We Are Not Disposable

Since the COVID public health emergency ended, more than 650,000 people in my state alone have lost Medicaid coverage. Nationally, Medicaid and CHIP enrollment dropped 19% between March 2023 and January 2026. Roughly three in ten U.S. adults struggled to pay for health care in the past year, and 36% skipped or postponed care because of cost.

And projected cuts of more than $900 billion from Medicaid — part of over $1 trillion in health program reductions — are expected to push tens of millions off coverage by 2034.

I am one of them.

Not because I make too much money. I make under $10,000 a year.

Not because I suddenly became healthy. I have documented neurological disability spanning 20 years. Specialists. Records. Confirmation. Paper trails thick enough to choke a system.

I was removed during Medicaid “unwinding.”

Denied renewal.
Buried in paperwork.
Required to prove disability for the umpteenth time.
Given impossible documentation deadlines.
Given conflicting information by multiple agents.
Cut off after hours on hold.
Pressed “3” for callbacks that never came.
Left messages that were never returned.

While sick.

While managing dystonic storms, adrenal instability, long COVID flares, sleep loss, and missed treatments.

While rationing medication.

While losing work time — time that could have generated income and helped other people.

What was intended to be a month of writing during Rare Disease Month became a month of bureaucratic combat.

And this isn’t new.

I spent nearly two years fighting the State Teachers Retirement System in my state — repeatedly denied. All while board members were being removed by a court for “deceptive and disruptive” conduct fundamentally incompatible with their duty to protect educators’ financial security.

Despite public outcry, $8.5 million in performance bonuses was earmarked for fiscal year 2024, with individual staff packages increasing by $50,000 to $300,000 annually in previous years.

Meanwhile, retirees received a total of only 4% in cost-of-living adjustments since 2017, when they had expected 3% annually — leaving them roughly 20% behind projected benefit levels.

And their “disinterested physicians” routinely overruled the diagnoses of actual treating doctors.

After nearly three years of fighting, I was forced into SSDI qualification in January 2026 — another maze. Another proving ground.

All while headlines and political theater made a spectacle of “cutting waste.” I can’t help but picture Elon Musk on stage with his chainsaw — and the cheers that followed. Many of us knew exactly who would be under that blade.

Not fraudsters.

Not billionaires.

Not the healthy and insulated.

The chronically ill.
The disabled.
The rare disease community.

Survival of the fittest, baby.

Except here’s the part they miscalculated:

We are already fighting to survive every single day inside our own bodies.

You cannot bureaucratically exhaust people who have endured neurological storms.

You cannot intimidate people who have faced near-death on living room floors.

You cannot shame people who have spent two decades proving dystonia is real, debilitating, and life-altering.

What enrages me most is not the paperwork.

It is the implication.

That we are expendable.

That we are line items.

That we are “cost centers.”

That rare means irrelevant.

No.

Rare means resilient.

Rare means navigating systems designed without us in mind.

Rare means building small businesses because we know institutional support will not save us.

Rare means bending but not breaking.

Yes, I am angry.

But anger is energy.

And I am using it.

I refuse to let systemic administrative purging or political posturing determine my destiny. I refuse to let corruption shrink my calling. I refuse to let broken systems define my worth.

This is Rare Disease Month.

So here is the truth:

We are not disposable.

Not in my state.
Not in this country.
Not in this community.

If you are healthy and wealthy, understand this: the system you cheerfully dismantle today may be the one you rely on tomorrow.

If you are navigating this fight while sick, hear me clearly: you are not weak. The system is heavy. That is different.

And if you have the strength right now — advocate.

Share these stories.
Contact your representatives.
Ask hard questions.
Demand transparency.
Pay attention to where funds go and who benefits.

Do not let rare disease families fight in silence.

Because survival of the fittest is not healthcare policy.

And we are not disposable.

When the Strong One Breaks: Trusting God in the Calling No One Understands

When the Strong One Breaks: Trusting God in the Calling No One Understands

In October of 2023, I collapsed on the floor of a home and pet care job my mother had accompanied me to because I was too ill to be alone.

It wasn’t dramatic in the cinematic sense. There was no slow-motion fall. Just a body that had reached its threshold.

Adrenal crisis collided with dystonic storm. Muscles contorted. Vomiting came without warning. The world narrowed to sound and light and pressure.

Then the floor.

I remember the texture of the carpet against my face. I remember the weight of my limbs refusing command. I remember the strange, almost clinical awareness that sometimes comes when your body is in extremis.

And I remember my mother.

Eighty years old.
On the sofa.
Rocking.

She had already cleaned the vomit from around me. That’s what caregivers do. They manage the mess first. They protect dignity. They act.

But now she was still. Silent.

That silence terrified me.

My mother has always been steady. Raised in a culture that honors the almighty dollar, measurable progress, visible proof. Work hard. Stay calm. Don’t make waves. Don’t collapse in public. Optimism through endurance — even if it means avoiding deeper confrontation.

She believes in “Show me and I’ll trust you.”

