Monthly Archives: November 2015

The Movie of My Life

Sometimes I think about what the movie of my life would be like. I create the scenes in my mind and debate writing them down, but I’m usually too lazy. In my more dramatic moments with ALS, I actually already feel like I’m in a movie. It’s sometimes easier than acknowledging that this is real life.

But I want the movie of my life to be a comedy, and I don’t think ALS would really allow that. Maybe a dark comedy? My character would be played by Anne Hathaway, only because my brother-in-law recently said that we were the same person right after I announced that lots of people can’t stand Anne Hathaway. I think I need a second opinion.

Rob has a very busy job, but that didn’t stop me from taking a writing break just now to call him and ask him who he thinks would play me in the movie of my life. He didn’t answer the phone, so I called two more times and then texted him to pick up.

“Oh my god, are you serious?” he groaned when I asked him the question. Apparently I had interrupted a meeting.

“Yes,” I said. “I really need to know.” [Note: In no way do I really need to know.]

“I don’t know,” he said, clearly annoyed. “Anne Hathaway?” We hung up.

So it seems it’s official. Alanis Morissette is probably too old.

I feel sort of bad since Rob could understandably have thought I was calling about Scarlett’s health. She’s home from school today with an ear infection. We ignored it all week because it was Thanksgiving, we had family in town, and every time we gave her some junior strength pain reliever she started dancing and laughing and it seemed like everything was fine.

So that’s two things I feel bad about: interrupting my husband at work to ask a stupid question and ignoring my daughter’s illness all week because it was inconvenient for me. But Scarlett is fine and is currently on the couch watching Sheriff Callie episodes.

None of this is going in the movie.

We had a great Thanksgiving, despite Scarlett’s every-six-hours-on-the-dot complaints about her ear. Rob’s sister and her family were in from Arizona, and my brother and his girlfriend were here from Chicago. There was tons of food and lots of noise, and for the record, if my daughter hadn’t been well enough to eat her weight in whipped cream, we might have considered taking her to a doctor.

This year we were not able to live stream the #Speed4Sarah fall fundraiser and concert the night after Thanksgiving, because we were in Walnut Creek visiting my nephew. He plays football for Arizona State University and, much like a convict, was not allowed to leave his hotel the night before the big game.

Is it obvious that I don’t know any convicts? They probably don’t hang out at hotel bars.

We, on the other hand, did hang out at the hotel bar, where Scarlett took down an enormous ice cream sundae and messed around on the Snapchat app with her awesome—and stunning—older cousins (see above re: reasons I didn’t take her sickness seriously.)

I hated to miss the fundraiser, but I hear it was amazing and I am so blown away by all the thoughtfulness and generosity that went into the evening. It also just genuinely looked really fun based on the pictures my friends were sending me. I haven’t heard a final tally on what was raised, but word is it was upwards of 18K. All of that money goes to ALS TDI and the research they’re doing to end ALS and give my movie a happy ending.

Get ready, Hathaway.

Births and Deaths

It is the Monday before Thanksgiving. Today is my youngest brother’s birthday. I was six when he was born, and 14 years later I took him to a Phish concert in Wisconsin, where my boyfriend at the time overdosed on LSD, lost his shoes, and ended up in the psychiatric ward of the nearest major hospital. I sold our tickets for the following night’s show and took Paul home to Chicago, not super eager to explain to our parents what he’d been exposed to: no actual drugs, but the afterschool-special-type results of mixing jam bands, camping, and irresponsible college students who had too much disposable income.

In hindsight, perhaps it was an important formative lesson.

The boyfriend didn’t last, but my brother and I continued going to concerts together. Bob Dylan, REM, Modest Mouse, The National, Maceo Parker. Our music history is long, and has included no further drug drama, unless you count that one Widespread Panic show in Berkeley when Paul was 17, but I don’t really count that. Everyone sleeps in a hallway at some point in their lives.

Now my brother is in San Francisco for the month, so I got to celebrate his birthday with him tonight, just as he was at my birthday dinner earlier this month. We haven’t actually lived in the same city since he was 11, and I like having him around. He babysits, and watches football with us. We talk about books. Tonight at dinner, everyone shared Paul stories. The time he fell asleep in his bed during a game of hide-and-seek and my mom couldn’t find him. The time he ran out the kitchen door and fell off the back of our house when the deck was being redone. The time his name in the preschool yearbook simply read P.P. Corliano—and no one knows why. Read More>

Sarah Kalail

This morning I found out that a woman named Sarah Kalail had passed away from ALS. I didn’t know Sarah well. I don’t know how old she was or when she was diagnosed, but I do know she had grandchildren. Sarah and I were both on the President’s Advisory Board for The ALS Association. Her contributions to our calls came in the form of a computer-generated voice, which she used to talk about concerns for her family, the finances of those suffering from ALS, and the patient care piece of the disease. Sarah was outspoken, despite her inability to speak.

There are so many people who knew Sarah better than I did, and they will do the job of remembering her and sharing stories, so that the rest of us can learn more about her life. I just feel sad. Sad that someone who was once healthy and alive isn’t that way anymore.

I’ve been scrolling through Sarah’s Facebook page this morning, reading the posts of the people who miss her. I read some of Sarah’s own posts, including one about traveling—something I wrote about so recently. Sarah once loved to travel, to explore new cities with her husband and their sons. By 2013, she could no longer travel by plane, and even driving for long periods of time was difficult. But, she wrote “I find great solace in my memories.” Read More>