Brian Wallach Reflects on 2019 ALS TDI Leadership Summit

On Friday, 11/8/2019, Brian Wallach received the Stephen Heywood Patients Today Award. The award was presented to Brian by Alison Burell, whose husband Cory had received the award the year before, and Ben Heywood. Here are Brian's reflections from his time at the Leadership Summit.

On Friday I spoke on stage. Half way through my voice shook, then failed and I began to cry. That moment and the 24 hours after led to this thread.

Lesson One: It’s okay to cry.

I am the oldest of 3 boys. Our dog was a boy. My dad played college football.

— Brian Wallach (@bsw5020) November 11, 2019

I went to an all boys school from 4th through 12th grade. Growing up, tears were allowed only when something was broken.

When I was diagnosed with ALS I cried. A lot. Since then I’ve gone back to what I do best: even if you are hurting, don’t cry.

I sat on stage on a Friday to receive an award for my advocacy. The last person to receive this award was a dear friend. I say was because he lost his fight to ALS earlier this year.

As I spoke it hit me that likely every patient who won this award in the past was now dead.

— Brian Wallach (@bsw5020) November 11, 2019

— Brian Wallach (@bsw5020) November 11, 2019

I thought about them, their families, their fights and how much and how many had been lost in this fight. And for a brief moment, I allowed myself to be lost in the pain of it all.

A female voice from the crowd broke though my inner monologue: “you got this Brian,” she said

I paused, took a deep breath, and locked eyes with a stranger. He smiled back at me as if to say, “it’s okay to cry.” I smiled back, gathered myself and finished my speech.

Lesson 2: To doubt is to be human. What you do with that doubt determines what kind.

— Brian Wallach (@bsw5020) November 11, 2019

— Brian Wallach (@bsw5020) November 11, 2019

As I flew home Friday, I kept thinking about the prior award winners. Like me they launched into their fight believing that they could be the first survivor of ALS. Like me they poured their heart and soul into this fight. So why would my story end any differently than theirs?

— Brian Wallach (@bsw5020) November 11, 2019

I stand on the shoulders of giants who saw the world as it was and resolved to make it better. Here’s to living up to the example they set.

Lesson 3: your legacy is determined as much by how you make people feel, not just what you do.

— Brian Wallach (@bsw5020)

I woke up the morning after the award ceremony in my own bed in Chicago, exhausted.

I spent the day with our girls, family and friends just being a dad, a son and a jungle gym.

That night I lay in our bed and watched a show with our girls.

— Brian Wallach (@bsw5020) November 11, 2019

November 11, 2019

Our youngest lay her head on my chest and our oldest lay her head on my legs. As the show came to an end a cartoon cat turned to a little girl in the show and said, “you make me happy.”

My oldest turned to me and said, “Pappa, you make me feel safe and as if we can do anything.”

— Brian Wallach (@bsw5020) November 11, 2019

That. That is what I want my legacy to be. And with that back to work. #WeCanDoAnything

— Brian Wallach (@bsw5020) November 11, 2019