Five years ago today, I had a conversation with my partner in crime.

I had been having extreme difficulty walking for a few days. She called me and said she was coming to get me and take me to the emergency room.

I told her, “Not today. Let’s go in the morning.”

She said okay.

That night, I lay in bed wondering what could possibly be causing me to have so much trouble walking for so long. I remember it was a Friday. Looking back now, I wonder: What was I thinking?

I had already been to urgent care that day. They had no idea what was going on, and I could barely get myself there.

The next morning, we went to the emergency room. After several MRIs and other tests, I was diagnosed with Multiple Sclerosis.

I couldn’t believe it.

I thought MS wasn’t genetic. My sister already had Multiple Sclerosis, so surely what was happening to me had to be something else.

But no.

Although MS allegedly isn’t directly inherited, somehow we BOTH have MS.

I thought my life was over.

I thought I was destined to be in a wheelchair. Disabled. Dependent on other people.

Because that was the image of MS I had seen.

I remember meeting Dr. Dyke, the neurologist on duty in the emergency room. He was such a nice guy. He ended up becoming my neurologist and remained my doctor until I moved away from DFW.

My BFF came to the emergency room and was there when I received the diagnosis. After that, she came to every appointment with me for years.

I don’t think I fully appreciated then how much care that required. She took time off work to attend those appointments with me. Other than my son, I had no family in DFW.

Without my BFF, I would have been alone.

I received steroids in the emergency room. It took a few hours, but eventually I was able to walk out without incident.

And then, just a few days later, my partner in crime, 18 friends, and I went to Tulum, Mexico, for a friend’s birthday trip to paradise.

Because apparently a life-changing diagnosis wasn’t going to stop the itinerary.

I told my friend Ivy, the birthday girl, about my diagnosis. She and everyone else on that trip watched over me with such kindness.

Before leaving, I bought a packable cane just in case I needed it.

Five years later, I still keep that cane in my car.

I remember calling my mom the day after my diagnosis to tell her. I didn’t want to tell her on August 21 because that was her birthday, and I didn’t want to tell my Daddy over the phone.

Some time later, my parents came to visit, and I told my Daddy that I had MS too.

He cried.

Not just a tear.

His initial reaction was deeply emotional.

And somehow, I found myself comforting him about my diagnosis.

The diagnosis also made other things in my life make sense.

For years, I had issues with my bladder. I couldn’t always hold it. I had accidents. I have memories of running desperately to bathrooms and even peeing on the side of the car.

It was just something I laughed about.

My friends knew that if I said I had to go, everyone needed to stop what they were doing and make sure I got to a restroom.

Over the years, I remember searching bladder incontinence online and seeing very clearly that one possible cause was Multiple Sclerosis.

But it never clicked.

Not until I ended up in that emergency room.

Today, I wear incontinence underwear every day.

Actually, I wear two.

Just in case.

And then there are the changes people can’t see.

The mild cognitive impairment.

Words don’t come to me the way they used to.

I used to be quick. I could pull something someone said earlier in a conversation and turn it into a funny callback. I could jump into conversations naturally. I could think of questions. I could keep the conversation going.

Now, I often sit quietly while other people are talking.

I listen.

I observe.

But sometimes I can’t figure out how to break into the conversation. I don’t have anything to add because the words simply aren’t there. Questions don’t pop into my brain the way they once did.

I go to ChatGPT for conversation starters more often than I’d like to admit.

When I was diagnosed, I thought the worst thing MS could take from me was my ability to walk.

Five years later, I realize I was wrong.

It took some of my words.

And that is an invisible pain I never knew to fear.

Not having the words has created a different kind of loneliness.

I am here.

People are around me.

I want to connect with them. I want to join the conversation. I want to explain what is happening inside of me.

But sometimes I simply can’t find the words to do it.

And losing my words hurts because it feels like I lost a piece of myself.

If MS only affected my walking, people could see me struggling.

They might slow down.

Offer me an arm.

Find me somewhere to sit.

Understand why I’m tired.

But nobody can see me searching for a word.

Nobody can see the thought that was there a second ago disappear before I could grab it.

Nobody can see how lonely it can feel to have something to say and not be able to find the words to say it.

Five years ago, I lay in bed wondering why I couldn’t walk.

I had no idea that five years later, I would be grieving something I didn’t even know I could lose.

My words.

DDC