Wendy sits at the corner of a polished conference table. She’s timid by nature—a little mousy. Her voice squeaks out responses as she participates in the discussion.
The conference she’s attending is for a rare disease, Idiopathic Pulmonary Fibrosis—a monolithic condition boiled down to three seemingly benign letters: IPF.
Deep lung scarring and invisible battle wounds that rob vitality characterize this unforgiving disease.
Wendy has been able to adapt, a lesson learned early in life that is paying monstrous dividends as she cares for her husband. He’s the one living with IPF.
The disease came on strong a few years ago. He swore his cough was just seasonal allergies, and his lack of breath was just the slow creep of age. It wasn’t.
He swore his physician’s pneumonia diagnosis was correct. It wasn’t.
He swore he’d only be on oxygen for a little while. He wasn’t.
At the conference, Wendy shuffles off to the next room as patients and their caregivers split ways to participate in an exercise. Wendy goes with the caregivers, who, once settled, are asked to choose a number of singular words to describe their experience caring for someone living with IPF.
Wendy perks up a bit when the door finally closes. She raises her hand in a room of five caregivers and asks, “Are the patients going to see our selections?” The moderator reassures her, “No, this room is Vegas. What happens here stays here.”
Intrigued, Wendy hesitates before saying, “I have a word! Anger!”
It soon becomes obvious that Wendy has admitted to feelings everyone in the room had at one time felt. She is mad that her husband will spend his twilight years gasping for reprieve. She is mad that her husband’s broken body hides the fact that his personality has warped in the face of his struggle. She is mad that other people don’t know about this condition, that a terminal disease gets described as “just out of breath.” The more she speaks, the more caregivers around the room nod.
But, most of all, Wendy is mad that she’s mad.
The exercise ends too soon and everyone—caregivers and patients—shuffles back to their place at the polished conference table. Wendy takes a moment to squeeze her husband’s arm and lay her head on his shoulder. She smiles and closes her eyes.
