Both Things Are True

I got to be all over the country in seven days.  LA, Chicago, NYC. Got through a whole chapter of Ace Attorney on the plane. These past few months have felt so much like evidence for my patterns- things going wrong; that I’m cursed, that only bad things happen to me. I count things I’m grateful for like precious beads. Maybe I’ll wear them like a rosary with more belief next year.

My mom came back to life as I visited her for the three days I was in Los Angeles. She spoke three words that weren’t just her echolalia- “no more, thanks”- when she was done with her soup. I wasn’t there to hear it

So here we are back again. She’s alive and yet she’s lost a little more this last illness. She’s taken to moaning and grunting instead of “yeah” or “no”. She can’t squeeze her squeaky toys anymore. She still giggled each time she saw me- her husky, weak little laugh. For a while a few years ago, the biggest reminder of the person she used to be was her bombastic, wild laughter. Now as she struggles to cough, she can’t howl like she used to.

There are good things- always some good things. My family and I more in synch in how we care for her, what we want for her. I’m surprised at how my family is taking this revival- we were making funeral plans. And now she’ll keep on, but suffering a little more than she was before. We all want her to stay- and hope she doesn’t suffer much longer. Both things are true.

A little over a year ago I became familiar with an organization called End The Legacy.- a group that advocates for those affected by genetic ALS and FTD. I was on a call today. Another SOD1 patient (a different genetic cause of ALS than what my mom has) talked about their symptom improvement and reversal on Toferson, a drug approved last year for SOD1 patients. It’s wildly exciting to hear about ALS patients being cured. And still my heart aches- why couldn’t there be any treatment for my mom? When other people are being cured why was she forgotten? 

I won’t listen to any more promises to my mom about taking her out of her care home to see the ocean- not unless there are plans to make it happen for real. It seems so impossible. What else can I do for her?

I sing to her. Every visit. Sometimes it’s a big show- I take my stage in front of the bed, put in a YouTube karaoke track and really perform. Other times it quieter, and I rock her as I sing “If I Loved You,” “Mister Snow,” “The Age of Aquarius,” “I’m in Love With a Wonderful Guy.” Sometimes she mouths along! It’s so astonishing- music and art carries us for life.

I lost my wallet and keys this US tour, but I feel more excited about my opportunities and projects.

I share stories with whimsy and empathy, inspiring joyful connection and hope.

I cringed writing this blurb, an exercise in my goal setting class about playing to win- the game of life, that is. 40 days ago, I made a Letter of Accomplishment about everything I want to accomplish by January 20th, 2025. 17 goals I will have accomplished by then. By then, I will have written and posted 13 letters to my Mom.