This Ends With Me

ALS is a monster. Not a metaphorical one. Or something poetic and distant. I like to call it an Eldritch thing. If you’re familiar with H.P. Lovecraft’s mythos, ALS is very much incomprehensible and full of cosmic indifference. It is something that shouldn't be possible. ALS is a disease where the horror of a healthy mind must witness its own physical "machinery" being dismantled by its own biology for no rhyme or reason. In most Eldritch stories, characters often lose their sanity or their physical form as they come into contact with the entity. They become "trapped" in a reality they can no longer control. ALS starts as a twitch or a stumble, as something small and "wrong", before revealing its true, massive scale. We expect our bodies to obey us. When the nerves (the motor neurons, not the sensory ones) stop communicating, it feels like a betrayal of the laws of physics and biology. Much like those who "see" the monster in horror stories, patients and families often feel they are in a different reality than the rest of the world, watching a slow-motion catastrophe that others can’t fully grasp. And it takes, and takes, and takes.