Part I – Becoming the Canary

Chapter 1

The Signs Were Always There

Long before I understood what was happening inside my body, my body was trying to tell me.

I just didn't know its language yet.

Looking backward, the clues seem almost painfully obvious. They stretch across decades—childhood illnesses, repeated infections, antibiotics, difficult periods, unexplained exhaustion, fainting, rashes, hives, sensitivities, and eventually a cascade of symptoms that became impossible to ignore.

But illness rarely presents itself as a neatly organized story while you are living it.

Instead, you collect fragments.

A sore throat here.

A strange rash there.

Another infection.

Another prescription.

Another doctor.

Another explanation that accounts for one symptom but not the twenty others.

For years, I thought these were separate events.

At forty-five, I finally understood that they weren't.

A Body That Was Always Working Harder

I was sick often as a child.

Strep throat seemed to find me repeatedly. There were infections, Epstein-Barr virus, and more rounds of antibiotics than I could possibly count now. Antibiotics were simply part of being sick: you went to the doctor, you received a prescription, you got better, and eventually you got sick again.

At the time, none of this seemed connected to anything larger.

Why would it?

We tend to think of childhood illnesses as isolated events. Strep is strep. A virus is a virus. A rash is a rash. A difficult menstrual cycle belongs to gynecology. Fainting belongs somewhere else entirely.

Medicine itself often reinforces that separation.

But bodies don't live in specialties.

Mine certainly didn't.

As I got older, my periods became extraordinarily difficult. I would eventually learn about adenomyosis and endometriosis, but for years I simply knew that what I experienced did not feel normal.

There were other signs too.

I fainted.

Not constantly, and not often enough that anyone seemed to consider it part of a larger pattern. Maybe a few times a year. Enough for it to become something that happened to me, but not enough for anyone to ask the question that, decades later, would become incredibly important:

Why?

Then came H1N1.

Again, it was another illness. Another event. Another entry in a medical history that was growing longer but still looked like a collection of unrelated problems.

I recovered.

Or at least that was what recovery meant to me then: I kept going.

The Flood That Changed Everything

There are moments when a life divides itself into before and after.

For me, one of those moments was a flood.

Water entered our home, and with it came an entirely different relationship with my environment.

Until you experience significant water damage, it is difficult to understand how quickly a home—the place where you are supposed to be safest—can become something else entirely.

Walls, flooring, cabinets, insulation, adhesives, dust, moisture, building materials: suddenly the environment surrounding you becomes part of the medical story.

And my environmental history was already complicated.

I had lived in San Diego in the flight path, where aircraft and urban pollution were part of the background of everyday life. I would later become much more interested in the scientific questions surrounding cumulative exposures, including heavy metals and other pollutants associated with aviation and urban environments.

I began thinking about something I had rarely considered before:

What had my body been exposed to over a lifetime?

Not because I believed there was one toxin responsible for everything that had ever happened to me. Biology is rarely that simple.

But because I was beginning to understand the concept of burden.

One exposure.

Then another.

An infection.

Another infection.

Medication.

Hormonal changes.

Environmental exposures.

Stress.

Inflammation.

Another virus.

Perhaps the better question was not, What one thing made me sick?

Perhaps it was, What happens when a vulnerable biological system keeps being asked to adapt?

Symptoms No One Could Explain

Eventually, my body became harder to ignore.

I developed strange rashes.

Hives.

Food sensitivities.

Exhaustion that wasn't ordinary tiredness.

I simply didn't feel well.

That phrase—I don't feel well—sounds almost useless in a medical setting.

It isn't specific enough.

Where does it hurt?

What is the symptom?

When did it begin?

How severe is it on a scale of one to ten?

Those are reasonable questions. Medicine needs specificity.

But sometimes systemic illness doesn't cooperate.

Sometimes the most accurate description is simply:

Something is wrong.

I knew my body. I knew when something had changed. But explaining that change was extraordinarily difficult because the symptoms crossed systems.

Skin.

Gastrointestinal.

Immune.

Gynecologic.

Cardiovascular.

Neurological.

Autonomic.

Fatigue.

Pain.

Allergy-like reactions.

Fainting.

Each symptom could be sent to a different specialist.

And often it was.

A Body Divided Into Departments

I do not believe most of my doctors were uncaring.

I believe they were looking through the lenses they had been trained to use.

That distinction matters.

Modern medicine is extraordinarily good at specialization. If something is wrong with your heart, there is a specialist for your heart. If something is wrong with your skin, there is a specialist for your skin. Your gastrointestinal system, reproductive system, immune system, joints, nervous system—each has its own experts.

That expertise saves lives.

But specialization has a weakness.

The patient remains one body even when medicine divides that body into departments.

My symptoms didn't respect those departmental boundaries.

No single appointment seemed to contain enough of my story.

A dermatologist could look at a rash.

A gynecologist could look at my periods.

Someone else could investigate fainting.

Another doctor could evaluate fatigue.

But who was looking at all of it?

Who was asking whether the difficult periods, fainting, unusual immune reactions, joint problems, exhaustion, and family history might belong to the same biological story?

