I woke up the other morning feeling strange. I spent the day cleaning and crying and wondering why. It’s how I operate: feel first, think later. Everything seemed wrong; I was a stranger in my own skin. And then it hit me like a ton of bricks- mom. I haven’t had a bad day like that in a while. I didn’t even cry on my birthday, which was just a few weeks ago. I just didn’t recognize the emotion.
I’ve been seeing ALS everywhere recently, what with this Ice Bucket Challenge madness. I am glad awareness is being spread. It is a solitary feeling to have something define your very existence and no one know what it is. To tell people what killed my mother and have them recognize the letters- that would be a miracle on it’s own. But I am in the same way at odds with the whole idea.
Picture a hospital bed, a person, skin and bones, lying on it. Picture a feeding tube, a catheter. Lots of blankets and medicine. This person cannot speak- the silence is deafening, all blood in your ears. Imagine it stretching out to infinity, days and months and years of this, bed sores and visitors and silence. A prison disguised as a body.
Jump to laughter, sunny days, young people. Celebrities. Challenges accepted and cold water. Ice. Wet hair and screaming and checkbooks. Athletes, friends, families. Green grass and blue skies.
These scenarios are at odds with each other. ALS has nothing to do with happiness, nothing to do with laughter, voices ringing with cheer. ALS is a death sentence, a jail cell, an all-encompassing hell of a reality. ALS robbed me and my sisters of our mother, took a wife from my step dad, a daughter from my grandparents. I am livid. Nothing will ever make up for it.
Do I want awareness? Of course. Do I want a cure? Most definitely. I don’t wish that existence on anyone. But to see such opposing ideas side-by-side, it just doesn’t fit.
I did the challenge with my sister, and it felt good. It felt good to feel like I was doing something, contributing somehow. But for most, this will be forgotten in another week. It will live with Salad Fingers and Charlie the Unicorn in the dregs of the internet.
But I will never forget. People are missing from this world because of this disease. People have been murdered, robbed of their lives, with no thought or care or compassion. They are gone, and will never return.
So I ask you: do the challenge, laugh, donate. But remember. Think about those we’ve lost, those who are fighting a losing battle for their lives, and those yet to be diagnosed. Understand the gravity of your actions. Know what it really means, let it sink in and become a part of you. Educate yourself, educate others.
And may those who we’ve lost rest in peace, as one day you will be avenged.