

“You’re… wanting to go on a hike. You want to have a dance party. Oh, I know it-- you want to play charades!” he exclaimed with triumph on his face.

I mustered my Miracle Max and squeezed out a whisper. “Crackers.”

Because… hunger. They could basically melt in my mouth, right? 

“Crackers! You got it!” He scrambled from the bed into the adjoining kitchen, and returned with the blue box. 

Opening it with a flourish, he picked out two rice crackers, stuck them in his mouth, and crunched them with satisfaction.

I lowered one eyebrow and gave him the stink eye, in a way so slight it probably looked like I had a tic.

“I know, I know,” he said good naturedly. “I’ll go get my own gluten snacks in a minute.”

He poured a few crackers on the bed next to me. I stared at them. 

He paused, looking from me to the crackers and back. “Oh! Right.”

With the exaggerated mimicry you use when feeding a baby, he opened his mouth wide as if demonstrating to me what I needed to do in order to eat.

A breathy, silent snort escaped me. I opened my mouth a quarter inch.

“Heyo!” he celebrated as he popped the first cracker into my mouth. 

I smirked. Silly as he was, he was taking care of me.

Illness, Control, and the Mother of God

It’s no joke when your body is in rebellion. After going through 18 months of the above, I was beyond grateful when I was able to move, feed myself, and laugh again. Most of the time, the experience of illness seems like a half-remembered nightmare.

But unfortunately, the above is not a recollection from seven years ago. That episode happened this summer.

As you might imagine, the emotional impact of returning to that physical state was not a joyous one. When you’ve gone through something harrowing, the experience gets lodged in your muscle memory. Anything that resembles that event--a smell? the feeling of chaos? a loud bang?--makes it all present again, and your body goes into fight-flight in order to survive.

Perhaps the most difficult part of going through illness is the loss of control. This is true of any crisis that is bigger than us. They always involve a dying: death of your expectations, death of a relationship, death of your lifelong dream.

They all remind us that we, little creatures that we are, are not in control.

Offering your fiat during illness and crisis