This Ends With Me
There are some inheritances you don’t speak about in polite company. A large chunk of land? Someone’s prized pickle recipe? Do you talk about eye color? Or maybe the way your laugh sounds a little too much like your father’s.
And then there are the ones that feel like they were carved into your bones with something sharp and ancient. The kind that don’t just follow you… they wait in deadly silence. My family carries one of those. It’s called familial ALS (or genetic). C9orf72. 90% of ALS cases are sporadic. 10% are not. We are among the ultra un-lucky. We have buried three people because of it. My mother is fighting it, as well her older sister (my aunt). And I carry the gene myself, a quiet line of code that may or may not one day wake up and change everything. My neurologist at Vanderbilt told me I have a 50% chance of developing ALS in the next 20 years, and it jumps to 99.5 after that prior to age 80. Yes, that number rises so fast as I age. Those are the facts. There is no way to dress that up nicely.
But here is what those numbers don’t account for; the way I will fight, the way I will advocate, the way I will build something bigger than fear. I refuse to live my life as a countdown. I will live it as a call to action.
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.
It has haunted my bloodline. And for a long time, that word haunted felt like the only one that fit. Like we were living inside a story already written, just waiting to see whose name would be called next.
But here is the truth I am choosing now; I am not just part of this story. I am rewriting it. I am a caregiver. I am a daughter. I am a Wife. And I am a mother. And I am the founder of Rise for ALS Chattanooga Inc, because I refuse to sit quietly while this disease decides our fate.
I am speaking for the family members we have lost. For the versions of them that should still be here laughing at dinner tables and showing up to every birthday party and backyard cookout. I am speaking for my mother and my aunt, who wake up every single day and fight a battle most people cannot even comprehend. I am speaking for myself… for the future I don’t fully understand yet, but refuse to meet unarmed. And I am speaking for my children. Because nothing, nothing, lights a fire in your chest like the possibility that your kids could inherit something you would burn the world down to protect them from.
So I will use my voice. Loudly, relentlessly, and unapologetically. I will build community and do what I can to show Chattanooga and North GA that ALS is HERE. I will raise funds to the best of my ability. I will tell stories that make people stop scrolling and feel something. I will stand beside every family walking this road and say - you are not alone in this.
ALS may be part of my bloodline. But it is not the author of it.
And if this disease thinks it gets to haunt us without resistance…it picked the wrong family.
