In October of last year my mother-in-law, Rachel, died of ALS. Death by amyotrophic lateral sclerosis is horrifying. A person’s muscles decay to nothing, leaving her mentally alert and thus acutely aware of her steady march to respiratory failure. Of course, calling it a march is mordantly ironic. The ALS patient is, early on, reduced to a wheelchair and dependent on caretakers to perform a host of tasks that, for most of us, constitute the threshold of dignity. Help with eating, defecating, breathing.
In January, I began to experience failures in my own body that mirrored Rachel’s early symptoms. Numbness in my feet and hands; spasms in my calves and forearms; weakness in my lower back. Naturally, I was consumed with anxiety and, on my worst days, became irrationally convinced that I too was dying. I can’t express how isolating this thought is. You perform all your regular activities—eat, work, play—through a haze of sorrow. I came to think that one of the real tragedies of an end like Rachel’s, one drawn out slowly over three years, is the way in which death’s expectation destroys your ability to be present in the few things still left to you. Death seats itself at the dinner table long before it requires a nurse to hold your fork. As the real pain of ALS slowly dawned, waves of regret began to wash over me; during those three years Rachel was alone in a way that none of us really understood. Sometimes, perhaps even usually, we cannot know the pain of others unless we literally share in it.
Of course, ALS isn’t the only path to death. Every path leads there. Ought this, if we really focus our imagination, induce the kind of dread I spoke of earlier? I might say yes if not for an even deeper suspicion that this wasn’t in fact the dominant experience of my mother-in-law. I remember her saying, a year into the disease, that she felt no anger or bitterness. She said something that, in the moment, I couldn’t really appreciate: that she didn’t see her life as unfairly cut short, as much as a gift—"To think that I have had these 59 years!” This perspective is, I venture, one of the possible discoveries provided by real suffering. As counterintuitive as it is true, the experience of loss can lead to the recognition of blessing. The latter is the real experience I hope to share with Rachel. Maybe death needn’t destroy before it kills.