Director Alan Berliner spent five years filming his friend and elder cousin, the poet, translator and professor Edwin Honig, documenting the gradual loss of his memory to Alzheimer’s. The result is First Cousin Once Removed, an illuminating, unflinching portrait of a fractured mind, screening in both Edinburgh and Glasgow as part this year’s Scottish Mental Health Arts and Film Festival. Speaking from New York ahead of his visit to the UK, Berliner discusses his unique relationship with Honig, the impact of Alzheimer’s on a deeply intellectual figure and the crucial role memory plays in shaping our identity.

Firstly, how did the project initially come about? Why did you decide to make this film?

Well, there are a lot of different answers to that. The first is that I had been planning to make a film about somebody else, a woman who has what neurologists call ‘superabundant autobiographical memory’. Neurological scientists in California studied her for many years and determined that she actually did have an amazing memory, literally one of the most unique memories on earth. I went to meet her and wanted to make a film about her because I thought her mind was basically an archive or treasure trove of home movies, because she could remember everything about her life. Give her a date and she could remember where she was, what she did, maybe what the weather was like, what was going on in the newspaper, you know, the issues of the time, the events of the time. Anyway, it didn’t work out.

I was a little sad, somewhat dejected and trying to figure things out, so I did what I always do, I went to visit Edwin [Honig], my cousin Edwin, in Providence, Rhode Island, here in the US. I told him about it and he told me that he felt like he was losing his memory; he had been to the doctor and was a little worried about things. It was in the nature of our relationship that I said, ‘That’s really fascinating, because I’ve been reading and thinking a lot about memory; it’s in the prime of my fascination, my thoughts at the moment. So why don’t we continue talking about it, but next time I come I’ll bring a camera.’ So he said ‘Fine, let’s do it’. That’s the short version of how the film came about.

At the time, were you aware that these memory problems were as serious as they turned out to be?

The truth is that at that time Edwin was going through a phase called ‘confabulation’. Confabulation is when someone who is losing their memory tries to evade or deflect attention from the fact, so they’ll answer questions with questions, or if you ask what day it is today, they’ll say oh, you know what day it is or who cares what day it is, it doesn’t matter. In families, very often people aren’t aware that someone’s actually doing that. In fact, the more clever the person, the more clever the confabulation, even though often it’s unconscious, because they’re trying not to call attention to the fact that they’re losing their memory, even to themselves.

Even though my father lost his memory – it was gone to the point where he didn’t even remember my name – I wasn’t quite sure where Edwin was going to go with his Alzheimer’s. In fact, I thought he was going to live much longer than he actually did. His father lived until he was 95; his grandfather, who’s my great-grandfather, lived until he was 96, but it was clear as the years went by that Edwin’s memory was getting progressively worse, that his grounding in reality was getting progressively worse and that he was getting frailer and getting older.

But still, I must say, it’s very important, that every time I went to visit him, I still went looking and always found Edwin, a poet, my cousin, my friend, my teacher. I never went to visit him without feeling some emanations of wisdom from him, right until the very end. You know, the person is still there; I believe that very strongly. He was still there in some form. Sometimes the circumstances needed to be massaged or coaxed, but there were certain points when I found the core of Edwin.

With Alzheimer’s disease, people often turn to the past and their memories of the person, almost trying to forget about their present reality or present identity. But in your film, you do focus a lot of attention on Edwin as he was in the late stages of his illness. Was that something you were interested in exploring, his change in identity and how that relates to his past?

For sure. If anything, my film proves that memory is the key to the formation of identity. If you don’t have that, then you can’t bring lessons, understandings and meanings out of the past, and you can’t learn from the past. If you can’t understand the consequences of experience, then you can’t bring them into the present. Identity is certainly a function of being able to time travel, but not only from the past into the present. The components of travelling from the past into the present, those ideas of learning, of meaning, of insight from experience and so forth, are all about imagining, preparing for, hoping for and being inspired for this idea of a future. You know, there’s a reason to live another day, there are things to do. One’s still growing, one’s still evolving.

