Category Archives: Progression

Extra Yarn

“Soon, people thought, soon Annabelle will run out of yarn.

But it turned out she didn’t.”

-Extra Yarn, by Mac Barnett and Jon Klassen

Scarlett has a fabulous book called Extra Yarn. It was a gift for her third birthday, and we still read it often. It’s about a little girl who finds a box of yarn, and no matter how much she knits, there is always yarn.

Now, I’m not going to get all “life is like a box of yarn” in my best Forrest Gump voice, but I do love this book. The little girl makes a colorful sweater for herself, and one for her dog, and when a neighborhood boy is mean, she tells him he’s just jealous. I’m not, he replies. But, as the author tells us, it turns out he was.

The little girl is told that her sweater is a distraction, and when she offers to make one for everyone, she’s told that it’s impossible. That she can’t. But, the book goes on to say, it turns out she can.

And in the end (do I have to write spoiler alert here? The book is like 22 pages long, so I think you’re ok to hear this) when a terrible archduke curses the little girl, yelling that she will never be happy again, it turns out she is.

I kept thinking about that book during ALS Awareness Month. Read More>

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

ALS Awareness Month

May is ALS Awareness Month. Last year at this time, I changed the Speed4Sarah Facebook profile picture to this:

I like to stay optimistic about my future, to recognize that no one knows what’s going to happen and that we could, in fact, find a solution to slow down this demon—in my lifetime. But I also appreciate statements like the one above, because I think they help people begin to understand the absolute INSANITY of ALS. It sounds like science fiction, but it happens to people every day. Today, someone will experience the first signs of ALS, and they will have no idea what the hell is going on. Someone (many someones) will be officially diagnosed. People will die of ALS today.

It’s a conundrum for me, as I try to share my love of life on this blog, while not sugarcoating the reality of how everything has changed, and will continue to change.

I am someone who could walk—and who did, even at times when driving made a lot more sense. I am someone who could run—and ran miles. I am someone who cooked—and loved trying new recipes. I am someone who traveled—all over the world.

Those things are gone, and it’s completely true that I’ve found new ways to release stress and find happiness. But I miss my abilities, which now feel more like they were superpowers. Read More>

|Categories: Cure, Diagnosis, Drugs, Faces, Life, Progression, Research, Therapy | Tags: , , , , | Permalink

More Progression

Nearly four years from the onset of symptoms, my ALS progression continues. It is impossible to ignore. Lifting a fork or a spoon to my mouth is a huge challenge, so much so that I can feel my days of comfortably dining out coming to a halt. Being hungry and struggling to eat is extremely frustrating. Doing it in front of strangers does not add to the fun. I am now a two-handed eater, supporting my right wrist with my left hand, and still spilling often. I swear I used to be a graceful person, but now there’s an earthquake inside of me, shifting and shaking in ways I can’t control.

My fingers feel stronger than my arms in some ways, but then I try to get my contacts out, and it’s basically just an exercise in hope. Hope this works, hope I don’t stab myself in the eye again, hope somebody comes up with something soon to get some strength back in these hands before I have to consider eye surgery on top of everything else.

I’m not opposed to eye surgery. It would certainly make things a lot easier. But maybe I should just wear my glasses. [Immediate flashback to 3rd grade and a giant pair of purple glasses that covered my face. Then braces. My awkward years were extensive. Character building?] Read More>

|Categories: Life, Progression, Venting | Tags: , , | Permalink