The Family Curse: Growing Up in the Shadow of ALS

Yeah, so…I’m still fucking sick. Recovering, but much slower than I’d like. Lame. Please bear with my foggy brained rambling 😆💚

I decided to scrap my last “love” post for February. Cuz, well…I’m just not interested in it anymore!

This month (ironically), I’m planning a few “health” related posts.

Not at all like “how to be healthy” posts.

More like…this is some shit I’m dealing with, or have dealt with in the past, posts.

It’s been in my neverending collection of stuff I wanna post about eventually, so…here we go! 😉

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Some families pass down heirlooms.

Some pass down traditions.

Mine passed down ALS.

And if the pattern in my family holds, there’s a chance the story isn’t finished with me.

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The Family Curse

A few months back, I wrote a little bit about my teenage experience as a caregiver for my mother after her ALS diagnosis, & the personal fallout after she’d passed away (ALS, Grief, and Growing Up Too Fast: What October Means to Me).

For those who don’t know, ALS runs heavily in my mother’s family. To the point where our genes are sought for study. It’s pretty scary.

Let me map out some of what little I actually know :

• It comes from my mom’s dad’s family, traceable back as far as the late 1800’s when it was referred to as “creeping paralysis”.
• My mom was the oldest of four girls, the middle two were twins : The youngest doesn’t carry the gene; the other three passed away, all from ALS, at around the ages of 35, 45, & 55.
• The three sisters had a total of six kids between them, myself included. Out of those six, three have already passed away from ALS, most recently about two years ago now. I haven’t been tested for the gene, but my remaining cousins were & they do carry it.
• Here’s two of many stories about about a couple of my cousins :
  • Dying Mom Leaves Legacy of Wisdom
  • New York Bill Named for Beloved Coach Seeks to End Genetic Insurance Discrimination

Existential Crisis

My odds probably aren’t great. But as long as I don’t get tested, there’s still a strange kind of hope in the uncertainty.

However, one of those remaining cousins was recently diagnosed with ALS. She’s only a couple years older than me, so…cue the amplified existential crisis.

I’m tired of being so rudely reminded of my mortality, as I’m sure were all of my ancestors before me.

I’m tired of all this grief, and fear.

That possible genetic time bomb has been ticking a little too loudly in my ear lately…

And I resent the fact that my family isn’t as close as it should be. It’s always been kind of sickening to me, because we all know that’s not the way it should be.

Shitty Instincts

For some reason, hearing this news makes me want to reach out to my old friend even more. (If you’ve been around a while, you’ve heard me mention him. And you may have heard me mention that I’ve tried reaching out to him, to no avail.)

Why.

Because I don’t wanna go out without resolution. Such unresolved tension. Especially since there’s no good reason for it in the first place.

And because I want his support; because sometimes he could be the most enlightening perspective in my life.

He was around when I first started learning more about the tragedy surrounding this gene, and he said to me one day, “seems you already count yourself among the dead”. Which wasn’t any more true then than it is now…

No One Makes It Out Alive

I don’t consider myself among the dead.

I consider myself among the cursed.

Cursed with immense loss & fear ingrained in my genetic code.

Cursed with being faced with the harshest of realities, such as the fact that no one’s there when all is done – ”In the end, you’re measured by how you treat the people closest to you“ – Ryan Holiday.

Cursed with shitty genes & a constant reminder of how short life can be.

But also immensely blessed with a sense of urgency that most people don’t realize until it’s too late. If they even get the chance.

All I can do is love my family, keep trying to live vibrantly, and keep trying to help others.

“Life is long, if you know how to use it” – Seneca

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Celebrate life. Honor your ancestors.

If ALS has touched your family too, you already know the strange mix of grief, fear, and urgency that comes with it.

If you’re able, consider supporting ALS research – or simply reach out to someone you love today. None of us are promised tomorrow.

Click here to learn more about ALS or to donate toward finding a cure 👉 ALS Association

Stay real. Stay loud. And rock the fuck on. 💚🤘🏻