Dear friends,
Here are some moments from my week.

One. About to put on my pajama shirt, I look at the reflection of my back and thin arms in the mirror. I close my eyes and pray that next week I’ll walk out of the appointment at the ALS clinic knowing I have something treatable, knowing I have another three decades and good-enough health to look forward to. I open my eyes and watch small tremors move under my skin, making it ripple like river water. I feel tiny pop-rocks in my tongue. These are fasciculations which, when combined with other muscle-related symptoms, are indicative of a serious neurologic illness.

Two. I walk down the street when a neighbor pulls up next to me.

“Hey Hanna, how are you doing?” he asks. His concern is so genuine that I start to cry. One of those “I lift my hand to cover my mouth and try not to wail loudly” cries.

“Oh honey,” he says, “Come over here.” He beckons with his large workers’ hands.

I shake my head left to right.

“No, seriously,” he says, leaning out of his pickup, both arms extended towards me, oblivious to the hurried cars that drive around him.

“I have COVID,” I manage to say through the tears.

“Ah shucks,” he says, arms still outside his truck but now folded towards him. “I’ve been praying for you, you know. Marc told me you’re not alright.”

I keep crying.

“I’ve been praying. Is it working?”

I just stand there in my tears, a little too embarrassed to hold his gaze.

“Well, I’ll tell you what, I’m here for you sweetheart and I’ll keep praying for you.”

He turns his large torso towards the road and takes a hold of the steering wheel as he slides down Finland ave.

– – –

This must be monsoon season for me, as crying feels like my full-time job. It feels as though the spider web of my life is secured to losses. Every time it trembles—like when I fell yesterday, or couldn’t cut the chicken breast, or can’t open my paint, or had to try three times before I could swallow the wheat berry-sized pill. Or when my voice falls on her face a few feet in front of me—never reaching across the street. Every time I encounter an inability or a loss, I lift my head, following the thread to the end along what seems to me a terrible path of loss and then annihilation.

Returning to Pittsburgh was not the soft landing we anticipated. In Montana I started taking a medication which lowers my white blood cell count. Breathing can feel strained at times. Struggling for air on the flight from Great Falls to Denver, I took off my mask. At the time I wondered if I’d get COVID. And yes, I tested positive for COVID week Monday.

That night in my brain fog I forgot to put the chickens to bed, and the life of a new young hen was abruptly ended by raccoons. I cried when I heard that. Not only for our hen, but also for my diminishing capacity to be in life. I am crossing the threshold of someone who was once vibrantly healthy into disability.

Practically I also struggle to adjust to my low levels of energy, the bodily sensations of a motor neuron disease, the increased muscle weakness. I accomplish much less with my slower moving body and stressed mind. Because some of my muscles are dying, the rest need to work so much harder, increasing my metabolism. I need to eat a lot more so I don’t lose more muscle or organ tissue. With some of the atrophying muscles being in my mouth, it all adds to a really trying season.

I couldn’t have survived this week of Covid isolation and distress if it wasn’t for all of you. So many of you checked in on me, fed me, delivered meals and juice and encouragement, even loaned your dog to me! Some of you donated to the site or signed up for the meal train. I can’t tell you how much that means to me. Thank you.

Feeling so many things including gratitude,

Hanna