Category Archives: Life

The Unclean Machine

Scarlett woke up this morning and got dressed in Parmesan cheese. That probably looks like a dictation mistake, but it’s true. She ate her breakfast of leftover pizza, wearing nothing but her underwear, and by the time she crawled onto my lap to listen to Harry Potter and the Order of the Phoenix, she was covered in tiny flakes like pungent snow, and so was I. And really, what could be a more auspicious start to the day than being sprinkled with secondhand dairy dandruff? When Scarlett flounced off to brush her hair and change her clothes, I just sat there with my winnings.

When she was younger, my daughter used to hand me all of her garbage to take care of. And as far back as I can remember, I would direct her to the nearest garbage can instead. She was three years old when I got a wheelchair, and when she tried to give me her garbage then, I would say “Mommy is not a garbage can”, and shoo her away. At six years old, she’s good at cleaning up after herself, and yet, I feel like I’m always holding something that is hers, covered in something she was eating, or in sudden possession of a lap full of sticks and flower petals because she “needed them for later!” Read More>

|Categories: Life, Parenting, Vanity, Venting | Tags: , , | Permalink

Self Serve

I’m often in a little bit of a bad mood before lunch. I remind myself that it’s just because I’m hungry, and that I’ll feel better as soon as I eat. Still, it’s not a good time for me to talk to other people, and that includes the people who are here in the house with me. Before lunch, I am often very quiet and secretly simmering. This never used to be a problem for me before ALS, when I had a predictable appetite and could attend to all of my own concerns. But now that I move so little, I’m rarely hungry…until suddenly I’m famished.

I try to take in a lot of calories during the day, but my stomach is the size of a child’s fist, and it tightens around half a bowl of soup. They say to eat often when you have ALS, to keep your energy and your weight up. I do my best. I miss snacks – – a concept that really only applies if you can eat without assistance. If someone else is feeding you, it’s not a snack, it’s just someone else feeding you between regular meals. And so, in yet another way, ALS renders me not quite myself. I don’t know who I am anymore, I’ve said more than once. So much of my identity was wrapped up in my physical abilities, whether it was long-distance running or near-professional tortilla chip consumption. Read More>

|Categories: Life, Meditation | 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