Let me just start by saying I love to talk. I mean that in the least obnoxious way possible. I love to meet new people, strike up a conversation, and listen (truly listen) to their stories and experiences. This yearning to learn about others is a key part of what defines me. It’s why I love my job as a Development Manager at the ALS Therapy Development Institute.
Listening and talking to people who have an incurable disease has made me appreciate every moment in my life.
Since I have been at ALS TDI, I can’t help but wonder – what if I got ALS? How would life change for me?
At the Trek, I experienced a small (tiny actually) piece of what it is to have ALS because I couldn’t speak. It sounds silly, but remember I just told you how much I love talking to people? Not to mention it’s the #1 part of my job. So being at our largest fundraiser OF THE YEAR and losing my voice completely was pretty terrible. Yeah, it sucked.
I started the event with a voice, quite a loud voice. I was laughing, cheering constantly (you can’t help it with this crowd), crying, and meeting so many fabulous people who were riding 270 miles to end the awful disease of ALS.
I cheered so much that by day two of four, I had no voice.
I was unable to introduce myself to anyone, I couldn’t thank people or guide participants in the right direction, and I felt useless. Absolutely useless. When I saw people looking for the registration table, I tried to yell over at them, but barely a scratchy whisper came out. I tried hand motions and gesturing for them to read my lips, but they would just get confused, maybe even a little frustrated, and awkwardly walk away. One person actually got really impatient, not realizing I was only trying to help.
It was when I met Andrea though that it really hit me – I’ll get my voice back – while hers will slowly go away. Losing your voice is just one piece of ALS. I wondered how many times Andrea tries to communicate and people talk over her, don’t really listen, misunderstand her, or get frustrated and give up. I wonder how frustrating that is for Andrea. I hate that she and others with ALS have to experience that. But that’s how shitty ALS is.
The thing with ALS is that you lose more than your voice. You lose the ability to move your arms, legs, and body. So putting on clothes, feeding yourself, and going to the bathroom alone isn’t as easy as it once was (if not downright impossible). You now have to rely on care takers, partners, and family every day. This disease shows no mercy, and eventually, your body loses all function and shuts down.
ALS shows no mercy.
Losing my voice at the Trek showed me something. As I said good-bye to Andrea with no voice and she said good-bye to me. We looked at each other and just laughed. Because in that moment, it felt like we understood each other’s frustration in the challenge of communication.
I feel fortunate. I don’t have ALS, but now I have a sliver of an idea of what it’s like for someone with ALS to lose their voice and it makes me want to kick this disease’s ass even more.
So I ask you: What would you give to end ALS? Would you give up your voice for a day, your ability to walk, use your arms or the ability to eat? The #whatwouldyougive campaign was created by Sarah Coglianese (one inspiring momma I encourage you to read about) to challenge participants to give up a physical ability (voices, arms, hands, legs) for a set time (a day, a half day, an hour – your choice), to develop a *small understanding* of what life with ALS is like.
“I wanted to create a fundraiser that helped people understand just a bit of what it feels like to be stripped of these basic abilities,” Sarah said. “The things that most of us take for granted. The things that I absolutely took for granted until I received an ALS diagnosis when I was 33 years old. I’m 38 now, and even after all I’ve given up, I’m not giving up.”
I’m not giving up either, and on August 5th I am giving up my ability to move my entire body for the #whatwouldyougive campaign. I hope you’ll join me in the fight because YOU CAN.
For more information or to take the challenge, visit als.net/whatwouldyougive. You can also follow @whatwouldyougive4als on Instagram and the #whatwouldyougive and #wwyg hashtags across all social channels.