The Screening Room: The Aftermath of Stroke

 

Building bridges: two films about self-discovery after stroke

Dr Khalid Ali

 

Two recent films portray the aftermaths of stroke from different viewpoints: that of a stroke survivor in My Beautiful Broken Brain (UK 2016, directed Lotje Sodderland and Sophie Anderson, currently showing on Netflix) and that of the daughter of a stroke survivor in You See Me (USA 2015, directed by Linda Brown, available from http://youseememovie.com/).

Linda Brown is a film maker and an Associate Professor at the University of Southern California (USC). After her father Stanley Brown had a stroke in 2004 at the age of 79, she decided to collate her filmed reflections on his stroke experience in a documentary film, You See Me. Another motivation for making the film was her strong desire to get to know her father better as a human being with a traumatic past and unfulfilled dreams. Using family home videos and interviews with her father, mother, and two sisters, she tells a poignant story of a family afflicted by stroke as well as long-hidden secrets. The blood clot that blocked the blood supply to her father’s brain (cerebellum) has affected him in many ways; his physical weaknesses, poor balance, stuttering speech were accompanied by significant behavioral changes characterized by frustration and outbursts of anger. In spite of Stanley’s determination to walk and communicate and restore his relationship with his family, his frequent paranoid delusions and verbal abuse put significant strain and pressure on everybody around him, particularly his long suffering wife. Documenting the turbulent and volatile family life for 12 years after Stanley’s stroke in film became a journey of self-discovery for Linda and her mother. Watching family home movies enabled them both to re-evaluate their relationship with Stanley, and to come to terms with their own uncertainties about his morbid and enigmatic pre-stroke personality. With poignant realism, Stanley’s death circumstances were honestly shared with the audience. However, ‘unexpected salvation and healing’ come in the guise of a never-before-seen family home video.

Following the film screening in several international film festivals, and after winning major awards, The American Heart and Stroke Association (AHSA) supported the film in public campaigns for its honest portrayal of life after stroke, in addition to caregiver burden in old age, domestic violence, and mental health awareness.

In My Beautiful Broken Brain, we see Lotje Sodderland, another film-maker, who had a massive haemorrhagic stroke at the age of 34. Following life-saving brain surgery, she begins to experience a bewildering and confusing reality; visual images are distorted, sounds are exaggerated – a surreal existence that reminds her of ‘the red room’ experience in Twin peaks, her beloved director David Lynch’s infamous TV series from 1990 (https://en.wikipedia.org/wiki/Twin_Peaks). With the help of another film maker, Sophie Anderson, the two embark on a journey of filming Lotje’s demanding speech therapy sessions, her isolating experience in a hospital rehabilitation unit, readjusting to life again, and joining a research study that involving trans-cranial magnetic stimulation for improving speech.

In her strong desire to turn her ordeal into a positive experience, Lotje and Sophie send a videotaped message to David Lynch (https://en.wikipedia.org/wiki/David_Lynch), sharing Lotje’s day-to-day attempts of ‘restoring her old self’. To their surprise, David Lynch replies, expressing his interest in Lotje’s video diaries, and ultimately joining as an executive producer for the film.

Telling her stroke experience as it is without sugar-coating, Lotje says: ‘My life was hijacked by therapists. I am now defined by my impairments’.  How much she scores on stroke-specific assessment scales becomes her daily pre-occupation. Lotje’s story and observations embody the sense of lack of control that many stroke patients experience both in hospital and after discharge. Stroke therapists as ‘dictators’ controlling the stroke survivors’ recovery, and the challenge for survivors moving towards a ‘reluctant democracy’ has been explored in a seminal article by Norris and Kilbride (1).

In spite of the harsh reality of life post-stroke, Lotje slowly discovers and comes to appreciate her hidden strength and her resilience as she reconnects with a new sense of self. The ethos of self-management post stroke is practiced on a daily basis by Lotje, a reminder of the visionary Bridges approach championed by Professor Fiona Jones in the UK (2).

You See Me and My Beautiful Broken Brain show us how living with, and embracing change after stroke can be the key for healing and liberation for both stroke survivors and their families.

 

References

  1. Norris M, Kilbride C. From dictatorship to a reluctant democracy: stroke therapists talking about self-management. Disabil Rehabil 2014; 36 (1): 32-8.
  2. Self-management – Bridges approach  http://www.bridgesselfmanagement.org.uk/

 

Address for correspondence: Dr Khalid Ali, Screening room editor, Khalid.ali@bsuh.nhs.uk