Tag: grief

The Family Curse: Growing Up in the Shadow of ALS

Where I'm At

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! 😉

“Holding Hope” – Image created with Gemini

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.

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 :

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

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. 💚🤘🏻

I’ll Never Fucking Know

zen
Image created with Gemini

Sometimes grief doesn’t come from death — it comes from silence. From a friendship that once burned bright and then vanished without explanation. This poem spilled out of me in still trying to process the loss of someone who once felt like home. It’s messy, raw, and probably imperfect… but so was our bond.

“I’ll Never Fucking Know”

What the fuck happened?

Seems I’ll never understand.

Like a whirlwind of emotions;

your sleight of hand.

Mutual love, compassion,

freedom of our fucking souls.

Someone to lean on in a storm—

bestie goals.

Is it really worth it,

to be so mad?

Is it really worth it,

to throw away what we had?

Your silence is deafening;

none of this makes sense.

We could’ve figured it out

with a bond that intense.

What could be, would be, should be,

before it’s too late.

This animosity wasn’t written

to be our fate.

But nothing’s changed;

what more can I do?

Just keep on keepin’ on,

without you.

I’ll stitch up my heart,

just like before.

Burn bright in your darkness—

I’ll always love you more.

What the fuck happened?

Where’s your vibrant fucking glow?

Your stubbornness knows no bounds.

Guess I’ll never fucking know.

Losing someone you love — whether a friend, a partner, or a soulmate of any kind — can feel like a death without a funeral. Writing this helped me grieve, rage, and remember.

Fuck it — grief is messy, love is messy, friendship is messy. But maybe we don’t have to process it alone. Drop a thought, a rant, or a poem of your own in the comments. Let’s build a little corner of honesty together.

Rock on!

PS — What sparked this?

For a few years, my family was caught in chaos, and I was the one holding it all together. That kind of weight leaves you drained in ways you don’t even notice until later.

I think that’s why memories of this friend hit me so hard when they resurfaced – We once leaned on each other & lit each other up when we had nothing left.

I tried reaching out — not out of selfishness, but out of hope. Hope that maybe we could move forward, even just as friends. But silence was my answer.

So I’m left with this strange space: not fully grieving, not fully heartbroken, just carrying a fire I once borrowed from him. A fire I’ll keep tending, in the life I’ve built.

Grief, Love, and Loud Music: Why I’m Chasing a Ghost at a Rock Show

Where I'm At
Image generated with ChatGPT

I feel the need to revisit a topic I wrote about a couple months ago, because I’ve since had a lot of thoughts floating around my head.

I wrote then about my friend who felt that he was in love with me; and as much as I absolutely loved the shit out of him, I never wanted more than a friendship.

We haven’t seen or talked to each other in over a decade.

But he’s been on my mind quite a bit lately. To the point where I’m going alone to a concert he’ll probably be at (if he even still lives around here) – not just to see if I can pull anything from the ashes, but also so I can get the fuck away from screaming children & feel like a human for a few hours LOL. (I’m literally trying to write this right now with screaming children running around because I haven’t had time to work on anything. I can practically feel the smoke coming out of my ears.)

The Past

Over the last couple months, a ton of old memories have been flooding back. And there was a lot of love there. Like, a LOT. I never even realized a lot of the things I do now because I was so young (in my 20’s), and always so scared of losing him.

I always worried so much about him cuz he was always dealing with so much stress, and I wanted to be there for him as much as I possibly could. I still do.

He had such an adorable smile, and he gave great hugs. I loved talking to him because he was so different from me, yet still so similar. He was encouraging, flattering, and really really sweet. Not to mention resilient as fuck, and I admired the hell out of that. He’s always been one of my absolute favorite people I’ve ever known.

He was also pretty brutal at times. (Though, isn’t everyone?) I loved him too much for that to scare me off…until he blatantly told me to fuck off. So…that sucked.

The Present

I’ve moved on with my life. I hardly thought about him for a long time – Just fleeting thoughts, wondering how he’s doing, wishing he were around to share bits of my life with. Overall, I was too busy living.

I don’t know what sparked him back in my mind. I really don’t.

I’ve noticed that grief works in cycles, at least for me. Part of me thinks this might just be my brain still grieving the relationship we had. Especially since I never fully understood why we don’t still have that.

Little random things keep happening too, that remind me of him. Which makes me wonder if the universe is trying to tell me something. Which might be silly. But it also might not.

The Future

So, I’m going to see Reverend Horton Heat. He introduced me to them a million years ago, and they’ve since become my favorite driving tunes.

I won’t get my hopes up about him being there. But they kinda are, I’m not gonna lie. lol

I won’t get my hopes up about him being happy to see me. But I don’t really care (not gonna lie). If he’s not, I’ll still enjoy the show. And a couple beers. And no screaming children.

