Category Archives: Relationships

Sarah gets sort of weepy

Last week I visited Cytokinetics, a company in South San Francisco that makes, among other things, drugs to treat ALS. They don’t have anything approved by the FDA, but they’re working hard with a new drug in the pipeline, and I was extremely excited to meet and speak with them.

When I rolled through the offices, I saw many familiar faces in the photos up on the wall. Corey, Logan, José, Shelly. Logan is a young neighbor of mine. He does not have ALS, but a different muscular disease that keeps him wheelchair-bound. The others are my ALS friends. We lost José last fall, and seeing his smiling face and remembering his deep, compelling and radio-ready voice was an emotional moment for me.

The folks at Cytokinetics asked me really interesting and thoughtful questions. What is the one thing I think people misunderstand about ALS that I want them to know? What are the tools I use to get through this with a positive attitude? How has my perspective changed since my diagnosis six years ago? How have Scarlett’s friends reacted to our situation?

Short answers:

It is not constant suffering. You could handle it. Trust me.

My friends. I realize calling your friends tools isn’t necessarily accurate, but there you have it. Jay and Stephen, you guys are such tools. Read More>

|Categories: Awesomeness, Life, Relationships | Tags: , , | Permalink

Learning to Fly

It’s been pretty well established on this blog that I spend most of my time sitting. That’s been true for about four years now, and as you may have read in any number of reputable publications, sitting all the time brings with it many health complications. Let me be more clear: I have a hemorrhoid. I apologize to those who feel this is too much information, but my little bottom feeder and I have been together for a while, and I named him yesterday so I thought I should introduce him. Not visually, don’t worry.

His name is Vance.

Web MD says that hemorrhoids are swollen veins, and that entire sentence makes me want to throw up. I think I just object to the words swollen and vein in such close proximity (both to me and to each other). Right about now, I’m guessing that those of you who were thinking I wonder when Sarah will write a new blog post are instead thinking Wow, I wish Sarah had kept this one to herself. But I simply couldn’t keep the wonder that is Vance from gracing the electronic pages that will live on after I’m gone. Read More>

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

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>

|Categories: Cure, Diagnosis, Drugs, Life, Relationships | Tags: , , , , | Permalink