National Aphasia Awareness Month - what aphasia is, what it is not….

🌼 Week One Blog Post: What Aphasia Is (and What It Isn’t)

Aphasia Awareness Month — Week 1

June is Aphasia Awareness Month, and every year I think back to the moment I first learned the word aphasia. I had known for many years that when people had strokes, communication difficulties were possible. My husband’s aunt had a stroke and could not speak. One of my mother‑in‑law’s friends had a stroke and lost all speech too. I remember my mother‑in‑law saying, half‑joking and half‑serious, that if she ever couldn’t speak, we should “give her a pill.”

So when I had my stroke and couldn’t talk, I expected communication to be hard — but I didn’t hear the word aphasia until months later at my neurologist’s office. I didn’t understand everything about it at the time, but I knew one thing with absolute clarity: it was going to be a challenge, but it was not going to erase me.

I was still me.

Even when the words were hard to find.

Even when communication felt impossible.

Even when my roles shifted and my daily life changed.

Inside, I recognized myself.

But I also knew that most people didn’t understand what aphasia actually is. And that misunderstanding can make recovery harder than it needs to be.

So this week, I want to start with the basics — not the medical textbook version, but the lived‑experience version.

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🌿 What Aphasia Is

Aphasia is a language disorder.

My neurologist told me that my entire language center was affected. That one sentence explained everything I was experiencing:

• trouble speaking and recalling words

• difficulty understanding at times

• not being able to read well

• difficulty writing

All of it was impacted because all of it lives in the language center of the brain.

Aphasia affects language, not intelligence.

Aphasia affects communication, not core identity.

Aphasia took away my words — but I always knew I still had my thoughts.

Even in the very beginning, when nothing came out right, I knew my mind was still working. The thoughts were there — clear, whole, and intact — even when the words refused to follow.

In those first days, I remember telling my husband, “Don’t tell anyone. I’ll get better and no one will ever know.”

He was realistic and said, “Of course people will know.”

At the time, I couldn’t accept that. I hoped — and prayed — that this would pass quickly, that there would be no lasting effects.

Looking back, I think even then I knew I was still the same person on the inside.

I just wasn’t ready to face the possibility that the outside might change.

It felt safer to hold onto the hope of “no one will know” than to imagine a life where my communication was different.

I remember standing in my kitchen one day, trying to tell my daughter in law and son something simple - that I wanted Greek yogurt.

Inside, the whole thought was complete.

Outside, nothing came out.

It wasn’t confusion. It wasn’t memory loss.

It was language — and only language — that had been disrupted.

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🌿 What Aphasia Isn’t

Aphasia is not:

• memory loss

• confusion

• a loss of self

• a loss of intelligence

• lack of ideas

But here’s where things get complicated:

Aphasia does change your roles — and that can make people feel like they have changed.

I felt this deeply in the hospital.

I couldn’t speak at all, and the nurses and doctors rarely talked to me directly.

When my husband or sister were in the room, they spoke to them.

When I was alone, they barely spoke at all.

What made it worse was that no one tried to help me communicate.

No pictures.

No gestures.

No paper or pen.

Nothing.

I understood everything.

I just couldn’t respond.

And without any tools, I couldn’t even try.

That silence — that feeling of being invisible — is something I will never forget.

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🌿 The Fear About Intelligence

One of the hardest parts of aphasia is that it looks like an intelligence problem from the outside. And I’ll be honest — even I worried about how people would see me.

I’m was a teacher. My whole life, language was how I showed what I knew. After my stroke, I couldn’t pass assessments or tests — not because I didn’t understand the material, but because I couldn’t access the language to express it.

I remember one moment clearly. I was frustrated and said, “I can’t do this.” And a person replied:

“Well… you DO have brain damage.”

They didn’t mean to hurt me. They were trying to make sense of what was happening. But it reflected a common misunderstanding:

People assume brain damage equals intelligence loss.

My neurologist explained that my entire language center was affected — and that explained everything. I could think clearly. I could reason. I could understand. I just couldn’t get the words out.

Another moment stays with me:

A few months after the stroke, I went to the grocery store by myself.

The cashier was finishing my order, bagging everything up, and I tried to say “thank you.”

What came out was gibberish — sounds, not words.

She looked at me with confusion and pity, like she didn’t know what to do with me.

Inside, I knew exactly what I wanted to say.

Outside, it looked like I didn’t understand anything at all.

That’s the hardest part of aphasia:

the outside doesn’t match the inside.

Losing language is not the same as losing intelligence.

It took time, therapy, and a lot of patience to separate those two things in my own mind — and to help others understand the difference.

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🌿 How We Usually Answer “Who Are You?”

When we meet someone new, the first question is usually:

“So, what do you do?”

And we answer with a role:

• “I’m the Associate Director of Resident Services.”

• “I’m a volunteer.”

These roles become our identity shorthand — the quick way we tell people who we are.

After aphasia, many of those roles change.

Some disappear.

Some become harder.

Some look completely different.

And when the roles shift, it’s natural to feel like you have shifted too.

I felt this the first time I couldn’t do something that used to be effortless.

It wasn’t just the task itself — it was the feeling of losing a piece of who I had been. My competence.

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🌿 Roles Changed — But My Core Identity Didn’t

Here’s what I eventually learned to put into words:

Roles are one expression of identity, but they are not the whole identity.

My roles changed after my stroke.

My communication changed.

My independence changed.

But my core identity — the part of me underneath the roles — stayed the same.

I remember the first moment I felt that truth:

I laughed — really laughed — at something silly.

And for a split second, I felt like myself again.

Not “stroke me.”

Not “aphasia me.”

Just me.

That tiny moment reminded me that my core was still intact.

Early on, I even searched for the right word to describe that part of me.

I tried “soul,” “spirit,” “ego,” “essence.”

None of them quite fit.

What I was trying to name was the part of me that aphasia didn’t touch.

I’ll talk more about that in Week Three.

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🌿 Why Understanding Aphasia Matters

When people misunderstand aphasia, they often:

• talk around us instead of to us

• assume we don’t understand

• rush us

• finish our sentences

• treat us like we’ve changed on the inside

I’ve felt every one of these.

And I know many of you have too.

That’s why awareness matters.

That’s why education matters.

That’s why this month matters.

Aphasia affects communication.

It affects roles.

It affects daily life.

But it does not erase the person.

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🌼 Coming Up This Month

Each week in June, I’ll explore a different part of the aphasia experience:

• Week 2: What Aphasia Feels Like — communication dignity, emotional impact, and daily life

• Week 3: Identity and self‑esteem after aphasia — the deeper story

• Week 4: Community, connection, and hope

My goal is simple:

To help people understand aphasia in a way that honors the lived experience — not just the medical definition.

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💬 If you’re comfortable, share in the comments:

When did you first learn the word aphasia — and what did you understand (or misunderstand) about it at the time?

Your story might help someone else feel less alone.