Category Archives: Progression

A Beginning

Scarlett starts first grade tomorrow. I’m very excited for her, even though the only thing I remember about my own first grade experience is when my friend Beth and I made circles of glue on our desks and decided we would sell our tiny treasures for five cents each. We saw ourselves as entrepreneurs, but our get-rich-quick scheme was foiled when it turned out there was no market for dried discs of Elmers. Other things must have happened in first grade, but that’s literally all I’ve got.

I haven’t felt much like writing; there seem to be so many other things going on, and I’ve spent the last two days of summer vacation with Scarlett, sometimes arguing, sometimes exploring, sometimes just me watching her. I know she looks older, because other people keep saying so, but I don’t really see it myself. It’s sort of how I think I still look the same, even though I’m technically aware that I’ve changed significantly as a result of ALS. My daughter is taller. I’m growing gaunt, the bones under my skin jutting out like poorly concealed weapons. In my mind, though, we are both pink cheeked and strong. Read More>

|Categories: Life, Parenting, Progression | Tags: , , , | Permalink

Clinic Visit

“The scale says 65 pounds,” the physician’s assistant says doubtfully.

“Well, that can’t be accurate,” I say. “I mean, I know I’ve lost weight, but not that much.”

Molly agrees, from her spot on the right side of my wheelchair. She is my visiting nurse, and has been helping the PA move me back and forth so they can get a giant sling wrapped around my body. Every time I’ve used this machine, the PA says the same thing.

“This was donated, and it is a $10,000 piece of machinery, so when it goes, we’re out of luck.”

The tarp-like device is attached to a hook in the ceiling and when the PA presses the button, the whole thing rises like a thick uncomfortable hammock, with me trestled inside on splayed legs. The first time we seem to near an accurate reading, but then the ties on my boots get caught in the wheelchair, and the whole thing has to be redone. Twice more they lower and lift me, like we’re at a construction site instead of inside a hospital bathroom.  Read More>

|Categories: Doctors, Life, Progression | Tags: , | Permalink

Life and the Living

I know that everyone dies. I’ve known this for as long as I can remember, since I was a child and I had nightmares of losing my grandmother, a woman who will turn 90 in August and remains sharp and active, a fact for which I am grateful.

It’s not that I want to fight death and aging, the way the characters did in Gary Shteyngart’s great Super Sad True Love Story. People are born, and people must die. And in between is the living, with all of the happiness and suffering it entails.

Sometimes I wonder who I think I am to ask people to rally around a cause just because it affects me and my family. Everyone has their issues. And in many ways in my life, I’ve been far luckier than most. Still, I want more time. And I want more quality time, not time spent feeling my body get weaker and my abilities abandoning me like sailors leaping from a shipwreck. I have to remind myself that I’m only 37, and that this is not old, despite the way my body looks and feels. That it’s OK to wish for more time. Read More>

|Categories: Diagnosis, Faces, Life, Progression, Relationships | Tags: , , | Permalink