There was a time when the pain felt so internal and confusing that I didn’t have language for it. Before there was a diagnosis or name for what we were experiencing, there was just a feeling. Something was off. Something wasn’t right. And my instinct was to keep it to myself. Not because I didn’t want support, but because I didn’t understand what I was seeing and couldn’t describe it. It felt too abstract and far too personal to share. And maybe, if I said it out loud, it would make it real. I certainly wasn’t ready for that. I also wanted to protect my husband. So, I chose to keep it close to home. Looking back, living in silence was one of the most isolating and worst parts of this journey.

Connection helped shift everything. I was introduced to Franne, a woman whose husband Paul, had young onset dementia. Being with someone who simply got it was what I needed to start feeling human again. I didn’t have to explain anything or find the perfect words. Franne just understood. It’s difficult to describe that type of connection unless you’ve felt it. It doesn’t fix anything, but it changes everything. It was the first time I realized that maybe I didn’t have to carry this alone. And it gave me the courage to take bigger, braver steps.

From there, I slowly stepped outside of my comfort zone. I attended an educational conference on frontotemporal dementia. I met families walking a similar path. I listened to researchers, clinicians, experts, and caregivers. For the first time, I began to understand what we were facing. Education gave me language, but connection gave me strength and hope.

Advocacy came later. Not because I had a plan, but because I couldn’t unsee what I was now observing and experiencing. The lack of support and guidance for families felt inhumane. One day, I read about a New York senator, Michelle Hinchey, whose father had had the same diagnosis as Bruce—primary progressive aphasia. She was working to have New York recognize FTD Awareness Week through a resolution, standing on the floor and educating her colleagues while sharing her personal story as a daughter.

Watching her take her pain and turn it into purpose deeply moved me—especially in the way she was honoring her father. It made me realize that so many advocates are doing this work to take their power back. Like them, I won’t let FTD continue to bully us or the people we love. We are standing up to it. That was the lightbulb moment for me. If Senator Michelle Hinchey could do this in New York, how could we get this done in California?

I didn’t know anything about advocacy. I learned as I went. From other advocates. From AFTD and other organizations. From the community. I even had to go back to my fifth-grade self and remember how a bill becomes a law! And somewhere along the way, something shifted again. The pain didn’t go away. But it started to move.

That movement eventually led to launching The Emma and Bruce Willis Fund for Dementia Research and Caregiver Support. For better or for worse, FTD is something I live and breathe every day, 24/7. I find myself in rooms with families, researchers, scientists, and policymakers, people working from every angle to better understand this disease and support those living with it. Going all in felt like the right next step. My hope with the fund is that it will help build a future where FTD is understood, and every caregiver has the support and tools they need to thrive.

I often think I could step back. I could choose a quieter, more peaceful path and stay inside my comfort zone, free of beta blockers. But what I’m seeing gives me energy and, at times, pure excitement. I didn’t think energy and excitement could ever exist in the same sentence or space as FTD and grief, but here we are. That, in itself, makes me happy. It’s what helps balance the scales in my life. Grief, pain, purpose, and hope. Watching other advocates do their part to make this easier for the next family reminds me that there is hope.

People often tell me I’m strong. I appreciate that, but the truth is I was anything but strong in the beginning. I was overwhelmed. I was scared. I was a mess. And those moments still come back. Grief doesn’t disappear, it just changes shape. I’m not sure if that’s because I’ve built a muscle around it or if I’ve simply learned how to move alongside my grief. Either way, I know that advocating for my husband, our family, and others walking this path has helped me carry it.

I’ve also learned that there isn’t one way through this—what helps one person may not help another. But for me, it started with connection, and it grew into purpose. And somewhere in that process, I found moments of hope and not the kind of hope that ignores reality, but the kind that lives alongside it.

You don’t have to have it all figured out. You don’t have to be ready to share everything. But if you can find even one point of connection, one place to step outside of the silence, it can change the direction of everything.