As an English Professor for many years, I led dozens of discussions about Stephen Crane’s view of fate in the story, “The Open Boat.” The narrator in the story says, “When it occurs to a man that nature does not regard him as important . . . . he at first wishes to throw bricks at the temple, and he hates deeply the fact that there are no bricks and no temples . . . . Then, if there be no tangible thing to hoot he feels, perhaps, the desire to confront a personification and indulge in pleas, bowed on one knee, and with hands supplicant saying: ‘Yes, but I love myself.’ A high cold star on a winter’s night is the word he feels that She [Fate] says to him. Thereafter he knows the pathos of his situation.”
I don’t know if young college students ever fully felt the gravity of Crane’s words. The older I got and the more I read, I saw that most serious art and literature addresses this idea—surely, in this vast, infinite universe, we are more than a collection of atoms, more than the random result of an evolutionary process, more than a blip in the span of time. We desperately want to believe that each of us is an individual, a distinct self, a soul, a spirit, for whom a deity cares, for whom there is some higher purpose. Losing our self is our deepest fear, especially in western cultures. Every living thing will die, and that is a fact we know, but it remains the great mystery of human existence. We create religious and spiritual systems and beliefs to assure us that our self, our consciousness, is eternal. Death is our inevitable end, but we do everything we can to extend life and deny that death is the end of our conscious existence.
As a person with ALS, I want to throw bricks and scream, I want to “rage against the dying of the light,” but now that ALS has stolen my voice, I can’t “hoot” or scream—I am as silent as a “high cold star on a winter’s night,” and I will inevitably lose my ability to throw bricks and bow on one knee.
ALS has been a named disease for more than 150 years, yet we still have no cause, treatment, or cure. Accepting the pathos of our situation is the hardest part of our ALS journey.