The actor's family announced his frontotemporal dementia (FTD) diagnosis in 2022.
Emma Heming is touching on the beautiful and heartbreaking parts of her husband, Bruce Willis', frontotemporal dementia (FTD) diagnosis.
In a personal essay written for Maria Shriver's Sunday Paper, the mother of two shares her perspective and what she's learned as she and Bruce's family navigate his disorder. In her step-by-step guide, Emma shares the value of community, being aware, and research.
Bruce was diagnosed with the disorder last year, and as a byproduct, aphasia, a brain-mediated inability to speak or to understand speech. According to the Mayo Clinic, frontotemporal dementia "is an umbrella term for a group of brain disorders that primarily affect the frontal and temporal lobes of the brain."
Emma writes about the guilt she feels when she's seeking alone time as a full-time caretaker and mother, while knowing others don't have that freedom.
"I struggle with guilt, knowing that I have resources that others don't," she writes. "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. 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. At the same time, I see that what I share matters to others who may be struggling, and in a small way makes them feel seen and understood."
She continues, "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."
Emma is also candid about the grief that she feels amid the ongoing journey with her husband's diagnosis.
"I’m holding gratitude as well as grief," she shares. "There is power in becoming an advocate for this community. It's something that I want our kids to see me face out loud, working with others, fighting through the stigma and isolation that a disease like this can bring."
Ending her essay, Emma reflects on the hope that she feels now that more research is being conducted, and she and her family have become advocates for FTD.
"I have so much more hope today than I did after Bruce was first diagnosed," she writes. "I understand this disease more now, and I’m now connected to an incredible community of support. 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."
Last week, Bruce's daughter, Tallulah Willis, was a guest on The Drew Barrymore Show, and gave an update on her father's condition and what life has been like, since her, her sisters, Emma and Bruce's ex-wife, Demi Moore, shared his diagnosis with the world.
"He is the same, which I think in this regard I’ve learned is the best thing you can ask for," she said of the 68-year-old Die Hard actor. "I see love when I’m with him, and it’s my dad and he loves me, which is really special."
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