Emma Heming Willis says she has more hope today than she did when her husband and Hollywood star Bruce Willis was first diagnosed with frontotemporal dementia earlier this year.
Emma discussed her current outlook on Bruce’s condition while sharing several lessons she’s learned through his diagnosis and care journey in a recent issue of Maria Shriver’s Sunday Paper. While opening up about the experience of treating something that currently has no cure or treatment, Emma expressed that one of the key lessons in the time since she announced Bruce has FTD, was that “hope is everything.”
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“I have so much more hope today than I did after Bruce was first diagnosed,” she reflected. “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.”
She added that she also has “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.”
Part of that process of connecting with the larger FTD community has also been realizing that while things can be emotionally and physically difficult at times, she has more at her disposal than other people with FTD and their families.
“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. 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,” she wrote. “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.”
It is an experience that has made her not only “more compassionate,” but able “to hold more space for what others might be going through” — including gratitude and grief. It has also fueled her motivation to be an advocate for the larger community.
“Recently, I met someone who had just learned about FTD in her life. When I first learned about the condition, I didn’t have someone in my corner who understood this experience. The fact that I was able to help connect this woman to the right information and resources was a moment I won’t forget,” she recalled. “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 turned the newsletter into an example of the kind of advocacy work that is possible with her platform, while acknowledging that she still has “so much to learn about FTD, this community and how research on the disease is evolving.”
In addition to providing updates on the current state of FTD research, the Make Time Wellness founder shared how little is known by the public about FTD and dementia in general.
“FTD is the most common form of young-onset dementia and can strike at any adult age — from someone’s 20s through their 80s. But it’s still not a well-known disease — so much so that getting an accurate diagnosis is often a long and lonely process,” she said. “The world needs to know that not all dementia is Alzheimer’s and that not all dementia impacts memory. A disease like FTD presents instead with changes to behavior, personality, language, or movement.”
Ultimately, the former model expressed that in sharing Bruce and the family’s journey, her “goal is to see an end to FTD.”
“There is power in becoming an advocate for this community,” she wrote. “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.”
Bruce’s family initially revealed the actor had been diagnosed with aphasia after announcing he was stepping away from acting in March 2022. Almost a year later, in February, the family provided an update, noting that they had since received “a clear diagnosis” of frontotemporal dementia. Since then, members of his family, including daughters Tallulah and Rumer, have shared their difficult but also touching experiences since the diagnosis.
Emma has spoken out the most, providing regular updates with the public about his progress. In recent interviews, she’s expressed her uncertainty about how much the Die Hard star understands about his diagnosis and reinforced the importance of remembering to take care of oneself as a caregiver.
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