Monthly Archives: May 2015

Bad Behavior

Rob and I had an interesting interaction on Friday morning. It was a total ALS moment, where the frustration overtakes everything else and you realize that what is happening is real, and that you’re out there, traveling with no road map. It’s the definition of ALS: Good luck, keep driving.

Rob had returned from a trip to New York the night before. Our time without him had gone fine, thanks to help from my sister and my two assistants. On Friday morning, we were trying to get back into our routine. I couldn’t help but think about how simple it must have been for Rob that week. Getting himself—and only himself—ready to walk out the door. The luxury.

Some time ago, I decided to wear what is basically a uniform of maxi dresses, and I had recently purchased some new ones. So that morning, we tried on a new dress. Yep, I use the word “we” with zero irony here. It’s a group effort. Rob pulled the dress over my head. He adjusted the straps, kicked my footrest up and lifted me to allow the billowing material to fall towards the floor. “What do you think?” he asked. Read More>

|Categories: Life, Relationships, Vanity, Venting | Tags: , , | Permalink

Speed4Jenny

Today I’m introducing a new Face of ALS to the site. Jenny Smolinski was diagnosed with ALS in 2013 at the age of 35. I met Jenny online last year, and can identify with her in many ways. We are close in age, and we both have young daughters. Our ALS had a similar onset. We’re from the Midwest. We enjoy avoiding our ALS clinics. There’s probably more, but I’ll stop there, and move back to the more relevant data points.

Jenny and I also share a fear and sadness of leaving behind the kids who still need us. Her daughters are five and two. ALS with young kids is terrifying, but it can also be truly heartening. Our little girls don’t care that we’re in wheelchairs. Scarlett even uses mine to impress people. I took her to a new gymnastics place yesterday, and she made sure all the other kids could see her as she hopped up on my lap and we cruised out the door after class. When the ramp folded out of the van, two girls from her class gasped. “Cool!” one of them exclaimed. Scarlett preened.

I hear that’s not *always* the reaction from the older kids. Read More>

|Categories: Faces, Parenting | 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