Sublime

the physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.

J’ai aujourd’hui quarante ans : mon frère cadet est mort il y a huit ans, mon père dix, et ma mère trente-six. Il est temps, pendant que je puis encore voir et marcher, que je m’empare d’une partie de ma vie et que je la fasse mienne… Est-ce trop exiger ? Je suis fatigué de rendre service, de m’occuper des autres. Oui, Friedrich avait raison. Devra

Elle me disait chaque jour sa gratitude et sa joie de pouvoir demeurer chez elle jusqu’à la fin. La fin, elle la voyait sans doute à pouvoir la toucher, aussi en parlait-elle familièrement, avec une légèreté, un détachement qui, de sa part, étaient nouveaux. Toute sa vie si silencieuse et tellement discrète, ma mère n’hésitait plus désormais à me f

On those quiescent days, she was her normal self, the self she understood and had confidence in. On those days, she could almost convince herself that Dr. Davis and the genetic counselor had been wrong, or that the last six months had been a horrible dream, only a nightmare, the monster under her bed and clawing at her covers not real.

Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany—a piercing burst of light, illuminating What Really Matters—and more like someone had just firebombed the path forward. Now I would have to work around it.

To have the dignity of one’s reality: this, I realized, was why I worked so hard to find language to tell my story. I wanted to show how the emphasis on the psychological nature of chronic illness in a culture that pathologizes the failure to “overcome” robbed people of grace, while instructing them to suffer their illness with grace.