Category Archives: Diagnosis

Liquid Gold

Apologies to my parents for this one.

It was my freshman year in college, and I had to get a job in order to contribute to my tuition. I had chosen an out-of-state school —the University of Wisconsin Madison —which was a relatively mean thing to do, because I could have gone to the University of Illinois and saved everyone a whole lot of money. But I don’t regret the decision at all and I was happy to work in order to attend the school of my choice. Except, that last part is a lie. I didn’t want to work! I wanted to make friends, meet boys, and go to parties.

I got a job in one of the school’s cafeterias. It was horrible. Everything smelled like wet mushrooms covered in dog hair. I had to wear a red jacket and possibly a hat (I have blocked this part out.) Two of my bosses kept hitting on me, and washing the dishes was very much like what I imagine falling into a dumpster would entail.

It’s not that I was lazy. I worked throughout high school: at an ice cream shop, a clothing store, a bakery. I babysat, and fed my neighbors’ cats. But the cafeteria just wasn’t working for me. I hated seeing my classmates and feeling like I was somehow different from them because of the red hat I may or may not have been wearing. I quit after one semester, but I still needed to make money.

No, I did not become a drug dealer. Read More>

Life and the Living

I know that everyone dies. I’ve known this for as long as I can remember, since I was a child and I had nightmares of losing my grandmother, a woman who will turn 90 in August and remains sharp and active, a fact for which I am grateful.

It’s not that I want to fight death and aging, the way the characters did in Gary Shteyngart’s great Super Sad True Love Story. People are born, and people must die. And in between is the living, with all of the happiness and suffering it entails.

Sometimes I wonder who I think I am to ask people to rally around a cause just because it affects me and my family. Everyone has their issues. And in many ways in my life, I’ve been far luckier than most. Still, I want more time. And I want more quality time, not time spent feeling my body get weaker and my abilities abandoning me like sailors leaping from a shipwreck. I have to remind myself that I’m only 37, and that this is not old, despite the way my body looks and feels. That it’s OK to wish for more time. Read More>

I’m Not Done

May is ALS awareness month. I’m sure that anyone reading this post is more than aware of ALS at this point, but let’s keep talking about it anyway. Otherwise this might have to be a blog devoted to my love of tortilla chips. Happy Cinco de Mayo, by the way. And how about that Ted Cruz? No! Stop! This is an ALS blog. Puppies.

ALS TDI is running a campaign this month called #InThreeWords. They are asking people to come up with three words to explain how ALS makes them feel. I thought it was something that Scarlett and I would do together, but that didn’t work out as planned, and you can hear why by watching this 1-minute video I made to share my three words. It’s G rated. Read More>