"I struggle with guilt, knowing that I have resources that others don't."
Days after Bruce Willis's daughter, Tallulah Willis, gave an update about the actor's frontotemporal dementia, his wife, Emma Heming, wrote about feeling "guilt" regarding the family's access to care and help. In an essay for Maria Shriver's Sunday Paper, Heming described the family's approach to Bruce's diagnosis and how things have shifted as the condition progressed from aphasia to frontotemporal dementia.
Heming, a model and health advocate, opened up about the privilege that she has to take time for reflection by going on hikes. She also touched on the opportunities that she and her family members have to speak about Bruce and share messages of hope as other patients have to handle the condition on their own or with limited resources.
"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," Heming wrote. "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."
Like Tallulah, Heming noted that she wants to share the family's experiences so that others can "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," she continued. "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."
Heming also added that since receiving word of her husband's initial diagnosis, everyone in the family has learned more about dementia and is happy to share that knowledge with anyone going through a similar situation.
"I understand this disease more now, and I'm now connected to an incredible community of support," she added. "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."
"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," she finished.
Back in September, Heming appeared on the Today show, where she spoke about how much Bruce's dementia had affected the family.
"It’s hard on the person diagnosed, it’s also hard on the family. And that is no different for Bruce, or myself, or our girls. When they say this is a family disease, it really is," she said. When co-host Hoda Kotb asked Heming if Bruce was aware of what was happening, Emma answered, "It's hard to know."
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