Brian Jeanson on ALS, Fatherhood, Faith, and Finding Freedom

What does freedom mean when you can no longer walk, talk, eat, or breathe on your own?

For Brian Jeanson, that question is not theoretical.

After being diagnosed with amyotrophic lateral sclerosis, or ALS, in 2020, Brian gradually lost many of the physical abilities most people associate with independence. Today, he communicates through technology, relies on a ventilator to breathe, and requires extensive daily care.

Yet Brian says something that sounds almost impossible.

He feels freer now than he did before ALS.

In this deeply personal conversation on Nothing Left Unsaid, Brian joins Tim Green and Troy Green to talk about living with ALS, fatherhood, marriage, depression, faith, caregiving, losing his natural voice, and the lessons he wants to leave behind for his five children.

The First Signs of ALS

Brian's ALS journey began quietly.

In September 2019, while running near Bayou St. John in New Orleans, he noticed his left foot repeatedly catching the ground. At first, he blamed a new pair of running shoes.

The problem continued.

He began tripping during workouts and while teaching physical education. Eventually, he realized something was wrong and sought medical help.

Looking back, Brian describes the beginning of ALS as surprisingly ordinary. There was no dramatic collapse or sudden medical emergency. It started with a foot that simply stopped cooperating.

In April 2020, Brian was diagnosed with ALS.

The diagnosis changed the future of his entire family.

He remembers sitting with his wife, Christy, in a neighborhood park after leaving the neurologist's office. They held hands and tried to understand what had just happened.

Later, they had to tell their five children.

Brian says that was when he understood that ALS was not happening only to him. His entire family would have to live with the disease.

The Hardest Part of ALS Was Not Losing His Ability to Walk

Brian can no longer walk, speak naturally, eat normally, or breathe without assistance.

Surprisingly, he says none of those losses has been the hardest.

The most painful loss has been his inability to physically do things for the people he loves.

He misses wrestling with his sons, throwing a football, taking his daughter on father daughter dates, and dancing with Christy in the kitchen.

Those activities mattered because they were ways he expressed love.

ALS forced Brian to discover that love could continue even when his body could no longer express it in the same way.

Today, he shows love through his eyes, carefully typed words, and simply being present with his family.

His experience raises a difficult question about identity.

If your body can no longer perform the things that once defined your role as a husband, father, worker, or friend, what remains?

For Brian, the answer is the person underneath those abilities.

Losing His Voice and Saving the Words That Mattered Most

One of the most emotional parts of Brian's ALS journey was losing his natural speaking voice.

Early in his diagnosis, a speech language pathologist encouraged him to begin voice banking.

At the time, Brian's voice was still strong, and he did not believe he would necessarily need the recordings.

As his speech began to deteriorate, the process suddenly became much more meaningful.

He began asking himself what he truly wanted to preserve.

He recorded the names of each of his children.

Then he recorded himself telling each one:

"I love you."

Those recordings are still part of his family's life today.

Eventually, Brian's natural voice became so limited that he could whisper only one word.

Love.

He now uses assistive technology to communicate, but he says what he misses most is not public speaking or storytelling.

It is ordinary conversation.

The ability to laugh, interrupt someone, make a joke, ask a quick question, or respond immediately is something most people rarely think about until it disappears.

AI Voice Technology and the Question of Identity

Brian also discusses the strange emotional complexity created by modern AI voice technology.

His preserved voice allows him to hear a version of himself from before ALS.

But over time, that old voice has begun to feel increasingly distant.

He compares it to looking at photographs of himself before the disease. He recognizes the person, but that version belongs to another period of his life.

Brian has considered using newer technology from ElevenLabs to create a more natural AI generated version of his original voice.

But the decision is not simple.

A friend with ALS told Brian that he chose not to switch to a recreated natural voice because his children had spent most of their lives hearing his current assistive voice.

To them, the recreated voice might sound like a stranger.

It raises an unusual question created by AI.

Is your voice defined by how you originally sounded, or by the voice the people you love have come to associate with you?

Depression Changed Him Before ALS Did

Years before his ALS diagnosis, Brian experienced another profound crisis.

In 2015, he went through debilitating depression and became suicidal.

At the time, Brian had a wife, five children, meaningful work, and many external reasons to feel grateful.

But he describes hopelessness as the most frightening emotion he has ever experienced.

Several people and interventions helped him survive that period, including therapy, medication, his spiritual guide, his wife Christy, and his daughter Zoe Moon.

One night, while Brian was sitting on the bathroom floor during a particularly dark period, Zoe, then three years old, began singing "Tomorrow" from Annie.

