About eight or so years back, my dad started forgetting things. It was harmless at first, like losing an item he thought he’d put somewhere, but then it became more worrying. He’d get lost on his way home from work — a route he’d taken countless times before — and would have lapses where he could no longer recall names or where he was and what he was doing. As a doctor, he knew something wasn’t right, but other medical professionals failed to diagnose it as anything other than typical cognitive decline. He was in his 70s after all.
But as COVID hit and time moved on, it only got worse. His whole body started exhibiting signs of deterioration, ranging from hand tremors to his gait becoming lumbered. Finally, around two years ago, a name could be put to this cruelty: Parkinson’s with Lewy Body dementia. If this sounds familiar to some, it’s because it’s the same disease that led Robin Williams to take his own life a little over a decade ago.
My father lives in a memory care facility now, unable to communicate normally or perform most functions himself, as well as regularly hallucinating, but every time I see him it’s hard not to remember the brilliant man who raised me. Not only was he gifted in the medical sciences, but he was also an avid historian, an opera lover, and valued civics and good governance more than most in his generation. Try to talk to him about any of these subjects today, however, and one is reminded of all that has already been lost despite him still being here and of this earth.
While my father’s story may be very different from that of Martin Pistorius’ depicted in Rodney Ascher‘s latest documentary, “Ghost Boy,” I nonetheless felt a connection to its portrayal of trauma’s ripple effect and how a great mind trapped in a dysfunctional body is one of this world’s most ruthless injustices. A victim of what is now known as locked-in syndrome, Pistorius’ life at one point had great potential. At only 10 or 11, Pistorius was already working with wiring and electrodes to build his own alarm he could use to keep his siblings from messing with his legos. But at 12, his entire body began inextricably shutting down, leaving him in a waking coma that ripped any memories from before this time. As we come to find out, the only reason Pistorius is able to recount any of this information in the present day is both through the use of a computer-based speech synthesizer and from details that were relayed to him years later when he finally regained consciousness and the ability to communicate with others.
To portray the nuances of Pistorius’ experience, Ascher’s re-enactments evoke Rainer Werner Fassbinder’s landmark sci-fi miniseries “World on a Wire,” itself a pre-cursor for the Wachowskis’ “The Matrix,” which the documentarian covered in his last feature, “A Glitch in the Matrix.” Just as the subject of Fassbinder’s piece struggles to decipher whether he exists in real life or a simulation, so too are we meant to understand the plight of Pistorius, who by 16, had started to regain consciousness, but was unable to share that information in any meaningful way. By 19, Pistorius had become fully aware of his surroundings and began picking up on conversations others thought they were having with themselves or around individuals that were lacking in comprehensive abilities.
For years, Pistorius was stuck in this in-between, his mind sharp and aware, but his body without the tools to let others know. There were times he made attempts, like biting his father’s stomach as he tried to pop a pimple on his back, but in reliving this experience, Pistorius shares that even those charged with his care didn’t always put much stock in him being a human being. One particularly distressing anecdote involves Pistorius being forced to eat his own vomit while staying at an overnight care center. But perhaps the most troubling disconnection Pistorius is forced to face is his relationship with his own mother. While his father worked hard to tend to his needs, over time, Pistorius’ mother retreated from the battle he was facing and instead put her attention on his other two healthy siblings. Though she didn’t know he was actually able to understand her, his mother even went as far as telling him that he had to die and free the rest of the family from this haunting stasis.
As troubling as this might be for many, for this writer, it was an all-too-familiar scenario. How does one cope with the emotions one carries for the individual trapped inside of the disease? Is it wrong to give up hope for some reversal and wish they might be freed from this tragic existence once and for all? Though most of the narrative is shared directly from Pistorius as Ascher interviews him via an Errol Morris-style Interrotron set-up, the filmmaker does offer space to Pistorius’ parents as well, so that their perspective may be a bit more rounded out and not purely relayed by someone else. However, their reaction to realizing their son’s mind was still sharp at times they thought he’d gone is woefully left out of the narrative, perhaps too haunting and troublesome for them to face fully.
In the end, for as much contempt as Pistorius held for the care he was being given, the one to actually awaken his parents to the possibility of his consciousness was in fact one of his caretakers, Virna van der Walt. Unlike others, Virna spoke to Pistorius as a friend and as such, Pistorius was able to respond in kind, using his eyes to acknowledge that he was listening. Eventually, Virna caught on and had his parents get him tested for Augmentative and Alternative Communication at the University of Pretoria in South Africa. As exhibited by Pistorious’s presence throughout the film via talking head interviews, the rest of the story is pretty self-explanatory, though unquestionably remarkable. Over the next few years, Pistorius developed a new process of communication and regained some of his upper-body functions, now making it possible for him to move around by wheelchair without the assistance of others.
Outside of his ability to walk and speak, Pistorius in fact was able to achieve what many may define as a normal life, even getting married and having a son, as well as forming his own business focused on web design and development. Though Ascher treats this as a happy ending, his real intent throughout the film seems to be focused on putting us through the traumatic saga Pistorius underwent throughout much of his formative years. It wouldn’t be the first time the filmmaker has found fascination with the horrors the mind and body can inflict, having previously made “Room 237,” which dives into the multiple interpretations of Stanley Kubrick’s “The Shining,” as well as “The Nightmare,” which examines those affected by sleep paralysis. But with “Ghost Boy,” Ascher combines all he’s learned in making these past documentaries to craft an inventive recreation that calls on theatrical practicality, as well as cinematic juxtaposition. Using disabled performer Jett Harris in place of Pistorius, the subtleties of his unique journey are brought to stunning, yet authentic realization.
Knowing first-hand the devastation a disease like Pistorius’ can reap, not just on the individual, but to those around him, I felt particularly drawn to “Ghost Boy,” both as a stylistic exercise and as an unvarnished first-person account of disability. Like last year’s “The Remarkable Life of Ibelin,” winner of the Audience Award: World Cinema Documentary and the Directing Award: World Cinema Documentary at Sundance, “Ghost Boy” creates a link between the technological savvy of its main subject and how his life’s trial is illustrated throughout the film. It’s not always an easy watch, but one that constantly intrigues and is invested in accounting for all we may not fully understand about those who are unable to communicate by traditional means.
Grade: B+
“Ghost Boy” premiered at the 2025 SXSW Film Festival. It is currently seeking U.S. distribution.
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