ALS, Grief, and Growing Up Too Fast: What October Means to Me

Technically, May is ALS Awareness Month — but for me, the awareness never ends. I live with it every October.

Which super sucks because my allergy season starts at the end of August & lasts throughout September. Couple that with always catching the same cold everyone gets at the end of September, and my body & mind is just shot by the time October rolls around.

October is my birth month. But it’s also the anniversary of my mom passing away. So…everything sucks.

Brace yourself for some “heavy shit”. I’d like to share why I am the way I am, what shaped my perspectives as I grew up, and how I’m doing right now.

When My Mom Got Sick

I actually started writing a post explaining my family’s history with ALS, but it’s still sitting unfinished in my drafts because it depresses the fuck out of me. I’ll probably share it sometime though.

My mom got sick when I was 14, right around Thanksgiving. She started having trouble swallowing & speaking because she had “bulbar onset ALS”, which means her tongue was becoming paralyzed.

In the months that followed, I became a major caregiver for her. I found myself helping her on the phone & in person with debt collectors, doctors, everyone. It got to the point where I was the only one who could still understand what she was saying without her having to write anything down.

Then she couldn’t swallow at all anymore. So, she had a GI tube placed in her stomach so she could still get some nutrition. I helped “feed” her, and with cleaning the tube.

Nobody bothered to tell me that ALS progresses aggressively in our family – until recently, no one’s survived longer than 18 months from the onset of symptoms. I thought I had time.

By the time the school year started, she was in pretty rough shape. But I was still more than happy to continue my duties as a caregiver. However, my mom’s sister had other plans. She stepped in to help, ultimately pushing me out of the way so I could “focus on school”. (How the fuck was I supposed to focus on school with my mom wasting away at home? I digress…)

October rolled around, and she was rapidly getting weak in her limbs. Hospice was welcomed in. A hospital bed was placed in the living room for her. One of the aides stole money from my parents. Her diaphragm had become paralyzed & she refused to be intubated (because at that point, the stark reality of the situation is “why bother?”) Everything sucked.

Four days after my 15th birthday, she passed away.

The Night Everything Broke

I was in my room listening to Rancid after dinner. Between songs, I heard a terrible noise from out in the living room. So I stopped & listened at the door. I knew I didn’t want to face the situation; I knew what was happening. So I spent a moment trying to find the courage to face the reality.

I walked out & stopped in the doorway to the living room. My mom’s spit sucker was full of blood, and she was laying there lifeless with my dad, aunt, & uncle crying around her. She’d died of respiratory failure – in other words, she’d just choked to death on her own blood. The terrible noise was my aunt’s despair. The whole thing was horrific. Happy fuckin’ birthday.

My dad walked up & gave me a hug; that’s literally the only time I’d ever seen that man cry. When he let go, I walked over & held my aunt as she repeatedly screamed “I’m sorry, I did everything I could”. I didn’t shed a tear. Because that’s how I am – deal with the situation, & get emotional about it later.

As a side note… There were a couple things I’d found out about much later that I wish I’d known sooner. For example, my mom had sleeping pills that she wanted to use before things got too bad for her to use them, and my aunt told her “she couldn’t do that to (me)”. Had I known, I would’ve not only given them to her to shorten her horrific suffering, I would’ve been able to say good bye.

Well…

What Comes After Death

I sat on the couch in front of her. My dad & uncle went outside to smoke cigarettes & drink for a little bit, while my aunt went in the kitchen to call the coroner & family members. They were understandably traumatized.

I got to thinking about how a body is just a shell. That this corpse in front of me was not my mom; my mom was with me in spirit. I could feel it.

Eventually, our vessels will fail us all. It doesn’t necessarily mean the end of our existence, though none of us truly know what happens in the next phase.

Then I realized I was sitting alone with my mother’s still twitching corpse. I got it in my head that this is how it is – I’m alone in dealing with everything for the rest of my life; I’m expected to be there for everyone else, and I don’t deserve anyone being there for me. After all, I was barely 15, sitting alone with my mother’s still twitching corpse.

And I screamed in devastated rage. I can still feel it, I can still hear myself. No one should have to feel like that.

My aunt came running & wrapped her arms around me. She told me “I know”. No, you have no idea. Everyone had already abandoned me & my grief. You can’t really come back from that.

Fast forward to the funeral a few days later…

Everyone met at my grandma’s house. When it was time to leave for the church, I was forced toward the front of the line out the door.

She had a doorway from the kitchen to the stairs where the basement was, and then another doorway to the sun room, and then a doorway out of the house.

It was pouring all day. Quiet thunder rumbled in the distance.

The very second I stepped foot in the doorway to the sun room, it was like lightning struck in the yard – the loudest boom I’ve ever heard in my life & everything went completely white for a moment. I stopped dead in my tracks & was immediately hit with the idea that “this is the dawning of the rest of my life”. My aunt gently pushed me out the doorway.

And that’s the attitude I felt the need to develop from there on – You don’t get to stop, you don’t get to feel. You just keep going, pushing forward, else you’ll get sucked into a pit of despair.

I know better. I even knew better then. It inevitably always catches up to you eventually. But I had no choice; I was pushed out the door without acknowledgement.

At her funeral, I stood away from everyone. I wore a beautiful black velvet dress and held a red rose that someone had given me. I looked stunning.

But everyone seemed scared of me. Most of them didn’t even know who I was, nor did I know them. Why were they even there?!? They weren’t around my whole life, they weren’t around when she was sick… Why bother being there at her funeral, “honoring” her & “expressing” condolences? I was infuriated. But at least I looked good… Ugh.

How I Buried It All (and Dug It Back Up)

I’d forgotten about all of these things for years after.

About 10 years later, I got it in my head that I’d like to advocate for ALS awareness & research. So I decided to start by participating in the local “Walk to Defeat ALS” fundraiser.

Even my family members didn’t donate. (Well, I think one forked over 20 bucks.)

During that time, I found myself researching my family’s history with the disease online. Much to my surprise (& horror), there’s a lot more articles about us than I ever imagined. (And many many more now.)

That’s when I learned that we have one of the most aggressive SOD1 mutations in recorded medical history. Unlike everyone else who gets ALS, hereditary or sporadic, it wipes us out incredibly quick. And if we want to bother getting tested to find out whether or not we’ve been cursed with the gene, a positive result for the mutation means there’s a 96% chance that that’s our death sentence.

The genetic time bomb ticks louder in my ear every year. Even though I’ve never been tested.

It was at this time that all these memories came flooding back to me. I’d apparently repressed them, and they came back like a raging wildfire, tearing me the fuck apart in the process.

All those memories came back about a year after my father had his first stroke & cancer, and I was his only caregiver (for 12 years after, until he passed away).

And that was also when I lost my friend that I’ve mentioned briefly in previous posts…. Because I was too overwhelmed to know how to express all this to him properly.

Still Healing

Here we are.

I’m mentally & emotionally burned out from staying strong for the sake of taking care of my family during some chaos that lasted much too long.

So give me some grace as I work through all this mess – I’ll keep up with my weekly posts as best I can (& they should be more uplifting than this one!)

And thank you for giving me the space to vent – I hope I didn’t ruin your day LOL ❤️

If you’ve ever carried a loss that never fully leaves, know you’re not alone. Writing about it helps — even if it takes decades to find the words.

Rock on, and take care of your heart. ❤️