Category Archives: Progression

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

Life on Wheels

It’s Wednesday morning, and there’s a man in my kitchen. I’m usually home alone until about noon, but today is different, because Sal has come to patch up something like 60 divots and gouges throughout our recently renovated house. We were not attacked by starving woodland animals, nor was this the result of drunk Christmas tree decorating or anything to do with the resident 4-year-old. Let me explain.

In 2013, it was getting really hard for me to climb stairs. We lived on the second floor of an old Victorian in the Haight Ashbury neighborhood of San Francisco. One flight up to our door, another flight up to our home. As my legs grew weaker, it became clear that we needed to move. But there we faced a different kind of challenge: finding an accessible place to live in San Francisco, city of hills, multi-story homes and steep staircases. We were still searching when I lost my stair climbing abilities entirely. Rob carried me up and down two flights, every day. Over and over.

Finally we found a home that fit our needs. Read More>

|Categories: Life, Progression, Vanity | 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