In a particularly challenging scene of Heidi Levitt’s Walk With Me, the director has lost her husband in the street during their regular walk. A phone call comes from him – he has gone the same way they always go, he says. Except, of course, he hasn’t. This sort of incident is something that happens every day for Levitt and Charlie, who has early onset Alzheimer’s. Tender and moving, Walk With Me captures Heidi’s decision to document their journey, at home, in the doctor’s office, with friends and family, the good days and the bad. Through all of this, Charlie radiates as leading man, at times against his own will – he is funny, curious and resilient in the face of adversity. But of course, this story is as much about him as it is about Heidi, who distinguishes herself as writer, director and subject, at Charlie’s side at all times, walking with him through thick and thin. What About Birdy sat down with Heidi to discuss what it was like to work with her family, letting herself create in a life in which she had only ever enabled others’ creativity, and the need for a movement to help both Alzheimer patients and their caregivers – now.
WAB: What was your working relationship like with Charlie? Did he play a part in writing the script or suggesting ideas?
HL: I think first and foremost the relationship was to coerce everybody in my family that they needed to do this with me, because we were doing it for a greater good. We need to talk about it, and I have the privilege, the experience [to make this film], and because this disease affects 55 million other families like us. I felt Charlie was resisting me, you see it in the movie – but then he would turn to the camera, and he would be great. He agreed to it, because I think he understood this had to be his job, seeing as he couldn’t get one, and we needed to make money. But then Covid hit and Black Lives Matter happened, and there was no funding. I ended up raising the money through foundations, and we did it all ourselves. But I talked to him a lot about the different ideas I had and what we wanted to show. For instance, we’re on the train several times in the movie – we love to travel, and we loved the idea of finding other people like him. He really didn’t want to be alone, and since I’m a casting director, I put out an open call to find other people who might have Alzheimer’s, so that we could share their stories. That’s how we met Arthena, who we go to see in Georgia [in the film]. We fell in love with her, and I’m so happy we included her story, because she’s become part of our story. But this was during Covid, which made it complicated to film, and after meeting with her, I realised that I was having a hard enough time just finding the story in our family. If I had too many families, it was going to become too much of a pastiche and we weren’t going to be able to get intimate. So I went from the macro to the micro because the power in this story is to be as specific and personal as possible.
WAB: Walk With Me is a very honest and raw portrayal of your family, and you mention at one point being “tenacious”. Were there some times where you doubted yourself while filming or instances you hesitated to include?
HL: It’s very raw, and I think it’s difficult to include my family in a way that makes them so vulnerable. My children are proud of me now, but it was hard for them at the time, and maybe I didn’t acknowledge how hard it was to have them come on this journey with me. Motherhood is really central to who I am, I nurture and care for people around me, and you can see that I never put focus on me. But when the film came out, I realised the focus was, in fact, on me. It’s a weird dynamic for me to embrace, and the kids have helped me embrace it – they tell me that I need to do it for myself. And they’re right – I’ve never acknowledged my own artistry because I’m so used to supporting others [Levitt is a casting director who has worked with the likes of Sally Potter and Oliver Stone]. I’m the enabler, I make everybody else feel comfortable. But creating is uncomfortable for me, still. I feel selfish. But I needed to tell my story and I realised that that is helping me cope, and helping me have my own purpose as much as I wanted the film to give Charlie purpose. There’s a movie in the release of a movie. The story doesn’t stop right now. My story continues to grow as my passion for advocacy, for people with Alzheimer’s and caregivers does.
What is there to be said about your role as caregiver in Walk With Me?
I defined myself as mother, daughter, casting director, now director and writer, but I didn’t put caregiver in there. But that is what I am doing 36 hours a day [a term drawn from a guide on navigating Alzheimer’s by Nancy L. Mace and Peter V. Rabins]. The amount of care I give is so intense that you don’t see it. When people see Charlie, they tell me he looks great. But he can’t get dressed by himself. Emotionally, he’s there – he might struggle to find the words but his emotional intelligence and intellect are still there. But his capacity to do simple things is gone. It’s so difficult because you don’t want to shame the person, you want to help them do it, but you have to slip it in quietly so that they don’t feel infantilised all the time. Saying you’re a caregiver is important because we need to have public policy in every country to be better to pay for caregiving. We don’t acknowledge it – Canada is better than the United States, but we’re not anywhere near where we need to be. There was a tax cut in the United States that was in Congress and unfortunately got lost – but I hope to bring it back. We cannot do this alone. And I need more help. I can’t keep doing this. This is something I hope people will see and talk about. Of course, we also need more research to understand this illness, which has been around for more than a hundred years.
WAB: What can the public do to help?
HL: Go to our website walkwithmedoc.com, and sign up to stay in touch. We are trying an impact campaign next where I’m going to be playing this for Congress in the United States. As a dual citizen, I’m also talking about going to Parliament in Canada, and I’m hoping we can start a movement. Political change happens with movements. I went to college in New York in the 80s during the AIDS crisis. People were afraid then, but people are living with AIDS now. We need to come together as a society and acknowledge that Alzheimer’s has been around for over a century, and we have to do something about it because it’s only growing exponentially. I want people to talk about it, because talking about it raises awareness. Caregiving is for everything. Rosalind Carter created an institute for caregiving that is now part of the Carter Centre, and she said that there are four kinds of people: people who are caregivers, people who will be caregivers, people who were caregivers and people who will need a caregiver. We need it for everything. And we don’t acknowledge it, and that’s not okay. I want help so that I can be the wife and not just the caregiver. The only way to do that is to create change. In the 80s, Larry Kramer and Act Up created art. Culture, like Kramer’s The Normal Heart, brought awareness, and as a result a lot of money got thrown in. The gay community had no one fighting for them, so they fought hard and made it everyone’s issue. It was there that they discovered AZT and something that could treat people. There’s got to be something that we can discover for this, and what it’s going to take is a movement. So we’re hoping to gather momentum with impact screenings. If people want impact screenings, they can write to us and we’ll set it up for them. I’m also talking to different distributors, but I’ve been in independent film most of my career and it’s tough. People aren’t going to movie theatres, but being with an audience is being with the community and that is so important. But at the same time, we still need to find ways to share this. So the film will be available online and we’ll hopefully do some theatrical screenings – we’ll be opening at the Laemmle in LA on October 30th.
WAB: There’s a beautiful scene in which you show your son Charlie’s diaries from his time in Florence as a young adult. In that moment, he discovers a new facet of his father that he hadn’t seen beforehand. Is there anything about Charlie that you discovered while filming?
HL: I discovered I’d cast a great leading man! I didn’t know he was going to hold the camera that way. But for me, every time I get to watch the film again and see our past, I fall in love, because the day-to-day is so hard now. I work late at night, because I need some alone time, to really think and write. I feel the hardest for my children, because I wish that they knew him when he was twenty. He’s still the same person, but the way he reflected on things, the way he spoke, I realise now they never saw that. But in the end, what I discovered was my own capacity and his spirit and positivity, which is allowing him to keep being in the world and appreciating what he can do rather than what he can’t do.
Walk With Me screened at the Edinburgh International Film Festival. To learn more about Heidi and Charlie, and what you can do to help, go to https://www.walkwithmedoc.com/.