I just don’t want to waste any more time. I hate wasting time, cuz tomorrow is never promised and the “ALS gene time bomb” ticks louder in my ear every year.

If there’s ever anything I can do about anything, I always want to do it now.

And it’s so hard to connect with people these days, especially since COVID – I’d rather hold onto those I know I love, while I can.

Life’s too damn short to wonder what if forever.

If you’ve got someone on your mind lately — a friend, a flame, or even a ghost — maybe this is your nudge to reach out.

✨ Drop a comment if you’ve ever chased closure, connection, or just needed a night to feel alive again. I’m listening.

And hey, wish me luck. Either way. 🍻

Real Talk: How to Function When Life Super Sucks

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Image created with ChatGPT

Let’s Get Real : When Happiness Feels Like a Scam

It seems like everyone’s always chasing happiness, as though it’s the ultimate goal of life. Romanticizing happiness like that, however, can really just set us up for failure, especially when we feel like we’re just struggling to survive.

Here’s a little truth bomb for thought, from Mark Manson – “Comfort with your core misery is a form of happiness.” I suppose accepting, understanding, and approaching with compassion your underlying (angst, sadness, or whatever) is the key to freedom from its control.

Even Stoic philosopher king Marcus Aurelius was dealt a super shitty hand throughout his life, yet he showed up for it. Every. Damn. Day.

How to Deal When It All Feels Pointless

“We continue to rise because it’s the only way forward.” – Ryan Holiday

  1. Start with the basics (especially if you’re at rock bottom) :
  • Eat something that didn’t come out of a crinkly wrapper. Your mind, just like your body, needs actual nutrients to feel good.
  • Move your ass, even if it’s just a casual stroll.
  • Sleep, hydrate, repeat.

2. Don’t numb out. You’ll only cause yourself more problems.

  • No drugs. No binges. No “maybe if I just…” decisions.
  • That one night stand? Definitely not the solution!
  • Therapy & medication are tools, not weaknesses. If your brain is sick, help it heal – no one worth a shit is judging you.

What to Do Instead of Spiraling

  • Journal. And get ugly about it. Be honest, even if it’s petty & especially if it’s dark. Then flip the script – What would you say to someone you love if they were feeling the way you do?
  • Lean on your people, even if it feels awkward or vulnerable. Any decent human will want to lift another up.
  • Do one tiny thing to look forward to. A creative project, a cheap vacation, plan a local hike, or learn something weird on YouTube.
  • Volunteer. Sometimes, giving a shit about someone else helps us give a shit about ourselves again.
  • Develop healthy routines to help you get through each day.

When You Feel Like Nobody Cares

Quick sad story – My mom died at home of complications from ALS four days after my 15th birthday. (Worst. Birthday. Ever.) I remember sitting on the couch in front of her while my aunt called the coroner & distant family members in the other room, and my father did shots & smoked cigarettes with my uncle outside. I asked myself, “now what do I do? How do I grieve? How do I move forward from this?” And then I realized I was left alone with the empty shell of my mom. And I screamed in agony, feeling like I didn’t matter.

This just magnified my tendency to shut down and disappear when I’m in pain. As an adult, I try hard to consciously choose not to revert to that – I try to make sure I reach out to others just to say “hi, how are ya?!?” (even though I feel like no one does that in turn).

A little reminder (for myself, & you)…

If you ever feel like no one gives a fuck – you’re not alone, or broken, or anything like that. That pain has a root. But isolation isn’t really going to make anything better. Reach out anyway – you’ll never know if some light will reach back otherwise.

Selective Apathy : A Survival Skill in a Loud World

“Let the chaos settle, & clarity will follow”

From there, we need to focus on caring deeply about things that matter to us, & not at all about things that drain us. Mindfulness is a matter of noticing where your energy goes unattended, & rerouting it with intention.

According to the Dalai Lama (& a million philosophers before him), the only constant in life is change. Suffering occurs as a natural response when we are resistant to change. When we are capable, we need to let go – accept it, so we can address it & turn it around by finding any possible meanings & lessons hidden beneath the pain.

You Don’t Have to Be Happy to Live Well

You’re not broken because you’re not blissed out. You’re still here. Still trying. And that definitely matters. You are not alone, and the world is better with you in it. Feel & live loud, even if it gets a bit ugly at times. The golden rule in life, in my opinion, is to do whatever you want so long as you don’t hurt anyone, including yourself.

If you’re in the thick of it right now — I see you. Keep doing the next right thing, even if it’s tiny. Leave a comment, message me, or just save this for later. You’re not alone in the mess.

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Rock on!