She has lived that way.

And in that moment, watching her daughter convulse on a stranger’s floor, she had nothing to show.

No control.
No strategy.
No visible solution.

Just fear.

There is a moment in prolonged illness where you are simply tired.

Not emotionally dramatic. Just tired.

Tired of fighting for credibility with rare conditions like dystonia and long COVID that most people either misunderstand or dismiss.

Tired of navigating a system with little-to-no support.

Tired of well-meaning advice that sounds like surrender.

“You need to accept this.”
“Maybe you’re pushing too hard.”
“Stop working.”
“Lower your expectations.”
“Be realistic.”

After witnessing that collapse, my mother insisted I halt home and pet care work. I did for a short while. And yet here we are, two and a half years later, still navigating terrain that feels unstable and largely unsupported.

That day on the floor, I could have let go.

There is a pull when your body is shutting down. A softness. A drifting.

Instead, something else happened.

Light — not metaphorical. Not theatrical. Real in a way that bypassed explanation. Orbs of clarity. Energy that felt both within me and beyond me. A comfort that steadied my spirit even as my body convulsed.

Was it a vision? A near-death phenomenon? A neurological event? A spiritual encounter?

Yes.

It was all of it.

But more than the experience itself was the decision inside it.

I did not ask, “God, show me this won’t kill me.”

I asked, “If You’re not done with me, I trust You.”

That distinction changes everything.

My mother’s posture in that moment exposed a generational fault line.

She needed proof before peace.

I needed peace before proof.

For most of my life, I gave blind loyalty to people who did not earn it. I trusted human systems. Honored approval. Stayed faithful to unfaithful structures. I confused trust with naivety.

In August 2020, I committed to recovery — not just physically, but spiritually and emotionally. Recovery from patterns that held me back. Recovery from misplaced trust. Recovery from needing validation from voices that were never called to direct my life.

That collapse was another layer of recovery.

A stripping of control.

Caregivers live at this intersection.

You are told to be practical. To be financially cautious. To manage expectations. To prepare for worst-case scenarios. To listen to experts, relatives, statistics, prognoses.

And you should use wisdom.

But wisdom without faith becomes fear disguised as responsibility.

There is a difference between being informed and being governed by human opinion.

Caregiving is not simply tending to a body.

It is guarding a calling.

And calling does not always make financial sense.
Calling does not always look stable.
Calling rarely comes with applause.

Sometimes it comes with rocking on a sofa while your child convulses on a stranger’s floor.

Sometimes it comes with silence because faith feels fragile.

Sometimes it comes with watching the strong one break.

My mother’s silence that day exposed something painful: even the steady ones can fracture when outcomes are not guaranteed.

But my clarity on the floor exposed something stronger: trust does not require guarantees.

The phrase says:

“Show me and I’ll trust you.”
“Trust Me and I’ll show you.”

Caregivers, this is not a cute reversal of words.

It is the dividing line between anxiety and obedience.

If you wait until the prognosis improves, you will never trust.
If you wait until the money stabilizes, you will never step forward.
If you wait until others understand your condition, you will stay small.

Trust does not deny reality.

Trust anchors inside it.

Rare illness is lonely. Caregiving is isolating. And when there is little-to-no external support, it is tempting to measure success by visible improvement.

But sometimes the miracle is not the healing.

Sometimes the miracle is endurance.

Sometimes the miracle is that you did not let go.

Two and a half years later, we are still navigating rough terrain. My body is unpredictable. Support is thin. Understanding is scarce.

But I am still here.

And so is she.

Not because outcomes were shown first.

But because trust was chosen first.

Caregivers, listen carefully:

You will be told to halt. To shrink. To surrender your calling to caution.

Use wisdom. But do not confuse fear with prudence.

If God has placed a calling in you — whether to build, to serve, to endure, to advocate, to create — do not demand proof before obedience.

Trust Him above the noise.

Trust Him above the statistics.

Trust Him above cultural worship of security.

Trust Him even when the strong one in your life rocks silently on the sofa.

Especially then.

Because sometimes the showing only comes after you refuse to let the floor be the end of your story.

The Chrysalis

It’s Thursday morning in Elyria. January cold—the kind that settles into your bones and makes the world feel brittle. I’m at a job caring for two of the sweetest fur babies, both rescues. Billy, black and white, tilts his head the way dogs do when he hears his name, as if language itself is a gift worth savoring. Sophie barely opens her eyes from her couch-side siesta, just enough to acknowledge she’s heard her name, just enough to stay connected without leaving rest behind.

There is something holy in that kind of presence.

I’m grateful this morning that my uncle picked my 82-year-old mother up so she wouldn’t have to drive to his home in Brecksville—forty minutes away—in her ancient car on icy highways in these freezing temperatures. Gratitude doesn’t erase the anxiety she’s been carrying: about finances, about yet another disability denial, about the long string of hardships that arrived without invitation, training, or consent. Hardships that were simply thrust into her life when illness entered mine.

Caregiving is rarely chosen the way we like to pretend it is.
Often, it’s assigned.

