Tag Archives: feeling philosophical

Being Quiet

I’m on Day 3 of a Bad Cold. It’s not really that bad, I suppose, but it’s sort of hard to tell when you mix it with ALS. In general, I don’t have a lot of coughing or nose-blowing strength, so when I’m stuffy and congested, things can be uncomfortable. My sore throat keeps me up at night, and that really highlights the fact that I can’t move around and adjust my body very well. A cold is manageable, but those of us with ALS fear getting sick like this. The flu could involve a hospital visit. Pneumonia could be fatal.

But, lucky me, it’s just this head cold. The nicest part is that with Rob on vacation and Scarlett out of school, I’ve just been able to lie in bed and nap all day. Floating in and out of consciousness, I find that I am surprisingly apathetic towards my situation. I was napping yesterday when they went to the park for a few hours, and I vaguely connected to the thought that I was literally stuck in bed, but I didn’t care. I just wanted to be still, to be alone, to be quiet.

I have more and more moments like these, even when I don’t have a cold. Read More>

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

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

So it goes

This week three of my close friends with ALS were in the hospital dealing with ventilators, pneumonia, feeding tubes, diaphragm pacers. Yesterday, a man I did not know personally passed away from this rotten disease, leaving behind a young daughter. My mood as I write this can best be described as low, with a side of resignation. This isn’t even close to Bad Attitude. It’s just the reaction you might have if you are hit again and again with the kind of surreality that comes with living in the world of ALS.

I extend my deepest sympathy to the family of Louis DiGiacomo, who was way too young when he died in the morning on November 19, 2014. 32 years old. All of the words that follow are about me and my experience, because that’s what I know. But my thoughts right now are with Louis and his family.

When I was first diagnosed with ALS, I could still walk. I was scared—very scared—by what I was learning about the disease, but it hadn’t truly started affecting my life and my autonomy. I drove myself to doctor appointments and walked down the long hospital hallways. On the day my nephew was born, I was able to rush to my sister’s house first thing in the morning while the rest of my household slept. Scarlett and I still went to parks and out for pancakes after her morning swim lessons. Read More>

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