The Body of Christ: Technology and Communities Maintaining Personhood in ALS
Philip Choi, MD, Assistant Professor of Internal Medicine, University of Michigan
How does one’s sense of personhood remain intact when the body so rapidly deteriorates? How is one’s own sense of creatureliness affected when every aspect of life, from breath, voice, movement, and nourishment is compromised? And how can medical technology working in tandem with meaningful Christian community redefine how patients can live with devastating illness? These are questions at the forefront of my mind as I care for patients with Amyotrophic Lateral Sclerosis (ALS)
ALS is a neurodegenerative disease that impacts every aspect of life for patients and their communities. Muscles rapidly weaken and atrophy, gradually leading to quadriplegia. Muscles of speech and swallowing become compromised, making eating and conversing difficult, if not impossible. Ultimately, the diaphragm weakens, leading to a constant feeling of breathlessness. These seemingly basic necessities for human existence are rapidly lost over the course of 2-5 years.
Modern day technological advances in medicine have been critiqued by many. In his book The Anticipatory Corpse, Jeffrey Bishop addresses an increasing problem in modern medicine where technology is used simply to keep matter in motion. He critiques the intensive care unit specifically, arguing that clinicians in the modern-day ICU have focused solely on formal and efficient causation, thereby neglecting the final cause of each individual patient.
ALS has limited pharmacologic treatments to alter the course of the disease. However, technology has vastly changed the ways that patients can live with the disease. Personalized motorized wheelchairs become the feet of patients, making patients increasingly mobile. Eye gaze technology with voice banking allows for personalized communication long after a patient loses her voice. When swallowing becomes challenging, feeding tubes inserted into the stomach allow for adequate nutrition to be delivered, so that time can be spent doing other meaningful activities. Home ventilators with mask or nasal interfaces allow patients to be free from breathlessness, while remaining mobile and not confined to the home. Some of these technologies were once confined to hospital and ICU settings. However, these technological advances used in the home setting are necessities to maintain personhood, and can be utilized to focus on the final cause of each individual patient living with ALS.
Despite all the ways that technology has improved the lives of patients, ALS remains an incredibly socially isolating disease. It is by no surprise that legislation around physician assisted death has revolved around cases of ALS. As mobility, voice, and breath deteriorate, both patient and caregiver experience a deep-rooted suffering, often due to the loss of not only the bodily self, but also due to the loss of relationships. Wendell Berry in his essay “Health is Membership”, highlights the interconnected of humans. Our relationality helps bring us into a greater state of health. In ALS, disease attempts to strip patients of any sense of interconnectedness. It is in these moments that the Body of Christ must take on new, revolutionary forms in order to care for patients with ALS and their caregivers.
ALS is a neurodegenerative disease that impacts every aspect of life for patients and their communities. Muscles rapidly weaken and atrophy, gradually leading to quadriplegia. Muscles of speech and swallowing become compromised, making eating and conversing difficult, if not impossible. Ultimately, the diaphragm weakens, leading to a constant feeling of breathlessness. These seemingly basic necessities for human existence are rapidly lost over the course of 2-5 years.
Modern day technological advances in medicine have been critiqued by many. In his book The Anticipatory Corpse, Jeffrey Bishop addresses an increasing problem in modern medicine where technology is used simply to keep matter in motion. He critiques the intensive care unit specifically, arguing that clinicians in the modern-day ICU have focused solely on formal and efficient causation, thereby neglecting the final cause of each individual patient.
ALS has limited pharmacologic treatments to alter the course of the disease. However, technology has vastly changed the ways that patients can live with the disease. Personalized motorized wheelchairs become the feet of patients, making patients increasingly mobile. Eye gaze technology with voice banking allows for personalized communication long after a patient loses her voice. When swallowing becomes challenging, feeding tubes inserted into the stomach allow for adequate nutrition to be delivered, so that time can be spent doing other meaningful activities. Home ventilators with mask or nasal interfaces allow patients to be free from breathlessness, while remaining mobile and not confined to the home. Some of these technologies were once confined to hospital and ICU settings. However, these technological advances used in the home setting are necessities to maintain personhood, and can be utilized to focus on the final cause of each individual patient living with ALS.
Despite all the ways that technology has improved the lives of patients, ALS remains an incredibly socially isolating disease. It is by no surprise that legislation around physician assisted death has revolved around cases of ALS. As mobility, voice, and breath deteriorate, both patient and caregiver experience a deep-rooted suffering, often due to the loss of not only the bodily self, but also due to the loss of relationships. Wendell Berry in his essay “Health is Membership”, highlights the interconnected of humans. Our relationality helps bring us into a greater state of health. In ALS, disease attempts to strip patients of any sense of interconnectedness. It is in these moments that the Body of Christ must take on new, revolutionary forms in order to care for patients with ALS and their caregivers.