China ALS woman holds funeral home party, says disease cannot beat ‘optimism, love, hope’
ALS is described as ‘freezing disease’ because it creates sensation of being trapped or ‘frozen’ within an immobile body as illness advances
A Chinese woman who has lived for eight years with the rare neurological disease amyotrophic lateral sclerosis (ALS) recently held a farewell ceremony at a funeral home to celebrate love and life.
Liu Jie, 42, organised the gathering at a funeral parlour in southwestern China’s Chongqing municipality.
Before her diagnosis with ALS eight years ago, Liu was a tour guide. During her illness, she experienced multiple emotional breakdowns as she witnessed her condition progress.
Recalling her upbringing, Liu described herself as a sensitive child with low self-esteem, particularly after her parents divorced. However, she felt that her life improved significantly upon meeting her stepmother, who treated her like her own daughter. Liu eventually gained admission to a university, pursued a career as a tour guide, got married, and had a daughter.
Reflecting on her journey following the ALS diagnosis, Liu shared how she gradually lost muscle control in her fingers, legs, and mouth, ultimately rendering her unable to walk or speak. In her darkest moments, she even stopped eating. It was during this time that other ALS patients, volunteers, and social workers stepped in to provide her with support and care.
At her farewell party, Liu referred to these individuals as “angels” who “shed light in her life.”
Although Liu cannot walk or talk, she communicated with her guests using an eye-gaze device, which allowed her to type by focusing on letters on a screen, enabling the machine to vocalise her messages. This multifunctional device also empowers her to perform simple tasks, such as adjusting her bed and controlling the television, as shared in a video on her social media account, which has 63,000 followers.