“Live or Die, but don’t poison everything…” —Anne Sexton, Live

A friend wrote to me last week. He has ALS and is experiencing a noticeable progression in his symptoms. It happens. ALS  might technically be progressing all the time, but there are these moments, red-letter days or weeks, when you realize that you’re getting worse, that certain things are much harder to do.

Lately, I’ve also been dealing with a progression that feels big. I can’t get in and out of my chair very easily by myself anymore. So when it’s just the two of us, Scarlett and I can’t snuggle up on the couch after school to read books or watch TV. I can put her to bed, but only if Rob is home so that he can come lift me from my spot beside her and maneuver me back into the chair. I can’t sleep in late or take a nap, because I would find myself stuck when everyone else was gone.

This latest development comes alongside more weakness in my arms and hands, often leaving me unable to even prepare a decent snack during the day, never mind an actual meal. I woke up yesterday and couldn’t get out of bed, I tried to open a Ziploc bag of pumpkin bread and couldn’t, I wanted a cup of tea from a teapot that’s been too heavy for months. And I was so angry. Rob helped me with all of it, but not before I punched the plasticked pumpkin bread into a flat little mess, just to show it who was boss. Then I took a moment to congratulate myself for still being strong enough to beat up baked goods.

I wish things were different. I wish that I could take Scarlett for a drive or a walk when we’re both going crazy sitting in the house for hours on end. I wish I could make cookies for the couple who moved in next door, and climb a short flight of stairs to welcome them to the neighborhood. I wish that when my daughter wakes up at night, I could guide her back to bed and kiss her sweaty little forehead to remind both of us that I’m just a room away, but that I would run miles to be anywhere she needed me.

I wish someone would make a real, serious breakthrough in ALS that would allow me to stop getting worse TODAY. And then start getting better tomorrow. The way my progression affects my mood is a terrible thing. I am snappy with Rob, short with Scarlett. Every harsh word I say to them sits under my skin, waiting to bruise.

What does a family look like when the mom is sick? I know the answer, and it’s reason enough to buck up and at least do a little better on the attitude front. It’s worth mentioning that when my friend shared the details of his own progression, he added that his spirits are as high as ever. And I know that feeling, too. I’ll be there again soon. It just takes a little time to separate the progression from everything else that is true—and good—about my life.

That’s why, today, I’m ending with another piece of the Anne Sexton poem Live. She wasn’t exactly a chipper lady, but these thoughts of hers hit their mark with me. I know some might question my choice to seek inspiration from the words of a suicidal poet. I say, whatever works. Whatever makes ALS feel manageable, even peripheral.

Now I’m onto another day, a rising sun, a family who needs me in a million little ways that I know I can handle. And I will be nice to all of the bread.

Live

Today life opened inside me like an egg
and there inside
after considerable digging
I found the answer.
What a bargain!
There was the sun,
her yolk moving feverishly,
tumbling her prize -
and you realize she does this daily!
I’d known she was a purifier
but I hadn’t thought
she was solid,
hadn’t known she was an answer.

Anne Sexton

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