In an essay published in Maria Shriver’s Sunday Paper, Emma talks about the “guilt” she feels knowing that there are other people in a similar situation as her without the resources the Willis family has.
“I struggle with guilt, knowing that I have resources that others don’t. When I’m able to get out for a hike to clear my head, it’s not lost on me that not all care partners can do that,” she writes. “When what I share about our family’s journey gets press attention, I know that there are many thousands of untold, unheard stories, each of them deserving of compassion and concern.”
However, Emma hopes that generating attention for frontotemporal dementia, known as FTD, helps other people “feel seen and understood.”
“I want people to know that when I hear from another family affected by FTD, I hear our family’s same story of grief, loss, and immense sadness echoed in theirs. It’s important to me to be an advocate on behalf of those families who don’t have the time, energy, or resources to advocate for themselves,” she adds.
Emma says that she has “more hope today than I did after Bruce was first diagnosed.”
“I understand this disease more now, and I’m now connected to an incredible community of support,” she continued. “I have hope in having found a new purpose—admittedly one I never would have gone looking for—using the spotlight to help and empower others. And I have hope in how our entire family can find joy in the small things, and in coming together to celebrate all the moments life has to offer.”
Although Emma says she has “so much to learn about FTD” she is finding her footing concluding with, “As much as I grieve this experience daily—as I know so many others do—I also know that it has made me stronger than I ever thought possible.”