Tag 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

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

Hardly Strictly Anything

This weekend, Scarlett and I went to the Hardly Strictly Bluegrass Festival for our 4th year. The show—a free concert in Golden Gate Park—has been a San Francisco fixture for 13 years, made possible by underwriting from a generous music lover named Warren Hellman, who passed away in 2011, but made sure the festival funding continued.

Like other things we’ve done on an annual basis, this one made me think about all that has changed in our lives. HSB was Scarlett’s first concert, when she was 6 months old. That year, 2010, the three of us walked a mile from our house into the park, and the first act we saw was Emmylou Harris. A free concert brings a very large crowd, and it becomes overwhelming, which is why Rob is sleeping in this photo. But Scarlett loved watching all of the people. Plus, back then, we were nimble. When it was time to leave, we simply ducked out. Walked home.

HSB 2010

The next year, I was having trouble on my feet, but I wouldn’t miss the show. I drove us there on a Friday, parked as close as possible and pushed her in a stroller to the stage where M. Ward was performing. Afterwards, we met my brother-in-law, RC, who popped open a bottle of wine for the Chris Isaak session. Scarlett was in her running phase, and the two of us took turns racing through the crowd to retrieve her. When it was RC’s turn, I sat and thought about that Friends episode where Phoebe tells Chris Isaak his voice is a little girly. Read More>

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