Emma Matthews and Christopher Petit’s Original Epilepsy Documentary

There is a specific kind of exhaustion that comes with navigating a medical bureaucracy, a feeling of being adrift in a sea of paperwork and sterile waiting rooms. For those of us living in Chicago, that feeling often manifests during the long treks through the Loop or the daunting corridors of the city’s massive medical campuses. We are used to the scale of this city, but when a health crisis hits, the scale of the healthcare system can sense less like a resource and more like a wall. This intersection of personal trauma and systemic failure is the beating heart of D is for Distance, a profoundly original documentary by filmmakers Christopher Petit and Emma Matthews that serves as both a family archive and a searing critique of the structures that govern our health.

The film centers on Louis Petit, the son of the directors, who suffered from a rare and frighteningly debilitating form of complex epilepsy. This wasn’t just a medical condition. it was a thief that stole years of Louis’ young life and effectively erased his memories of childhood. The filmmakers don’t treat this as a standard patient narrative. Instead, they construct an “essay-collage,” blending home videos, medical encounters and Louis’ own visionary art—visual representations of his condition—to map the distance between the internal reality of a neurological storm and the external world’s attempt to categorize it.

What makes D is for Distance resonate beyond its specific subject matter is its willingness to zoom out. The struggle against Britain’s ailing national healthcare system—characterized by unbending bureaucracy and inhumane regulations—is mirrored by a larger cultural inquiry. The film pivots unexpectedly into a discarded project involving the American writer William S. Burroughs and former CIA chief James Angleton. By linking these two figures, both known for their obsessions and paranoia, the film explores the “inner reality” of the mind, Cold War anxieties, and the history of mind-control experiments. It suggests that the struggle to understand a malfunctioning brain is not far removed from the state’s historical attempt to manipulate one.

For the viewer, this creates a psychogeographical experience. We move from the microcosm of a family’s pain to the macrocosm of social decline. The film’s structure, which echoes the road movie genre—a nod to Christopher Petit’s 1979 film Radio On—emphasizes the feeling of transit. The family’s search for solutions leads them far beyond their borders, even to Rotterdam, highlighting the desperate lengths parents will go to when the “official” channels of care fail them. It is a reminder that for many, healthcare is not a guaranteed right but a journey of navigation and survival.

In a city like Chicago, where we have access to some of the world’s leading medical institutions, it is easy to assume that the “distance” between a diagnosis and effective treatment is short. However, anyone who has dealt with the complexities of insurance authorizations or the rigid protocols of large-scale hospital systems knows that the bureaucracy can be just as debilitating as the illness itself. Whether you are navigating the halls of patient advocacy services or fighting for a specific treatment plan, the friction between human need and systemic rigidity is a universal struggle.

The film’s focus on Louis’ art is perhaps its most hopeful element. By documenting his “visionary” condition through art, the filmmakers transform a medical tragedy into a form of expression. It suggests that while memory may be erased and the mind fragmented, there are other ways to communicate the experience of existence. This blend of clinical documentation and artistic exploration challenges the traditional “patient” identity, reclaiming agency from the doctors and bureaucrats who seek to define the sufferer.

As we contemplate the themes of D is for Distance, it becomes clear that the “distance” mentioned in the title refers to more than just physical miles or the gap in memory. It is the distance between how we are seen by the system and who we actually are. In the context of the American healthcare experience, this gap is often filled with frustration and fear. To bridge that gap, one must often become their own advocate, their own researcher, and sometimes, their own filmmaker, documenting the journey just to prove that the struggle is real.

Navigating Neurological Care in the Chicago Area

Given my background in analyzing systemic failures and community resources, I know that when a family is faced with a complex neurological diagnosis—especially one as disruptive as complex epilepsy—the sheer volume of choices in a major metro area can be overwhelming. If you are currently navigating these challenges within the Chicago healthcare ecosystem, from the clinics at Northwestern Memorial Hospital to the specialized units at University of Chicago Medicine, you cannot rely on the bureaucracy alone. You need a curated team of specialists who understand both the clinical and the human side of the condition.

If this trend of systemic friction impacts your family here in the Windy City, here are the three types of local professionals you should prioritize in your search:

Board-Certified Epileptologists

Do not settle for a general neurologist. You need a specialist specifically trained in epilepsy. When searching locally, look for providers affiliated with “Level 4 Epilepsy Centers.” These institutions are the only ones equipped to handle the most complex cases, providing comprehensive surgical evaluations and advanced monitoring that smaller clinics cannot offer. Ensure they have a track record of treating “refractory” or rare forms of epilepsy.

Professional Patient Advocates

As seen in the struggle of the Petit family, the bureaucracy is often the primary antagonist. A professional patient advocate—specifically one with experience in the Illinois Department of Public Health regulations and private insurance appeals—is essential. Look for advocates who specialize in “medical navigation,” who can help you challenge denied claims and coordinate communication between disparate specialists to ensure no one is operating in a vacuum.

Neuro-Centric Art and Cognitive Therapists

Following the example of Louis Petit’s visionary art, seek out therapists who specialize in neurological rehabilitation through creative expression. Look for practitioners who combine traditional cognitive behavioral therapy with art therapy, specifically those trained in dealing with memory loss or traumatic brain injuries. The goal here is not “cure” in the clinical sense, but the reclamation of identity and the creation of a non-verbal language for internal experiences.

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