It would be very easy to be hopeless right now. As a woman, a Jew, a mother of Latino children, a mother of a child in the LGBTQ community, and simply a human being, it’s a scary time. I feel like we’re living in the prologue of a sci-fi post-apocalyptic book – the kind of book I have zero interest in reading, let alone living in.
The problem is, I believe in hope. It sustains, energizes, and motivates me. Even in my darkest days years, when my daughter Dalia was getting sicker and sicker, I refused to give up hope.
Of course I hoped for a cure. But that particular hope was more of a dream, so I added other hopes to the mix. I hoped that Dalia wasn’t in pain. I hoped she knew how much love she exuded and how much was pouring back into her. I hoped the nurse would show up when I was exhausted and that the machines would stop beeping so Dalia could fall asleep. There were infinite tiny things to hope for every single day. And many of the things I hoped for came to pass.
This week, right after the most hopeless election imaginable, I had the opportunity to present to a group of students at Boston College and Perkins School for the Blind about Dalia and my memoir, “Breath Taking.” The Perkins students came from all over the world – Iran, Croatia, Kenya, Mexico, Bhutan, The Philippines. Everybody there was learning how to work with children who have severe and multiple disabilities. After 9 months, they return to their home countries having forged a united global network of trained leaders in this space.
They asked the most thoughtful and insightful questions. My favorite was “What would Dalia want us to know?”
I left the class feeling hopeful, and it reminded me of how many people are quietly working to change the world. They might not make our newsfeeds, but they are making a real difference.
I Don’t Know How You Do It
I met my guest on this week’s episode of “I Don’t Know How You Do It, Mackenzie Abramson, at the Global Genes conference titled, “There’s No Place Like Hope.”
It was a fitting place for our conversation, which covered medical gaslighting, personal and professional advocacy and yes, where to find hope.
Mackenzie is a rare disease advocate who spent more than 20 years searching for her own diagnosis, facing intense medical gaslighting along the way. She endured 30 surgeries, a mental health crisis, and endless battles to be heard and taken seriously by the medical establishment.
Yet Mackenzie refused to be dismissed. She earned her master's in public health and went on to work on global health initiatives in Rwanda, Egypt, and on the COVID-19 response in the U.S. Turning her pain into purpose, Mackenzie is a testament to the power of unchosen resilience and the transformative impact one person can make.
I’m so glad you’re part of this community.
With grit and grace — and hope,
Jessie
Thank you for sharing this inspiring story.