The fact is that Edwin kind of got trapped in a perpetual present. That’s the prison of Alzheimer’s – you end up in a perpetual present and lose your identity because you’re unable to time travel. Memory is the way we time travel – it’s how we translate experience from the past to the present and through into the idea, at least, of a future.

In the film, Edwin comes out with some very insightful, poetic statements, demonstrating that his brilliant use of language remained, at least sporadically, at a very high level.

Yes, a favourite of mine was with the maraca that he plays with my son Eli. I ask him if he remembers playing it and he looks at it and says, ‘I have no night of what I knew in the morning’, and that took my breath away to be honest with you.

Edwin Honig

The role of a poet, in a sense, is to translate those experiences you were talking about into language and ideas, ensuring they do have a future. Do you feel that his poetic nature remained intact until the end?

I think there’s no question. I think all of those things, like where he says, ‘So much is gained, so much is lost’, or, ‘The mind can be blank and still be going. That’s the trouble’. There are so many little pithy statements he makes throughout the film and that’s the poet, that’s the teacher, that’s the mentor, that’s someone who is used to translating both experience and other poems.  These are the vestiges of what he used to do, quite naturally, quite organically, when he had all of his faculties.

Even making up these little spontaneous poetic riffs, like ‘Once upon a time I was an interesting fellow, now I don’t read or write without a bed of jello’, and I’m like, where does that come from? That’s old programming gone awry but it still derives from a poetic grounding; it derives from the bearings of a poetic soul.

Edwin knew as much as anyone that the poet is the person in our society that we look for to give words to things that most of us can’t describe, to experiences that are often outside of language. Edwin was a big believer in the work of art and in the power of words, and the gravitas of the work of art, in particular the poem.

In a way, the film is sort of like a 33rpm vinyl album spinning, but suddenly the speed is getting slower and slower and slower, so it’s distorted a little bit. But I have to say, there’s still music coming out and the music is still really interesting to listen to. Edwin was a poet ’til the end, ’til the end. I firmly believe that and I think it’s in the film.

You’ve said before that you would only have made the film about Edwin Honig and no-one else. What is it about your relationship with him that makes you say that?

Well, he’s my mother’s first cousin, my first cousin once removed – at least that’s how the genealogists describe it. He’s two generations – some people would say two and a half generations – separate from me, 36 years my senior. It’s not a film I could make about my mother, you know. I did make a film about my father but this is not the kind of film I could make about my mother or really anyone else.

It has to do with Edwin and I, our relationship, our conversations, many of them grounded or centred around Edwin’s belief that art should get to the bottom of things, should get to the heart of the matter, should never be afraid to take risks. I just want to say that Edwin was a friend, a cousin and a mentor to me, all of those three things together, and more.

I was thinking about this the other day and, I don’t even know if there’s a word for it, but I would say that something about our relationship made him close enough and something about our relationship also made him distant enough for me to do this project. I don’t know how to describe it other than that. But it was a perfect distance, almost like the earth is the perfect distance from the sun. If we were closer we’d burn; if we were too far away we would freeze. Somehow my relationship with Edwin was just situated just right.

We were close enough because we were family. We were the only artists in the family and that was an important bond. We just had a connection, a transcendent connection, which made everything feel very organic and very natural, and I hope the film shows my love for him from the beginning to the end. I mean, I’m always concerned with his dignity, I’m always concerned with honouring my relationship to him, I’m always concerned with the transcendent nature of our relationship. He’s my cousin, my older cousin, he’s my friend, he’s my mentor, but it’s also artist to artist.

If I may be so bold, it’s that I understand his work, I understand who he was. And this is what I do, I make these kind of films that try to, as Edwin would say, get to the bottom of things, take risks, that aren’t afraid to tread in this very, very delicate territory of human frailty, getting to the edge of memory loss and what happens to us. And no-one is immune from this; it could happen to anyone. Edwin would know there’s not a person alive in their prime who is. You know, Edwin had a big prime and no-one would have ever imagined that he would be in the position that he found himself in at the end of his life.

You shot the footage for First Cousin Once Removed over a period of five years, so, as a filmmaker, was it ever frustrating over that time period, going in and speaking to Edwin, knowing you wouldn’t just be able pick up where you left off?

