For many of those touched by ALS, the impact is a lasting one. Many who have known someone who has passed away from ALS look to find a way to give back to the fight to end ALS, be it through volunteering, spreading awareness, or donations. The timing of when they come to the cause is as individual as their stories; some are ready soon after losing someone, others find that time brings them back. Each find their own way, in their own time.
For Byron von Rosenberg, the journey with ALS began 20 years ago, when his father was diagnosed with the disease. He passed away in July 2002. Byron’s very first poem, “Look at My Hands,” was written about his father’s struggle with ALS. The poem is a sort of conversation between God, a father, and son, and remains a guide to Bryon to this day.
From that poem and a lifelong love of words, other poems and stories came, including his most well-known poem “I Don’t Want to Kiss a Llama!” Since then, Bryon has made this love of words into a 2nd career of sorts as a poet, author and storyteller.
But having been touched by ALS, Bryon wanted to find a way to give back through his work. Through the end of October, he is donating $1 from every book sold to the ALS Association St. Louis Regional Chapter, and is planning more opportunities to support the work of the ALS Association in the upcoming months.
“There are people who can give a lot more money than this poor poet. But I can and will give something financially, and I can give more by restoring laughter for a moment to those who thought they’d never laugh again,” Bryon says. “That possibility fills me with joy.”
Indeed, Byron still sees his father’s fingerprints on his life, stories and poems, including his journey with ALS.
“I am touched by ALS every day,” Byron says. “My father’s illness and the way God reached out to me to give comfort will always be with me. And with many others I hope and pray.”
On his website, Bryon notes that he sees sharing the story of his father and donating a portion of sales to our Chapter as way of “turning tragedy to joy.” In fact, he sees the influence of his father as a direct connection to the stories he shares and the joy they can bring.
“I can imagine my dad finding the llama book in the heavenly library and giving (his granddaughter) Erin the words to say to me so I’d write the book. And I know he’d have loved reading it to his grandchildren.” Byron says. “Yes, the connection has been apparent to me, but it continues to grow and develop every time I do a book signing or storytelling session. It’s like a filter through which I can see people with eyes of grace. It just keeps getting better.”
You can learn more about Bryon and his work at his website: https://idontwanttokissallama.com/, and if you like what you find, a reminder that through the end of October he will donate $1 per book sold through the website to our Chapter.
Those impacted by ALS often find a path to give back in their own way, in their own time. For Bryon, giving back happens to involve llamas, and love, and laughter. And at the end of the day that’s quite a story for a storyteller to tell.