EoE, 2023

Accordion Book in Manila Envelop on Hahnemuhle Paper

This book, entitled, EoE, unveils a stark span of time of my autistic brother’s recent life with this condition known as Eosinophilic Esophagitis. It is marked by his experiences caused by his severe allergies, vomiting, and restricted activities. EoE, as a recently discovered condition, is scrutinized and disputed by some medical professionals, even with positive results from endoscopies. It is characterized by inflammation of the esophagus which can be brought on by frequent and distressing episodes of vomiting, typically occurring multiple times daily.

Michael's journey is further complicated by his inability to express himself as he has severe, non-verbal autism. This ledger narrative began in the form of a “vomiting log” for his gastroenterologist, and then eventually for his entire care team. He and his representatives were defenseless at advocating for his EoE diagnosis and so the condition ensued.

As his sister, this book is more than a medical record — it is a visual and visceral representation of my brother’s daily struggle over the past two and a half years. This aching span of time, patience, and powerlessness has been haunting — witnessing my brother’s life suspended like a Schrödinger’s cat.

Encased in a medical Manila envelope, the data carefully chronicles each episode of his vomiting, correlated with the foods consumed, offering insights into potential triggers. The sheets spill out of the folder as a visual metaphor and as a form of cry for help. This project documents the human condition, suspending the unspoken challenges faced by my brother who is helplessly bombarded by varied perceptions of his autism, allergies, and EoE.