Tag Archives: morbid musings

Redemption Song

I miss my handwriting. I miss doodling on the margins of a page and filling in the answers to a crossword puzzle and sending a thank you note and making lists. I miss dancing and real hugs and opening doors and swinging my legs over the side of the bed and putting my feet on the ground.

Last night Scarlett was in my lap reading herself a book. Her hair is down to the middle of her back and it ends in rings of gold. All I could do was look at that glittery hair against her little brown back. My hands won’t even rise high enough to touch her. It is heartbreak. I want to hold her so much that my stomach hurts and I feel a quickening in my chest. I have shed enough tears over this to generate my own weather pattern, and still my body won’t accept the fact that it can’t reach for this person it created.

I am becoming increasingly breathless, and my tongue is twitching inside my mouth as if electrified. It is horrifying to watch, just one more muscle growing weaker and caving in, the whole thing looking like a worn down soccer field full of divots waiting to trap an ankle and snap it. I can still talk, still swallow. But my whole body is tired, and my brain races with ideas that I could never realize.

These are true things. But there are other true things that are significantly more uplifting. Read More>

The Words We Use

I’ve recently spoken to a few people with ALS who all said “I’m dying” at some point during our conversation. I understood. They are recently diagnosed, trying to make sense of a sudden, terrible loss of control over their lives, their futures. To say “I’m dying” can be a way to acknowledge what is happening, while still taking back some of the power. “Now I know what’s going to kill me,” one man said.

Or it could just be a way to begin to cope with what we’ve all been told is the inevitable conclusion of having this disease.

But I’ve found it doesn’t work for me. I once tried looking in the mirror and saying “I’m dying” out loud to my reflection. It just made me want to laugh. I don’t feel like I’m dying. Even though any one of us could look into a mirror and say those words, and they would technically be true, when I said them, they sounded false. Read More>

Getting Schooled

Rob and I have spent the past month attending elementary school open houses and tours, just like every other parent with a preschool age child in San Francisco. I know there are many, many places in this country where you don’t have to go to numerous open houses; submit your top ten PUBLIC school choices, desperately hoping to get one; or subject your children to “visits” (i.e. interviews) at private schools. I grew up in a town where the school you went to was just the closest to home, and that was all there was to the selection criteria.

But we want to live in this city, and so we play the school game. It’s actually going fine, I did my online research, made a list of schools to see, scheduled the appointments, and showed up. Easy. What I didn’t count on was the reaction I would have during our first tour, when the children were actually there, as children generally are when school is in session.

They roamed the halls in little packs, made noise in their music class, studied quietly at low, colorful tables. And then there were the walls covered with their work: drawings of families, poems entitled Where I Come From, and lists of classroom rules they had all devised together. Read More>