We Are Your Echo
Dear Leah,
The world went silent for a brief period of receiving the message from Hugo about your passing. It went silent… And then it burst like a summer storm of shock, disbelief, heartbreak, fury, longing, guilt, anxiety, and devastation. We read and reread the message. Each time feeling something new.
My mind went to our last conversation. We never really knew what time zone you were in, and I was pestering you about getting the last blog post published. You never told me you were on a vacation in true Leah fashion, and you got it done. Then you asked me how I have been, and I told you the truth. I had shared a few personal legacy projects I was working on. When you complimented my ability to do such projects, I brushed it off, and you said you were not really ready to do those sorts of things–ensenuating it takes a special personality to do it.
And the next day, you were gone. The word legacy echoed and ached in my bones like lightning strikes and rumbling thunder. I know you had a sense of what you built, because you were told many times, but I wished to go back to our conversation to tell you that you were doing the work all this time in your own way. You lived your legacy.
I wish you could have seen it. Maybe you did. But in the aftermath of the storm of your passing, the sisterhood you built, came together in a love so bright, it was felt inside everyone you touched. A warmth that even though our fearless badass leader was gone, because of you, we had a home. That because of you, we can carry your warrior heart with us.
You lived your legacy.
In the Her ALS story chat, members from across the world grieved you in their own way. Some wished they could have met our queen in person, others devastated they will never have the chance. Those who were close to you and had met you shared memories and photos. Your leadership team met urgently, and together we started doing what you would want us to do. To keep your baby running. It was an unspoken gaping hole in the meeting and nobody wanted to hang up. In our bi-weekly meeting, we invited Lauren Kulp, founder of Tandem ALS Wellness, to guide the conversation and help memorialize you.
You were the north star, our guiding light, to bring us home to this community of connection when we felt lost and devastated by our diagnosis. Your vision created a lifeline for our members, some even going as deep as saying this group has been the silver-linning of ALS. You did that. You turned a terminal illness and what could be something filled with hopelessness into a lifeline and silver-linning. And you did all of this fearlessly with a humbleness and poise others wish they had.
And I imagine that it was not always easy… You were faced with the same challenges we all face. So maybe it was a bit of a sacrifice being our leader. Everyone looked to you as an example. You made everything look doable. A wheelchair as a mode of traveling the world, a bipap stylish, a feeding tube chic… Nothing stopped your glow.
Leah, my friend, nobody said it better than Angelina in your tribute podcast on Lorri Carey’s I’m Dying to Tell You podcast. Angelina said, ”I don’t need to do anything to carry her legacy because she’ll remain immortal as long as Her ALS Story exists.” We are a huge piece of your legacy and for as long as ALS is a thing, Her ALS Story will be carrying you with it.
Lauren Kulp adapted a poem just for you to be read at the closing of our meeting. It is adapted from the poem titled “The Dash” by Linda Ellis.
We are your echo. We love you, Leah. Je t'aime! Merci pour tout.
With love,
Her ALS Story Members
