Throughout her career, AFI Faculty and alum Heidi Levitt (AFI Class of 1987) has focused on the perfect elements to tell a story – collaborating as a Casting Director with filmmakers as varied as Haifaa Al-Mansour, Rodrigo García (AFI Class of 1986), Sally Potter, Oliver Stone and Wayne Wang. Her latest project – a feature documentary called WALK WITH ME – brought that focus home. Two years ago, after she learned of her husband Charlie’s diagnosis of possible Early Onset Alzheimer’s and Lewy Body disease, Levitt decided to open up about it, with the hope of eradicating some of the stigma and misunderstanding surrounding the diseases. Consequently, she and her family have embarked on a three-year journey to document what living with this illness is really like.
AFI spoke with Levitt about combatting stigma of Early Onset Alzheimer’s by making WALK WITH ME, directing a feature for the first time, and the rewards and challenges that production has encountered along the way.
AFI: Tell us a little about the inception behind your new documentary WALK WITH ME. Why did you feel compelled to make this film?
Levitt: I realized that we needed to use our privilege as storytellers to change the narrative for people living with this disease. My husband was a graphic designer and editorial art director. He was and still is a visual communicator and communicates best now through his Instagram. He has lost some executive functions so using his computer and doing some more basic tasks that came so easily are now off limits, but the iPhone is still intuitive to him and he has been using his Instagram to document his journey. I felt it was important as a family that we show that life is not over and that we are portraying a universal story shared by over 6 million people in America and 50,000,000 globally.
This is not the film I ever wanted to make, but I feel it is the film I must make for us, and everyone touched by a disease like this that knows no gender, no race and no border. And, most importantly, this debilitating and ultimately fatal illness is not obvious to most people at first and that stage can last years. Yet, it is still there and terribly challenging for the people living with it and their caregivers. Imagine not remembering how to count, how look up an address, forgetting what utensil to use when eating, not remembering your own birthday or your spouse’s name. This can all be emotionally debilitating even though most people won’t pick up on the struggle.
Making this film will also force people to understand that there has not been enough attention or funding given to research in this area and we have not had a new drug on the market since 2003. There is controversy in the science community about the research in the field and the FDA standing in the way in some cases of investigating drug trials on people who are not yet showing symptoms and those in very early stages.
AFI: In what ways are you looking to combat the stigma surrounding Early Onset Alzheimer’s through this project?
Levitt: By telling our story and being honest about our day-to-day life, we will shed the stigma. I think it is important to see that the diagnosis doesn’t mean you curl up into a corner. We need to see people with disabilities as people and not disabled, and in many ways the early stages of the disease are just that. I also don’t believe we need to separate people who have memory and executive function issues and send them to “memory care” hospital wards, but rather we need to find a path to acceptance and inclusivity. We need to allow each person to be themselves and preserve their essence as best we can.
For Charlie, I help him now tag his Instagram and I have become a bit of a ghostwriter at times. I see he makes mistakes and I just have tried to learn to let things go and let him express himself as best he can and allow myself to be there as a backup. The issue here is that it is hard to accept the truth that his brain will continue to deteriorate and there is no cure. Making this film will allow people to see Charlie and others we meet on our journey as people and not as patients.
AFI: Tell us a little bit about how you connected with cinematographer Lisa Rinzler and what that collaboration has been like on WALK WITH ME.
Levitt: Lisa was an acquaintance and a woman I long admired as a cinematographer when few women were working in that role in our industry. We worked on a short film together in the late ’80s and both of us worked separately for two visionary artists, Wim Wenders and the late great photographer Robert Frank. In addition to our connection to both Wim and Robert, we also have a shared artistic sensibility and I approached her almost immediately. Lisa had moved from working on narrative films to documentary and, like me, wanted to use a narrative sensibility in shaping our documentary over at least three years to show a progression in our story. Lisa is an empathetic person, and her filming shows her sensitivity to my whole family. She was able to bond individually with each family member, and I am grateful to have her collaboration.
AFI: How did Academy Award®-winning documentary filmmaker Alex Gibney become involved as an executive producer and what has working with him been like?
Levitt: Alex and I met many years ago through a mutual friend and filmmaker, Wim Wenders, and we have been collaborating on a project called EXILES ON MAIN STREET, an anthology of dramas based on short stories about immigrant and refugees’ experiences by award-winning authors. The series has been a dream project for me. Sundance /AMC channel was originally going to make it a couple of years ago when, unfortunately, there was a change in leadership at the network, and the anthology series was placed in turnaround.
When I decided we needed to make this documentary, I approached Alex since he is the person I knew best in the documentary world. He couldn’t have been more kind offering to executive produce when he read the proposal I wrote in the winter of 2020. He felt that there would be a place for this personal story on a topic so many would connect to. Alex, Lisa and I met last March in New York as the pandemic was just hitting and the country was shutting down. It became clear that it was not the right time to pitch the project, so we had to pivot our strategy. I saw changes starting to happen and knew that we needed to film. We approached Film Independent for Fiscal sponsorship and were able to raise funds to begin the project. Alex has been a wonderful mentor and guide, giving us feedback on material, and as executive producer he will also help us as we move forward to find the right home for the project.
AFI: What is the power of a documentary, and how do you hope your film will impact others who are experiencing health challenges similar to Charlie’s?
Levitt: I think the power of documentary is allowing the filmmaker the space to explore several story threads and then weave together what will become the most impactful story. I am in awe of the process that has already taken me from deep scientific exploration to spiritual inquiry to philosophic questioning of what is acceptable in aging, what is the connection of the soul to the brain and how does memory inform who we are.
The documentary may take us beyond our borders to visit families in South America where families have been dealing with this disease for over 200 years as scientists have recently discovered a rare genetic mutation that originated with the Spanish Conquistadors and was brought to Colombia and Mexico where family members with the mutation developed early onset Alzheimer’s in their 30s and 40s.
As a documentary filmmaker, I am open to exploring and testing out all of these narrative threads – as long as I can keep raising money, and then we will see what will work best for our story. One thing I do know is that our film is personal, but through our personal lens we will also come in contact with a bigger story of how many other people are experiencing what we are facing in different circumstances and cultures.
AFI: What stage of the process are you in for WALK WITH ME, and what has been the biggest challenge so far? How can everyone in the AFI community support this incredibly personal and universal project?
Levitt: We are in the beginning of year two of filming, and I am hoping by the fall to have a better sense of where we are going with the story and know who our characters are. I am currently on my way to Macon, Georgia, to meet another family dealing with Early Onset Alzheimer’s. This family is very different from my own and, when we met on Zoom, Charlie felt a connection to Arthena who also has Early Onset Alzheimer’s. I am curious to see if we can find other common ground other than just Alzheimer’s, and I am eager to see how Arthena’s husband copes. Later this summer, we will return to Boston and Mass General Hospital where we will regroup with neurologists and researchers and also travel and find the places where we are able to reconnect to nature like in our family home in Vermont.
Later in the year or early 2022, we hope to travel to Colombia with a neuroscientist who is advising us as well as the lead American scientist studying a drug treatment trial going on in Colombia where the community has had this rare genetic disorder for generations. It will be so interesting to visit a different culture that has accepted Alzheimer’s.
The challenge of course is funding as we started out of the gate during the pandemic, but we recently received a small grant from Jewish Story Partners and, as we continue to film this summer, we will be able to approach more funding and streaming opportunities.