She’s been anxious about the cold snap.
Anxious about the state of the world.
Anxious about what tomorrow might demand.

And I find myself wishing—quietly, lovingly—that she shared my deeply ingrained core of spiritual faith. Not because faith erases anxiety (it doesn’t), but because it gives anxiety somewhere to rest. We’ll unpack that more another day. For now, the truth can stand on its own.

One of the most consistent undercurrents of my life has been the fear of losing those who matter most to me. Sometimes that loss has been literal—death, relocation, job loss, estrangement, separation. In the world of rare disease, it is often the loss of life as we once knew it: the sudden, ruthless pulling of the rug out from underneath everything we had cautiously and purposefully built. Sometimes the loss takes the form of anticipatory grief—the constant bracing for impact, the quiet calculation of what might be taken next. Most often, it is both at once. A wound and a calling, intertwined so tightly I can no longer tell where one ends and the other begins.

Maybe that’s the lesson I’m meant to learn in this lifetime.
Maybe it isn’t.

We don’t get to decide what the universe—or God—assigns to anyone else’s journey.
What we do get to decide is how we show up inside the one we’ve been given.

We can choose the gifts.
We can practice gratitude.
We can look for the opportunities and lessons hidden inside moments that don’t look like blessings at all.

And then we can work—really, really hard—to pay it forward.

The beloved badass of Yellowstone, Beth Dutton, says it more colorfully. And honestly, sometimes language like that fits.

We try.
We fail.
We try again.
We fail better.
Learn better.
And do better.

We don’t do it perfectly, and we don’t do it just for ourselves.
We do it for the children.
For their children.
For future generations of this beautiful planet we’ve been entrusted with.

There are very few people—if any—whose lives have turned out exactly as they imagined.

That was never the point of the journey.

This is why the caterpillar has always felt like such a faithful metaphor for being human.

Scientifically speaking, a caterpillar’s life unfolds in stages that mirror our own more closely than we like to admit. There’s the egg, then the larval stage—an intense season of eating, growing, developing. In human terms, we might call this childhood. Then come the instars: growth phases marked by molting, by shedding skin that no longer fits. These stages parallel adolescence, which has changed drastically over time. What once ended in the early teens now stretches well into the late twenties for many of us.

During these years, caterpillars grow and shed repeatedly.
So do we.
The skin splits.
Growth demands discomfort.

But the stage I’m most drawn to—the one we talk about least—is the chrysalis.

Once fully grown, the caterpillar forms a chrysalis (or a cocoon, in the case of moths). Inside it, the body doesn’t simply rest. It breaks down. Cells dissolve and reorganize entirely. The creature becomes something unrecognizable before it becomes something new.

In human terms, the chrysalis is isolation.
It is darkness.
It is solitude.
It is quiet.

Sometimes it’s chosen.
Sometimes it’s imposed.
Often, it’s both.

If we fight that stage—if we demand productivity, visibility, or proof of worth while we’re still dissolving—we don’t emerge well. We risk never emerging at all. But if we rest within it, if we listen, if we discern what this season is asking of us, something extraordinary happens.

We don’t just pop out one day and fly.

Emergence is a process.

The chrysalis falls away slowly, and that shedding often mirrors what happens with our families of origin. Differentiation hurts. Separation costs. Becoming who we are meant to be sometimes requires distance we never planned to take. I can be honest about that without being cruel. I can acknowledge fracture without denying love. The emotional cost is real—and so is the necessity.

As inhabitants of this planet, we all have a responsibility. I believe we pay rent here not with perfection, but with intention—by choosing, moment by moment, to do the next right thing.

I’ve learned to ask myself, with uncomfortable honesty:
Is what I’m doing in this moment adding to the vision I have for my life—or quietly pulling me away from it?

As a person of faith, I understand this as living in alignment with God’s teachings, or at least striving toward them. Others may frame it differently. What matters is the shared truth underneath: the next moment is not guaranteed.

So how I spend this one matters.

I live under the authority of something greater than myself—a power fueled by love, trust, connection, and mission. When I forget that, anxiety tightens its grip. When I remember it, fear doesn’t disappear, but I become steadier within it.

If there is comfort here, let it be this: the quiet seasons are not wasted.
The fear does not mean failure.
The chrysalis is not the end of the story.

And if there is a challenge, let it be this: stop rushing your own becoming to make others comfortable.

Choose meaning anyway.
Choose purpose anyway.
Choose love, even when it costs.
Rest when it is time to rest.
Emerge when it is time to emerge.

I am not meant to fly all the time.
But when I do, may it be with wings formed by truth, patience, and grace.

Author’s Note

This essay was written in a season of quiet becoming—shaped by caregiving, chronic illness, faith, and the slow, often unseen work of transformation. It is not meant to offer answers so much as companionship, language for experiences that are often lived but rarely named. If you find yourself in a chrysalis season—waiting, grieving, listening, or learning to trust again—may this piece remind you that rest is not failure, and becoming is not wasted time.