Brian describes that night as the moment his daughter helped save his life.

The experience fundamentally changed how he understood suffering.

Before depression, Brian had worked as a pastor and regularly tried to help people experiencing pain.

After experiencing severe depression himself, he realized that suffering often cannot be solved with the right words.

Sometimes the most valuable thing another person can offer is simply presence.

Brian says that period of depression ultimately changed him more than ALS did.

"Do Whatever You Have to Do to Keep Me Here"

In 2022, Brian became seriously ill and required a tracheostomy.

When doctors explained what was necessary, he did not hesitate.

He told them to do whatever they had to do to keep him alive.

His motivation was not primarily fear of death.

He felt that he was not finished living.

More importantly, he was not finished being a father.

Brian wanted to continue teaching his children what he believed mattered most, including how to suffer without becoming bitter, how to choose gratitude, how to care for their souls, and how to keep showing up for the people they love.

Those concerns eventually contributed to his book, Onward Forward, which allowed him to preserve lessons his children could return to throughout their lives.

What ALS Does to a Marriage

ALS does not affect only the person who receives the diagnosis.

It can transform the structure of an entire marriage.

As Brian lost more physical independence, Christy gradually assumed more responsibilities.

She became responsible for parenting, finances, household management, insurance, repairs, medical appointments, caregiver coordination, fundraising, and many of the practical demands that Brian could no longer handle.

At the same time, she remained his wife.

Brian describes one of the greatest challenges of long term caregiving as maintaining the distinction between spouse and caregiver.

When one partner becomes responsible for nearly every physical need of the other, the relationship can slowly begin to feel clinical.

Brian and Christy have tried to protect their marriage through communication, grace, and a deliberate reminder that ALS is the enemy, not each other.

He calls Christy the real hero of their family's story.

Learning How to Receive Help

For much of his life, Brian was more comfortable helping other people than receiving help himself.

ALS forced that relationship to change.

He shares one particularly vulnerable moment when he needed help using the bathroom and realized that he could no longer clean himself afterward.

A neighbor eventually came over to help.

Brian describes the experience as humiliating, devastating, and strangely beautiful at the same time.

His friends and neighbors simply showed up.

That experience changed his understanding of generosity.

He had always thought love meant serving someone else.

ALS taught him that sometimes love also means allowing another person to serve you.

"I Have ALS. I'm Not Deaf."

Brian also talks about how people sometimes behave differently around someone who cannot speak or move.

He wishes people understood one simple thing.

He can still hear them.

People sometimes raise their voices when speaking to someone with ALS, as though losing speech also means losing hearing or comprehension.

Brian's blunt response is memorable:

"I have ALS. I'm not deaf."

The moment captures a broader issue faced by people with severe physical disabilities.

A person's body may lose certain capabilities while their awareness, personality, intelligence, humor, and emotional life remain intact.

A Different Definition of Freedom

Near the end of the conversation, Brian explains the idea that has come to define much of his experience.

Every time ALS took another ability away, he had to ask whether that ability was really the source of his freedom.

Walking disappeared.

Speaking disappeared.

Eating independently disappeared.

Breathing independently disappeared.

Eventually, Brian concluded that physical independence and freedom are not the same thing.

"Freedom isn't found in having a healthy body. It's found in having a free soul."

Today, Brian cannot walk, talk, eat, or breathe without assistance.

Yet he says he genuinely feels freer than he did before ALS.

That statement captures the central tension of his story.

ALS has dramatically reduced Brian's physical independence while forcing him to reconsider where identity, meaning, love, and freedom actually come from.

What Brian Wants His Children to Remember

Brian does not know exactly what his children will remember about these years.

He hopes they remember something more important than the disease.

He wants them to remember that they were loved.

He wants them to remember laughter and joy.

He wants them to remember that their family chose love over fear.

Most importantly, he wants them to know that even when his body stopped working, his heart never stopped being their dad.

For Brian, continuing to live with ALS is therefore not simply about survival.

It is about continuing to show up.

Watch the Full Conversation

Brian Jeanson's story is about far more than ALS.

It is about the uncomfortable questions that illness forces people to confront.

What remains when independence disappears?

How does a marriage survive when one partner becomes the other's caregiver?

What does it mean to be a father when you can no longer physically care for your children?

Can someone lose nearly every physical freedom and still become more internally free?

Brian's answers are deeply personal.

They also challenge many of the assumptions people make about strength, independence, disability, and what makes a meaningful life.

Watch the full Brian Jeanson conversation on Nothing Left Unsaid with Tim Green and Troy Green.

Get Brian's book: https://www.theporchcollection.shop/brianjeansonne