When Breath Becomes Air

Any major illness transforms a patient’s—really, an entire family’s—life. But brain diseases have the additional strangeness of the esoteric.

The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it

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.

We saw every type of doctor you could imagine, lost count of how many treatments and therapies we tried, spent thousands of dollars, gave up all hope of her getting better, and started making plans for an early death. I was in my mid-thirties making plans to be a single father.