Unjust.

That’s the only word that feels honest when I look at what this disease has taken, and what it continues to take. I’ve tried to be stoic — God knows I’ve tried — but there comes a point when the reality hits with the force of a semi, and no amount of grit can soften the impact. I’m not despondent. I’m not giving up. I’m simply arriving at a new, brutal phase of this journey, one I never asked for and never imagined would be mine.

I’ve always thought of myself as strong, resilient, the kind of person who adapts and pushes forward. But strength doesn’t make you invincible. Resilience doesn’t make you immune. I am human, and humans break. I never expected ALS to be the thing that broke me. Yet here I am — slowly disappearing, piece by piece, becoming a shell of who I once was. And for the first time, I feel anger rising in me like heat. Anger at this disease that shows no mercy. Anger at the injustice of it all.

Technology has been my lifeline, the scaffolding holding me up as my body collapses. Each lost ability patched over with a device, a machine, a workaround. But there are two losses that no amount of innovation can soften.

The first is my breathing.

It has been slipping away, almost imperceptibly at first, then with terrifying speed. Let me try to explain what it feels like, because unless you’ve lived it, it’s impossible to truly grasp.

When a coughing fit hits, I can’t get a full breath afterward. Each inhale becomes shallower than the last, as if the air is retreating from me. This isn’t like getting the wind knocked out of you, where you know — you know — that relief is coming in a moment. ALS doesn’t give you that reassurance. It doesn’t give you a moment. Without help, you spiral into respiratory distress, and the panic becomes its own suffocating force.

I learned this the hard way.

December 24.

One moment I was fighting for breath, the next I woke up in the ICU, intubated, kept alive by a ventilator and a team of pulmonologists and critical care nurses. Twelve days. Twelve days of machines doing what my body could no longer manage. The trauma of that experience lingers. The anxiety it triggers is its own kind of breathlessness — psychological, yes, but no less real. Once it starts, it’s a runaway train.

The second loss cuts just as deep: I can no longer eat by mouth.

NPO.

Three letters that feel like a sentence.

I knew it was coming. The swallow studies told the story. The choking and coughing confirmed it. My tongue, my throat, my weakened cough — together they’ve become a dangerous combination, putting me at constant risk of aspiration pneumonia and respiratory collapse.

But knowing it was coming didn’t make it easier.

I miss eating.

I fucking miss eating.

I miss cooking — the creativity, the ritual, the joy of making something delicious. I miss the way food anchors life’s celebrations: birthdays, anniversaries, holidays, or simply going out to enjoy a meal with people you love. So much of being human revolves around food, and now I’m forced to orbit those moments from the outside.

Lately, I find myself angry. Not at life, not at people — at ALS itself. Angry because it keeps stealing the things that bring joy, connection, and fulfillment. Angry because it is relentless, consuming, and indifferent to the devastation it leaves behind.

And yes, I know I still have blessings. I know I am surrounded by love and support. I know gratitude is important.

But damn it — it still sucks.

It sucks in a way that is hard to articulate without screaming.

Why does this disease exist?

Why does it take so much?

Why is it so merciless?

There is no answer.

There is only the truth:

ALS is relentless.

ALS is all‑consuming.

ALS is simply — profoundly — unjust.

TJO