Casper the Unfriendly Ghost

A story about life, loss, and quiet resilience while living with ALS.

Twenty years of Echoes

I’ve lived with ALS for almost twenty years.

Twenty years of adjusting, adapting, and letting go of things I once took for granted.

Twenty years of fighting a disease that keeps taking from my body, but somehow still hasn’t UNSHAKEN MY SPIRIT.

But these two decades have taught me something I never expected—

HOW MANY GHOST A PERSON CAN COLLECT WHILE THEY’RE STILL ALIVE

Not ghosts you see in movies.

These ghosts wear the faces of people I used to laugh with, party with, celebrate with. People who once promised to be there “no matter what.” Friends who said, “Let’s hang out and watch the games.” Caregivers who swore I was “like family.”

Slowly, quietly, they drifted away.

At first, I understood. Life happens. People get busy—jobs, kids, their own problems. I told myself they’d come around again.

But weeks turned into months.

Months turned into years.

And eventually the silence grew thick, like a wall between us.

A wall I didn’t build—but one I couldn’t break down.

I Miss the Good Times More Than I Can Explain

Sometimes I close my eyes just to remember the version of my life before ALS became so heavy.

BBQs and Beach parties with "Da Bruhs" oka Frat Brothers.

Road trips with close friends—exploring different parts of the world.

Joining friends at the gym to pump iron, play tennis, and challenging them in basketball.

Going out to night clubs, Laughing until my stomach burned.

Walking into a room and hearing people call my name, not because they were checking on me…

…but because they were genuinely happy to see me.

Where did all of that go?

Where did they go?

I’ll never stop missing those good times. They’re like photographs in my mind—sharp around the edges, but fading in the middle.

Five Years in a Nursing Home During COVID

Moving into the nursing home was supposed to be temporary.

Just a few months, I told myself.

Just until I got a little stronger breathing.

Three Years later COVID hit.

Suddenly the doors locked, the halls emptied, and the world outside went quiet.

Visitors stopped. Group activities vanished. Birthdays became “drive-bys” where I saw people through glass. Holidays felt like watching life happen from behind a window.

Meanwhile, the world outside kept moving—figuring things out, reopening, returning to normal.

But inside these walls, time barely moved at all.

For five years, loneliness wasn’t something I felt occasionally.

It was something that lived with me.

It sat in the room with me.

It slept beside me.

It woke up when I woke up.

And the worst part wasn’t the isolation—

it was realizing how many people didn’t even notice I was gone.P

New Strength I Acquired

I don’t think most people will ever understand what it takes to keep going when the people you love disappear from your everyday life.

There were nights I lay awake, staring at the ceiling, listening to the machines hum, trying to remind myself that my life still mattered. I wondered if the people who ghosted me ever thought of me at all. Did they feel guilt? Shame? Maybe nothing?

But I still woke up every morning with a kind of strength nobody teaches you—

a strength you only learn through surviving heartbreak after heartbreak.

I learned to find comfort in small things:

• A nurse remembering your favorite foods and gets it from the cafeteria

• A volunteer coming by with their support dog to greet you

• Seeing the sunset hitting my bed at just the right moment

"Even when others forgot me, I tried not to forget myself"

Hope Found Its Way Back

After the lockdowns eased, a new caregiver named MJ started coming to my room. Young Ethiopian woman, soft-spoken. She, didn’t rush. Didn’t make promises she,couldn’t keep. She just showed up. Consistently.

One day she asked, “Tell me about the good old days.”

So I did.

And for the first time in years, someone actually listened—not out of duty, not out of pity, but out of genuine interest.

It wasn’t the return of everyone I lost.

It didn’t erase the pain of twenty years being ghosted.

But it was real.

It was human.

And it reminded me that even after everything I’ve been through, connection is still possible.

Who I Became during the Aftermath

Everyone, my story is NOT defined by those who vanished., that’s not entirely accurate..  My story is about surviving loneliness, surviving a pandemic locked inside a nursing home, surviving the kind of silence most people could never imagine. It’s about holding on to hope even when hope felt like it was slipping away.

I’ve lived with ALS for twenty years.

I’ve lost friends, caregivers, and people I once loved and trusted.

But I’m still here.

Still showing up for my own life.

Still finding small reasons to keep going.

Still believing love can return in unexpected ways.

My life isn’t a story of abandonment—

it’s a story of resilience.

Who needs Ghosts when you have Angles

Faith and hope have been my steady rock.

The people around me right now are like my protective angels.

I know God’s plan for me is perfect, and His love is more than enough.

My spirit will always soar, supported by the unshakeable promises of a God who loves me unconditionally.

Writing by "The Unshakeable Pen"

Wilbert Greenfield II