People want to hear stories. They want to hear our stories — they want to know where we are from, what we are doing, who we love, and where we are going.
In a recent meeting, our ALS Texas team shared how much we truly enjoy really getting to know our ALS Texas friends. ALS is a big chapter in your journey, but it is certainly not the entire novel.
I have shared before that the Apple TV show, Ted Lasso, is my absolute favorite. I jumped on board early on and was motivated and inspired by the leadership, wit, and wisdom, of the show’s main character and coach, Ted Lasso. In fact, I ordered a batch of stickers with many of his most popular quotes-and have shared them with my family both here and in the United Kingdom (where the show is based) and am now sharing one of those stickers with you, too! It’s a twofer-as it has two of my favorites. “Be curious, Not Judgmental” (original credit to Walt Whitman) and “Be a Goldfish” (original credit to Ted Lasso; referring to having a ten-second memory and letting things go). If you’re curious about when Ted used the Walt Whitman quote, google “Ted Lasso dart scene”. Not only should we share our stories, but we should ask others about theirs. Stories help define who we are. To know someone well is to know their story—the experiences that have shaped them, and the challenges and obstacles that have tested them.
When we want someone to really know us, we share stories of our childhoods, our families, our school years, our first loves, and the things that have molded and shaped us along the way. And when we want to really know someone, we listen. We are curious and without judgment, as the journey was not ours to travel.
We also write our own personal narratives or stories. In her book, Rising Strong: The Reckoning. The Rumble. The Revolotion. author Brené Brown shares that “The most powerful stories may be the ones we tell ourselves. But beware—they’re usually fiction. Storytelling helps us all impose order on chaos—including emotional chaos. When we’re in pain, we create a narrative to help us make sense of it. Our stories are also about self-protection.” She adds several tips for helping to re-write or re-frame your real narrative, so you are then ready to share it with others. Here is an excerpt:
Write it down.
The most effective way to become truly aware of our stories is to write them down, so get your thoughts on paper. Nothing fancy—you can just finish these sentences:
The story I’m making up…
My emotions…
My thinking…
My body…
My beliefs…
My actions…
It’s important that we share our stories. You may not believe it, but your story can help bring hope to people who are hopeless. Your story is unique, and yet within it, at least one other person will discover a shared connection. Sharing our stories requires both courage and vulnerability, and the desire to connect with others.
Our ALS Texas groups and workshops are perfect places to connect with others and share your stories. Not only are you sharing your ALS chapter, but we encourage you to share the other chapters, too! Those chapters mentioned above and more-the things you enjoy most, your families, your greatest adventures, your favorite places ever visited-the list goes on and on. You can always find all oour upcoming groups, workshops, and events on our ALS Association Texas Chapter website at alstexas.org/virtual-events!
I’d also really enjoy reading or hearing your story, and invite you to share with us! Just email me.
-Tonya Hitschmann, Director of Community Programs
Thank you, Tonya for such a great reminder to tell our stories! My husband, Mike, who fought the good fight against ALS and ALL the monsters that show up with this disease, reached the end of the fight. He passed away on February 7th of 2022. He wanted his story told not as “he lost the battle to ALS” but rather as “he fought the battle with ALS until the very end!” He didn’t give up and he taught us all a lesson in “riding the wave,” (quoting a song from his favorite band Pearl Jam). He even had a tattoo of this on his arm! 🙂
Mike’s story was beautiful! It was definitely full of challenges, but as Tonya reminds us, these are the exact things that brought our family closer and left a legacy of strength, endurance and courage. I will forever love you, honey. – Pat Givens
Hi, Pat! Gosh-thank you so much for sharing Mike’s story, your story, and your family’s story. ALS is most definitely not an individual disease-every single family member is affected by the experience, and it becomes part of your ongoing story.
And just as I mentioned in the blog, when we share our stories, there is always someone who can connect with at least one part of it. I love learning more about Mike’s story, and some of his favorites, like Pearl Jam. Riding the wave is also one of my husband’s favorite songs, and he also loves Pearl Jam. No tattoo related to Pearl Jam, but he DOES have one related to the Red Hot Chili Peppers! 🙂