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.

This month, I’ll be introducing more Faces of ALS. We’ll share stories of our lives, our families, our diagnoses, our new outlooks on life. I’ll post information about ALS, not just standard FAQ answers. For example: My daughter has known me longer with ALS than without it. That’s a tough fact for me.

Since the time that the Wisconsin chapter of ALSA released the above image, the world has paid a huge amount of attention to ALS. We’ve achieved a greater rate of awareness and an unprecedented level of fundraising, which translates to hope for all of the patients and families affected by this disease.

But despite all of the attention garnered by the Ice Bucket Challenge, I still meet people who don’t know what ALS is. I explained it to a woman at Scarlett’s gymnastics class two weeks ago, when she asked me if I wanted more kids. She followed that question up by suggesting we adopt. I continued explaining.

This disease is still not understood, not by your average urban nanny and not even by the top researchers in the world.

The ALS Association recently sent around a very convoluted infographic designed to explain where the Ice Bucket money went.

I’m sorry if you had a seizure while trying to take that all in.

Once my eyes adjusted to the shocking amount of words and images they had squeezed into it, I managed to glean a bit of knowledge, namely that it can cost $2 billion to bring a new treatment to market. Yikes. Numbers like that sound daunting, unreachable.

But it can and will happen eventually, just as it has happened with countless other diseases and treatments. People survive cancer, they live with AIDS. In recent years, there is a drug that works for a small percentage of the Cystic Fibrosis population. Things change. They get better.

A final image: Anthony Carbajal, who was diagnosed with ALS in 2014 at the age of 26, designed this, suggesting that people use it as their social media profile picture throughout the month of May. It’s not rife with information, it doesn’t tell you everything there is to know about the disease. In fact, to me, all it says is that our work is not done. And that’s more than enough motivation to keep me going.

Happy ALS Awareness Month, everyone.

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