The writers Jessica Lahey and KJ Dell’Antonia have a podcast called #AmWriting. Their tagline: Keep Your Butt in the Chair and Your Head in the Game. The good news is, I’m constantly halfway there. I certainly can’t complain that it’s too difficult to sit down. So the problem must be with my head. I’m so tired lately; I’ve been napping on the breathing machine for at least two hours a day. I don’t really mind this, time slows down with Scarlett at camp and Rob at work. There is much to think about, but little to do, mainly because I can’t do much of anything.

Things are getting harder. My arms are weak, my shoulders and elbows ache in the night, and I am getting tiny pressure sores on my hands, although those are healing since we stopped placing them on top of a pillow that was clearly made with not only bird feathers, but also beaks and bones. Most uncomfortable pillow ever, and my only excuse for not telling Rob about it sooner is the pharmacy that I stuff into my body before bed each night. #toohightocare

In the silence of my day, I reach for clarity. I strive for kindness and wish for peace. It’s become something of a mantra. Much more normal than some of my past mantras. For a while when I lived in Manhattan, the best way to fall asleep at night was to think of the name of the French politician Segolene Royal over and over again. My mind heard it as a mother’s whispered lullaby, and I passed out easily. I have no idea why her name brought me such serenity. It doesn’t work anymore.

Lately though, my mind has been whispering the name Philando Castile, another kind of mantra. This one is not so relaxing. I don’t like the world right now. My small corner of it seems fine; Rob and Scarlett and Otto and I are happy and safe in our home together. But the outside world with its harsh reality and blatant cruelty seeps through the cracks in our doors. We are facing a terrible illness, this constant threat to our existence as a family. But in so many ways, we are lucky. We are supported by friends and family, Rob works hard to take care of us, we get everything we need and most of what we want. In my immediate world, strangers are always kind.

Sometimes people tell me that it’s not fair that I have ALS. But what could be more fair than a disease that never discriminates? ALS did not pull me over and shoot me because of the way that I look. And if it were possible to put it on trial for its criminal behavior, I’m quite sure my worth as a human would be defended.

It’s hard to ignore the fact that right now our country is being run by people who appear to hold nothing but contempt for other people. Who want to take away rights and punish nonexistent offenses. The world is full of people who use their power to hurt others. I can’t even wrap my mind around it, much less try to explain it to a child in a way that makes any kind of sense.

#Whatwouldyougive is an exercise in empathy, and I’m asking other people to do it so that they can understand my life. But what I would really like to do is understand the lives of so many in this world who struggle in ways that are different than my own struggles. I want the people in power everywhere to find more empathy and understanding. I want us all to be healthy, to be kind, to be engaged, to care.

I very much hope that I am not sounding like a contestant in a beauty pageant right now.

I know that my life is valued, that I have worth beyond my failing body. I’m angry that Philando Castile was killed and that there’s no justice for it. I’m angry that people are crafting healthcare bills that don’t seem to involve health or care. I’m angry that there are bombs going off all around the world and that people fear for their safety in what should be the safest places.

Clarity. Kindness. Peace. Segolene Royal. Whatever works.

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