Category Archives: Research

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.

|Categories: Life, Parenting, Relationships, Research | Tags: , , , | Permalink

The Leadership Summit, eventually

This morning Scarlett and I were sitting at the dining room table where she was eating a typical breakfast of spaghetti and meatballs and I was drinking a cup of tea.

“I didn’t blog yesterday,” I told her, as if admitting something scandalous.

She seemed unperturbed, busy aiming an entire handful of grated parmesan cheese directly into her mouth.

“Please stop doing that,” I said, and then had a flashback to my own childhood and visits to see my Aunt Theresa and Uncle John. Theresa was my grandmother’s sister and everything about her and Uncle John seemed very old and very Italian. Their couch was covered in plastic. The fruit on their coffee table was wax. When we arrived in the morning, they were always eating cold spaghetti, and Uncle John would pinch our cheeks so hard they stayed pink for the remainder of the visit.

Scarlett continued eating her spaghetti, oblivious to my distraction.

“What do you think I should blog about?” I asked her.

“Well,” she said thoughtfully, “You could definitely blog about Otto throwing up and how Jack almost dropped my tooth fairy in the throw up.” Read More>

|Categories: Cure, Doctors, Drugs, Faces, Life, Parenting, Relationships, Research | Tags: , , , | Permalink

Good Things

I take lots of notes on my phone to remind me of the things that I’m planning to write about. But sometimes I think I overestimate my ability to understand my own shorthand. For example, I have a note for today that just says Relativity. That’s what the blog is supposed to be about, but I have no idea what it means or even if it’s actually the word that I wrote and not just some autocorrection.

Relativity.

Yep, just checking. I have nothing to say on that topic.

Some good things have happened lately, so maybe I should write about those things. I finished a New York Times Sunday crossword puzzle without cheating. I made it through the entire morning of no school without yelling at Scarlett or Otto. Wait, nope. I did yell at Otto, because he was eating all the plants in the backyard. He deserved it, so that doesn’t count.

And I won an award, which happened a little while ago, but I realize I haven’t really acknowledged it yet. It’s a leadership award from ALS TDI, the main organization that my family and I support since we feel that they share our sense of urgency around developing treatments and a cure for ALS. Read More>

|Categories: Cure, Drugs, Faces, Relationships, Research | Tags: , , , , , , , , | Permalink