Category Archives: Meditation

The Good, The Bad, and Everything Else

Some days, when I sit down to write this blog, I struggle with what tone to convey. I want it to be realistic, but not too negative. Optimistic, but not phony. Ultimately, I want to make sure that what I say is true. But throughout any given day, there are so many truths, and they all have moods that go along with them.

I now have to use a fist to punch the microwave open. I rarely bother doing this, but in a pinch, it does work. My fingers get tired of typing, and today I tried using my knuckles instead (not recommended.) I sometimes open the refrigerator, see what I want, and know that there is absolutely no way I can get it.

That’s all on the downer side of things. It’s true that I am feeling more paralyzed lately. It’s a word I used to use figuratively—unable to make a decision, rooted to one spot in fear. Now, it’s really quite literal. My arms are heavy, and lifting them requires an energy that I once reserved for gym visits or moving day. Read More>

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

Progressions

“Live or Die, but don’t poison everything…” —Anne Sexton, Live

A friend wrote to me last week. He has ALS and is experiencing a noticeable progression in his symptoms. It happens. ALS  might technically be progressing all the time, but there are these moments, red-letter days or weeks, when you realize that you’re getting worse, that certain things are much harder to do.

Lately, I’ve also been dealing with a progression that feels big. I can’t get in and out of my chair very easily by myself anymore. So when it’s just the two of us, Scarlett and I can’t snuggle up on the couch after school to read books or watch TV. I can put her to bed, but only if Rob is home so that he can come lift me from my spot beside her and maneuver me back into the chair. I can’t sleep in late or take a nap, because I would find myself stuck when everyone else was gone.

This latest development comes alongside more weakness in my arms and hands, often leaving me unable to even prepare a decent snack during the day, never mind an actual meal. I woke up yesterday and couldn’t get out of bed, Read More>

|Categories: Life, Meditation, Progression, Venting | Tags: , , | Permalink

Things that Matter

Today I had this weird thought that maybe people think my whole life revolves around my ALS. Well, around that and around being a mom with ALS, because those are the things that I talk and write about the most. So I’m going to tell you some other stuff that I’ve been up to, because I don’t really want you to think that I write one line a day on Facebook and then kick back, streaming Scandal off Netflix until it’s time to pick up Scarlett at school. I do not do that. Ahem. I do not do that all of the time.

Once a week, I take an Italian lesson with a woman named Paola. Paola comes over and I make her a cup of coffee and we speak Italian for an hour. And sometimes we eat brownies because the lesson is at 9:30am and that is an outstanding time for chocolate. This means I have homework, so at other times during the week (usually the night before a lesson), I can be found studying Italian. Other times still, I can be found speaking to Scarlett in Italian and she can be found yelling “No Italian!” at me. Read More>

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