The day my voice went quiet and my body defied me

By Tania Guillemot-Meehan

Tania is an energetic, sociable, warm, and kind person who is always thinking of others. She is a treasured wife, a mother to three young men, and a dear friend and family member to many. Tania was diagnosed with MND in December 2025. As speaking became more difficult, she quickly mastered the use of her assisted communication device which complements her heartwarming smiles, infectious laughter, and warm hugs. This is her reflection on living with MND in her own words, written using assisted communication.

Do you recognise me? I’m here but packaged differently. No bells or whistles, completely in the raw. I’m an impersonator of my former self.

Packaged differently, like a bargain-bin version nobody ordered.

Trapped inside my own head with no reliable way to express myself other than the occasional inappropriate hand signal — which, for the record, isn’t always the one I intended. Even explaining that takes longer than the conversation itself.

The smile remains, although I’m not always sure it reaches my eyes.

Robbed of life’s simple dignity, I long for what has quietly been taken away. If you imagined your fifties would be your victory lap… well, life clearly missed the memo.

Mornings are the hardest.

You wake from the blissful few moments where you’ve forgotten, only to discover today looks exactly like yesterday.

Time is no longer your own. Hope hardens into reality. Every way seems to be the wrong way. You become like a fish out of water, hoping someone notices before you stop flapping.

Your cries of frustration sometimes turn into involuntary laughter because, honestly, the universe has a wicked sense of humour. How can your own body betray you so spectacularly?

You begin to long for the simplest things most people never think twice about.

The strength to stand.

A voice to be heard.

Brushing your teeth.

Styling your hair. Applying the little potions and elixirs that once made you feel feminine.

Who knew mascara would one day qualify as an extreme sport?

Time doesn’t stop.

Your body refuses to support your weight. Your limbs seem determined to drag you down. You can no longer walk unaided, hold your bladder, stop saliva escaping your mouth— think Saint Bernard after a marathon — or shower independently, cleaning every crevice before sprinkling on the stardust that once made you shine.

You gingerly step over the dropped soap and the snake-like shower hose because this has become your daily rollercoaster. Some people pay good money for adventure rides. Mine comes free with the plumbing.

Sometimes it makes you cry with bloody frustration.

Slowly, though, acceptance arrives like the morning dew.

Shaky ground.

Heavy, uncertain steps.

Exhaustion before the climb has even begun.

Yet courage isn’t found in grand gestures.

Courage is someone quietly stepping in and doing what needs to be done.

The silent heroes who arrive without judgement, with compassion, and simply get the job done.

Sometimes that means helping you stand.

Sometimes helping you shower.

Sometimes helping you pull your pants up… while somehow preserving your dignity.

That, to me, is courage.

So the next time you see someone struggling, I ask only this:

Don’t step over them.

Offer your hand.

Offer your time.

Offer your kindness.

Never underestimate how one small act can completely change someone’s day.

As mothers, we spend our lives putting ourselves last for our children. We don’t always get everything right, but our love has never been in question. It is a sacrifice we would willingly make over and over again.

If this is my sacrifice…

So be it.

The greatest pain isn’t losing my abilities.

It’s watching the people I love suffer because I’ve lost them.

So if you remember the woman I was, don’t mourn her too quickly.

She’s still here.

Just speaking a different language…

Moving at a different pace…

And occasionally giving the wrong hand signal.