Ten years ago, three little letters were introduced into my vocabulary: ALS.

We were in that strange in-between phase when Tom noticed weakness in his left hand, and his primary care physician thought it was carpal tunnel. The weakness started in December 2015. He was referred to a neurologist in January 2016, who ordered an EMG, followed by another referral to an ALS specialist scheduled for March 4, my 46th birthday. The official diagnosis came at the end of March.

I didn’t know then that the diagnosis would change more than our future.
I didn’t know it would change me.

It changed how I speak, how I love, how I set boundaries, and how I understand time.

Back then, I was a very different person.

To know me before ALS was to know how much I avoided confrontation.  I softened my words. I gave people the benefit of the doubt even when it cost me. I had no concept of boundaries. I believed time was something I could borrow from later. I was blissfully ignorant of many things.

I wasn’t ignorant of death, that I understood. But the idea of Tom dying from a terminal disease? That I could not grasp. Even after the diagnosis, my mind could not wrap itself around life without my handsome, green-eyed husband. He was strong. He promised to love me forever. I lived for him and Trey. We had a lifetime together, so I thought. If love alone could have kept him here, I would not be a widow today. But love is not enough when facing a disease like ALS.

And ALS changed everything I knew. Everything I felt.
ALS changed me completely.

ALS steals from you.

It steals your blissful ignorance.
And ALS steals presence before it steals life.

Before Tom died, the man I once shared decisions with, absorbed fear with, and leaned on when I couldn’t stand on my own began to disappear in pieces. The disease hollowed out the middle first…conversation, partnership, shared emotional weight. How could he give me what he no longer had while struggling with his own diagnosis and progression? He couldn’t.

I was married, but as the disease progressed, I became increasingly alone and afraid.

As caregiving intensified, the world around us grew quieter and smaller. Friends disappeared, maybe because they didn’t know what to say. Then Tom got sick and needed a tracheostomy and my world got even smaller. Exhaustion pushed me into survival mode and I wasn’t doing a great job of it.

Then COVID arrived, shrinking an already small world into near isolation. Support faded, not out of cruelty, but out of discomfort and a world that shut down. I faded too. Exhaustion and the need to keep Tom safe became all-consuming. I no longer lived life for Trey or me, but for Tom.

Let’s be clear: Tom didn’t “check out” by choice. ALS took his ability to show up the way he once had and toward the end, FTD made things 100% harder. And when that happened, I learned what it meant to carry fear, responsibility, and grief without a safety net, and I carried it alone.

That was when I began to see myself as a widow in training, someone learning how to live without her life partner, her soulmate, while he was still alive.

I was scared. Constantly.

That’s where boundaries entered my life, not as a buzzword but as a survival mechanism. Boundaries were how I stopped bleeding emotionally. They were how I kept going when there was no one left to lean on.

Ten years ago, I hated confrontation. I avoided it at all costs. I didn’t believe in myself the way I do now.

Now, I don’t mind confrontation. Not because I enjoy it. Not because I’m hardened. But because ALS taught me how much time can steal. Being direct isn’t cruelty, it’s respect. Circling issues, softening truth, or staying silent costs time. And as I learned with Tom, time was in short supply. So time is something I am mindful of.

These days, when things get hard, I sometimes think, What’s the worst that can happen, my husband dies? Been there. Done that. Still standing.

That lesson stayed with me. It shows up in how I interact with people and how I approach relationships.

Today, I view interacting with people differently.

My motto is simple: I cannot ask others for something I am not willing to give myself.

Think about that.
Do you give grace or just expect it?
Do you lead with respect or only demand it?
Are you as honest with others as you expect them to be with you?

I enter relationships honestly from the beginning. I don’t hide who I am. I’ve already been stripped bare emotionally and spiritually, so there isn’t much left to conceal. That honesty also allows me to quickly gauge how committed someone is to real connection, whether personal or romantic.

Professionally, I will always lead with respect, grace, and humility regardless of how others show up.

Personally and romantically, I communicate my needs instead of hoping they’ll be guessed. When something feels off, I say so. I don’t confuse silence with peace or compliance with love.

Surviving profound loss showed me that I could stand on my own. It also taught me that grief is a forever state and something I will carry in varying forms until my last breath. It doesn’t always remain sharp or consuming, but it never fully leaves.

After Tom died, I wasn’t opposed to loving again. I just assumed it would happen much later. I thought I needed to be stronger, more healed, before I could offer anything meaningful. Connecting with Grant during a low point in my life allowed me to be vulnerable and to show all the broken pieces of myself. Communication and honesty became part of my healing and his. In our shared pain and growth, we began building a relationship grounded in openness. That foundation revealed a depth of emotional intimacy I didn’t know was possible. It was, I believe, when my healing truly began.

Ten years ago, I lived differently.
I interacted with the world differently.
Ten years ago, I was a different person.

Today, I live intentionally. I am creating and nurturing this chapter of my life in ways I never imagined and I am grateful for it but never forgetting the cost paid for it.

Did Tom know he was training me to survive after his loss? Did he see something in me that I couldn’t yet see that I would endure and even find ways to thrive?

I didn’t become colder, but I could have. I didn’t avoid the pain, but I could have. I sat with it. I listened to it. I learned from it. I grew.

ALS took a great deal from my life, but it also stripped it down to reveal what matters most: presence, honesty, boundaries, and love that doesn’t require self-erasure.

Those lessons were earned the hard way.
And yes, I am different.
Not just happy again, but proud.

Proud of the woman who crawled her way out of the darkness and found the light again.