No. My answer is a quick and a very clear no, because every time I went, I wanted to meet Edwin where he was at that time. If we went there and he was sleeping, so he slept. If it was all day, then he slept all day. If we went there and he was just wanted to be alone and look out the window, that’s what we did. I always tried to let Edwin determine the agenda; I had no expectations.

 There was one time where he was sleeping most of the day. He was whistling and making sounds; he didn’t sound like he wanted to talk at all. And I said, ‘OK’, and we actually packed up the gear at about six o’clock in the evening to go and have dinner, go back to the hotel. Edwin was having dinner with the caregiver and she was giving him his dessert when I went to say goodbye and I noticed that after every bite Edwin said the word, ‘OK’, as a signal to the caregiver that he was ready for the next bite. He hadn’t said any words the whole day but something about that – I don’t know whether it was the sugar in the cake or the chocolate, the fact that he was just getting his favourite food, or, I don’t know, biorhythms, I’ve no idea – but I just said to Ian Vollmer, the cinematographer who was with me, ‘You know I just have a feeling that something about the language centre of his brain has just woken up. It’s just a feeling I have. I’m not sure, but let’s unpack the gear.’ And Ian was hungry, he wanted to go, to leave, and I said, ‘No, let’s stay’. And the truth is, once the dessert was over and we set up the camera, I have to say, Edwin and I had one of the most amazing conversations we’ve ever had, for 45 minutes. I never would have predicted that, as I say, prior to that point.

The word frustration was never the case. I was always there to chronicle Edwin where he was, whatever his experience was at that particular visit, that particular day, that particular point in his life, that particular point in his metamorphosis through Alzheimer’s.

When it came to bringing all the footage together, was it clear then how you wanted to present it or did you have to go through another process to think about what kind of film you wanted to make?

I’m someone who edits very much through trial and error. I have a lot of different things  and I’m not afraid to try things that don’t work. I suppose an important strategy I had in conceptualising the film was that I was going to give it what I call a cubist timeframe. I wasn’t going to make it chronological. And so with doing that, I was going to be free to intercut Edwin at any point along the trajectory, along the arc of his time and of my time with him. It allowed me a lot of freedom, but it also allowed me more opportunity to make discoveries between the various Edwins, the various selves of Edwin, if they could have announced themselves across his illness, and it allowed me to look for ironies and make connections.

Alzheimer’s is a progressive disease but it’s not a linear disease. I could go to him three months from any visit, and he would be potentially more lucid than he was three months ago, so the idea of chronology didn’t really hold. Giving a sort of cubist temporality allowed for, I think, a more complex experience of Alzheimer’s, a more complex experience of Edwin, a more cinematic reckoning with the complexity of being human.

The truth is, each of us is a collection of multiple selves. Even as I sit here now, I can remember being 11 years old and doing certain things or experiencing certain things, but also there’s a part of me that’s 25 years old and I can remember that. We’re all compendiums of lots of different ages and cognitive abilities, cognitive awarenesses. In the film, I felt that just even showing Edwin within this multiplicity of selves and this cubic timeframe was truer to real life. Life is not simple; life is not linear; being human is complex and unpredictable. Editorially, I think that’s part of what I wanted to do, the quality I wanted the film to have.

Finally, is there anything else you feel you learned during the filmmaking process, about Edwin, about memory or about life in general?

I say to Edwin early in the film that I think a film about him will teach a lot of people what memory means. And what I hope it shows is that memory is the glue of life – it’s what holds us together, it’s what holds our multiplicity of selves together, it’s what holds our sanity together, it’s what gives us our identity. I think that becomes very clear as you see Edwin losing his past and, instead of the glue, you get dementia, the loss of memory, and he becomes unstuck and cut off from his past. He himself says, ‘I know there’s a past and I know that I lived in it, and that I gave it up to live only in the present.’ So, I’m just trying to, as Edwin would say, get to the heart of the matter, get to a deep place, through a portrait of a very interesting human being, a poet, a friend, a family member, a fellow artist, a mentor and someone who I love very much.

Written by Rob Dickie

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