What Aphasia Feels Like to me

Aphasia Awareness Month — Week 2

Last week, I shared what aphasia is — a language disorder that affects communication, not intelligence or identity.

This week, I want to share what aphasia feels like to me.

Because everyone’s aphasia is different.

They say, “If you’ve met one person with aphasia, you’ve met one person with aphasia.”

This is my version — my lived experience.

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🌿 The Effort Behind Every Word — What It Feels Like to Me

Aphasia didn’t take away my thoughts — it changed how I express them.

That’s the part people don’t see.

For me, every word became something I had to work for.

Not because I didn’t know what I wanted to say, but because the pathway between the thought and the word was damaged.

Sometimes I know the exact word, but it won’t come out.

Sometimes I can picture it, hear it in my mind, but it gets stuck on the way out.

Sometimes I start a sentence strong and then lose the thread halfway through.

Apraxia of speech adds another layer — my mouth knows what to do, but the signals don’t line up.

It feels like trying to play a familiar song on an instrument that suddenly has missing keys.

Dysarthria adds its own layer — the words come out slurred or soft, even when I know exactly what I want to say.

Each of these challenges is different, but for me they all share one truth:

Communication takes enormous effort.

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🌼 A Moment I’ll Never Forget: Charades in My Own Kitchen

My family and I remember one moment vividly — the first time I came home from the hospital.

My son, my daughter‑in‑law, and my husband were trying to help me make a simple shopping list.

And suddenly, we were playing charades.

Not the fun kind.

The survival kind.

Imagine trying to tell someone you want low‑sugar yogurt and a banana… without using words.

I remember acting out “banana” — peeling the air, pretending to eat it — and watching their faces twist in confusion.

I remember trying to show “low‑sugar yogurt” with hand motions that made perfect sense in my mind but absolutely none to anyone else.

We laughed a little.

We cried a little.

We kept trying.

That moment showed all of us what aphasia felt like for me — not the medical definition, but the lived one.

It wasn’t about intelligence.

It wasn’t about memory.

It wasn’t about identity.

It was about not having access to the words that had always been there.

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💜 June 10 — Talk Slow Day: Why It Matters to Me

Today is Talk Slow Day, and it matters deeply to people like me who live with aphasia, apraxia of speech, and dysarthria.

All three affect communication in different ways:

• Aphasia affects language.

• Apraxia of speech affects planning the movements for speech.

• Dysarthria affects the clarity and strength of those movements.

Because of this, I need to talk slowly.

But when I slow down, people sometimes assume I am “slow” in my thinking.

I’m not.

My intelligence is fully intact — my communication just takes a different path.

That’s why Talk Slow Day matters.

When someone slows down with me — not in a patronizing way, but in a human way — it changes everything.

When people:

• stay present

• give me time

• keep the pace steady

• stay on one topic

• listen without rushing

…I can express myself more fully.

I can join the conversation instead of watching it pass by.

Talking slowly isn’t about ability.

It’s about access — access to connection, dignity, and participation.

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🌿 The Emotional Side

That effort comes with emotion.

When communication is hard, frustration builds quickly.

I get irritated faster.

I withdraw when speaking feels impossible.

Fatigue makes everything heavier.

It’s not a change in who I am — it’s the emotional impact of living with a language disorder.

It’s the exhaustion of trying to connect in a world that moves fast and doesn’t always wait.

Sometimes silence feels safer than trying.

Sometimes I need space before I can try again.

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🌼 Communication Dignity

One of the hardest parts of aphasia is maintaining dignity in communication.

People often:

• finish my sentences

• talk around me instead of to me

• assume I don’t understand

• rush me

• change the subject when I pause too long

They mean well.

But those moments chip away at dignity.

What helps instead:

• patience

• eye contact

• time

• respect for the pause

• listening without guessing

Those small acts restore dignity.

They remind me that I’m still part of the conversation — even when the words take longer.

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🌿 The Invisible Work

Every conversation with aphasia involves invisible work:

• finding the word

• planning the sound

• managing fatigue

• staying calm when frustration rises

• deciding whether to keep going or stop

It’s a constant balancing act between effort and emotion.

And yet, every successful exchange — every word found, every sentence completed — feels like victory.

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💜 Why This Matters

Aphasia changes communication, but it doesn’t erase intelligence, emotion, or identity.

It changes how I connect, not whether I want to connect.

Understanding that difference is what restores dignity — for everyone living with aphasia, in their own unique way.

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🌼 Coming Up Next

Next week, I’ll talk about core identity vs. core personality — how I learned to separate who I am from how I react, and how that understanding helped rebuild self‑esteem after stroke.

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

What does communication feel like for you — or for someone you love who has aphasia?

Your story might help someone else feel seen.