Tag Archives: feeling philosophical

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

Real Life

It is almost 2016, a year I couldn’t have imagined when I was a child. The idea of it, sure. I probably expected to be married with children, to have a job. But I had no concept of what that really meant.

Now I have a husband—not someone I sketched loosely in my head, but an actual person with his own thoughts and odors and television habits. I have a little girl who cracks up at knock knock jokes, and who says words that I swear I didn’t teach her. My sister is expecting her second baby—a real-life baby, not just a doll that we named and held and then left under the bed.

My life, it seems, has taken on a life of its own.

As a kid, I didn’t anticipate settling in California, a place that was once only familiar to me via The Babysitters Club books, with all their talk of granola and tofu and sprouts and Knott’s Berry Farm. A place that remained well beyond my reach until I crossed the state line in a U-Haul more than 15 years ago.

And I could no more have pictured a life with ALS then I could an alien abduction or the actual experience of childbirth. It wasn’t that I lacked creativity, but who at a young age could have colored in the life that would eventually be theirs? More to the point, what would we do if we had known? Read More>

|Categories: Life | Tags: , , , | Permalink

Extra Yarn

“Soon, people thought, soon Annabelle will run out of yarn.

But it turned out she didn’t.”

-Extra Yarn, by Mac Barnett and Jon Klassen

Scarlett has a fabulous book called Extra Yarn. It was a gift for her third birthday, and we still read it often. It’s about a little girl who finds a box of yarn, and no matter how much she knits, there is always yarn.

Now, I’m not going to get all “life is like a box of yarn” in my best Forrest Gump voice, but I do love this book. The little girl makes a colorful sweater for herself, and one for her dog, and when a neighborhood boy is mean, she tells him he’s just jealous. I’m not, he replies. But, as the author tells us, it turns out he was.

The little girl is told that her sweater is a distraction, and when she offers to make one for everyone, she’s told that it’s impossible. That she can’t. But, the book goes on to say, it turns out she can.

And in the end (do I have to write spoiler alert here? The book is like 22 pages long, so I think you’re ok to hear this) when a terrible archduke curses the little girl, yelling that she will never be happy again, it turns out she is.

I kept thinking about that book during ALS Awareness Month. Read More>

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