Since her husband Bruce Willis was diagnosed with frontotemporal dementia (FTD) in February, Emma Heming Willis has been speaking out about the shame that she has felt ever since the diagnosis.
The model mentioned in an essay that she had written herself for Maria Shriver’s Sunday Paper how fortunate she is as a caretaker to have access to specific physicians and medical specialists who may not be available to other people.
“Knowing that I have resources that other people do not causes me to battle with feelings of guilt. “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 are able to do that,” Emma wrote. “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 said further. “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 said, “I want people to know that whenever I hear from another family that has been affected by FTD, I hear the same story of grief, loss, and immense sadness that our family has experienced echoed in theirs.” It is very essential to me to be an advocate on behalf of those families that do not have the time, energy, or resources necessary to campaign for themselves.
In the piece, Emma explains how one of the things she’s learnt on her never-ending journey is the significance of community, which is one of the lessons she shared. She claimed that at first it was difficult for her to figure out how to break the news to the public about Bruce’s illness. However, once she told others the news, she reported feeling a sense of relief.
“Suddenly, I wasn’t alone anymore and I could seek the support Bruce, myself, and our family so desperately needed,” Emma wrote back.
“With a specific diagnosis, you have a chance to find a community,” she remarked later on in the conversation. You have the opportunity to interact with those who quickly comprehend your narrative. It is not even necessary for you to explain yourself. The members of the FTD community that I’ve spoken with and interviewed have an incredible amount of compassion, and they are so motivated to make things better for the families who come after them.
Emma said that after the diagnosis of FTD in her husband, she became active in the fight to raise awareness about the disease. She said that witnessing other individuals raise awareness for topics that were important to them served as a source of motivation for her, saying, “I’m inspired and motivated by the fact that other people are doing the same thing.”
In spite of the fact that Emma has reconciled herself to the reality that there is now neither a cure nor a therapy for FTD — “Research on the disease is evolving,” she pointed out — her objective is to educate not only herself but also others in an attempt to find a solution.
“To speak with UCSF’s Dr. Bruce Miller—a pioneer in FTD research—and to listen to him talk concerning what he calls the ‘obsession this community’s researchers have with finding treatments and a cure’ is to be inspired,” stated the researcher. “The first disease-modifying treatments for FTD are in clinical trials right now, actively recruiting participants.”
In the hopes of putting a stop to FTD, Emma further said, “Now is the time for our community to take action to end this disease.”