Monthly Archives: September 2014

Little Sister

Ask anyone with ALS. We are all fighting for our lives, but we have a list (sometimes a very short list) of the people for whom we’re truly fighting. My sister is very, very high on my own list. She is one of the MVPs of my story, a long-time fact that has only been underscored by my present situation. It was her birthday yesterday, so we celebrated. But the truth is, she is worth celebrating every day (or…at least once a week.)

I’m four years older than Liz, and when we were younger, we didn’t always get along. I found her to be very annoying and also cuter than me, which—if you’re someone’s younger sister—is the recipe for getting punched in the head. And I’m sure that did happen to her, although it was a great number of years ago, and so I conveniently forget the details. Read More>

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

Wising Up

Rob is out of town again. It should be fine, since he barely travels for work anymore, but even once a month makes me anxious. I think it’s more the build-up to the trip that I dread than the trip itself. It’s easier when he’s here, because we have an understanding, a way of managing my illness, our daughter, our schedules. When he’s gone, I worry that it will all fall apart. But it never does. I have plenty of help, including family who traveled to be here this week.

Last night, Scarlett climbed into my bed. “Daddy isn’t here and I get to sleep with you!” She had the beginnings of a cold all day, but it wasn’t until night that they blossomed into full-on congested coughs, snorts and sneezes. Neither of us slept, and now she’s home from school, watching My Little Pony: Equestria Girl. As an aside: this movie is TERRIBLE. I tried to turn it off, but she begged to keep watching and I gave in. It’s 9:30am, we’ve already read six books and had a dance party (she spun, I laughed.) About an hour ago, I began to wonder why I didn’t just send her to school. Then she started hacking in my face, and I remembered. Read More>

|Categories: Age, Life, Parenting, Progression, Vanity, Venting | Tags: , , , | Permalink

ALS By Any Other Name

It seems like practically overnight, thanks to the #icebucketchallenge, no one is referring to ALS as Lou Gehrig’s Disease anymore. There are still the articles that lead off with the seemingly requisite “better known as Lou Gehrig’s Disease,” but as someone who reads the vast majority of what is written about ALS, I’m noticing a change in the language. This is a real victory for ALS awareness, successfully escorting the disease into the 21st century. But there is still work to be done.

Lou Gehrig has been The Face of ALS for 75 years. And during that time, there has been minimal progress towards viable treatments and a cure. Part of this is because the disease is rare. Part of it is because it wasn’t resonating with people as a contemporary issue to address. Now, suddenly, it seems to be resonating.

The ALS Association and all other organizations who are using Gehrig’s name and image to encourage awareness and funding for this devastating disease must take notice of this shift in the landscape. Separating ALS from Lou Gehrig should be an easy transition now that it’s actually—finally—ALS that people are talking about.

Identifying a disease with a specific person who died of it before World War II does a disservice to those who are currently living with said disease. The further we get from Gehrig’s untimely death in 1941, the fewer people who are familiar with his story. I know that’s hard to understand if you are well aware of who he was, but walk around, ask some young people, maybe hit up some folks who aren’t big baseball fans, and see what you discover. Read More>

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