For years, apparently, no one.

I became frustrated.

And like many patients with complex, multisystem symptoms, I sometimes felt dismissed.

Tests could be normal while I felt terrible.

Symptoms could disappear before an appointment.

One specialist could reassure me that nothing appeared seriously wrong within their particular area while another symptom emerged somewhere else.

There is a peculiar loneliness in knowing something is happening inside your body while being unable to prove it in the language medicine expects.

Eventually, I started wondering whether I was ever going to understand what was happening to me.

Then COVID arrived.

When the Volume Turned Up

After COVID, everything changed.

I developed what we now call Long COVID, and it was as though someone had turned the volume up on problems my body had whispered about for years.

The fainting is one of the clearest examples.

I had fainted before COVID. A few times a year, perhaps. It had always been one of those peculiar things my body did.

After Long COVID, I fainted approximately ten times during those first years.

Ten times.

Suddenly, something I had been able to dismiss as occasional was impossible to dismiss.

I began learning about autonomic dysfunction—the nervous system responsible for regulating functions we rarely have to consciously think about: heart rate, blood pressure, blood vessel constriction, temperature regulation, digestion, and the body's response to standing.

For the first time, fainting wasn't simply fainting.

It was a clue.

And once I started treating my symptoms as clues rather than unrelated medical events, the entire story began to change.

The Article That Changed Everything

My diagnosis did not begin with a doctor telling me what was wrong.

It began with recognition.

After developing Long COVID, I came across a story about hypermobile Ehlers-Danlos syndrome—hEDS.

I read it.

And something clicked.

It was one of those rare moments when information doesn't feel new.

It feels familiar.

I recognized myself.

Then I began thinking about my family.

Relatives mentioned that other people in our lineage had forms of Ehlers-Danlos syndrome.

My father had joints that dislocated.

My sister had joint problems.

My brother did too.

Suddenly, what had looked like a collection of individual quirks began to resemble inheritance.

I kept reading.

Hypermobility.

Connective tissue.

Joint instability.

Autonomic dysfunction.

Gastrointestinal problems.

Fatigue.

Pain.

Mast-cell-related symptoms.

Gynecologic issues.

I began pulling at the thread.

And the more I pulled, the more forty-five years of medical history began coming with it.

The Aha Moment

I found a specialist in Phoenix who understood hEDS.

At forty-five years old, I finally received my diagnosis.

Hypermobile Ehlers-Danlos syndrome.

There was validation in having a name for something my body had been expressing for decades.

Not because a diagnosis magically fixed anything.

It didn't.

But a diagnosis reorganized my history.

Things that had once seemed random could now be reconsidered in context.

The fainting mattered.

The joint history mattered.

My family history mattered.

My reactions mattered.

My periods mattered.

My exhaustion mattered.

And another piece of the puzzle was mast cell activation syndrome, or MCAS, which offered a framework for understanding some of the hives, rashes, sensitivities, and seemingly unpredictable reactions that had been so difficult to explain.

I also began learning about the conditions that researchers and clinicians have observed alongside hEDS, including autonomic dysfunction and gynecologic disorders.

That led me back to my history of adenomyosis and endometriosis.

I started asking whether these, too, might be connected.

Emerging research has explored associations among connective-tissue disorders, vascular differences, immune function, mast-cell activity, pelvic pain, and gynecologic conditions. The science is still evolving, and association does not prove that hEDS directly caused my adenomyosis or endometriosis.

But for the first time, I had a biological framework that encouraged me to look at my body as a system rather than a collection of malfunctioning parts.

That distinction changed everything.

Maybe COVID Didn't Start My Story

One of the most important realizations came later.

I initially thought Long COVID had created an entirely new illness.

Eventually, I began to wonder whether it had done something more complicated.

Maybe COVID had revealed vulnerabilities that were already there.

The fainting hadn't started with COVID.

It became dramatically worse after COVID.

The sensitivities hadn't appeared out of nowhere.

The exhaustion had a history.

The connective-tissue disorder certainly had not suddenly appeared at forty-five. My genetics had been with me from the beginning.

The family pattern had been there all along.

Perhaps the virus had not written the first chapter.

Perhaps it had simply underlined sentences that had been sitting on the page for decades.

That realization changed the way I thought about illness.

It also changed the way I thought about environmental exposure.

Becoming the Canary

Once I understood hEDS, MCAS, and autonomic dysfunction, I began looking differently at the reactions I experienced in certain environments.

Why did my body sometimes seem to respond when other people around me were fine?

Why could an exposure that seemed insignificant to someone else make me feel terrible?

Why did my reactions sometimes appear disproportionate to what was happening around me?

For years, those differences had made me question myself.

Now I began asking a different question.

What if sensitivity wasn't evidence that nothing was happening?

What if sensitivity was part of why I noticed it first?

That does not mean every symptom I experience is caused by a toxin. It does not mean every environment that makes me uncomfortable is dangerous to everyone else. And it does not mean hEDS or MCAS turns a person into a human chemical detector.

Those distinctions are important, and throughout this book I will separate what we know scientifically from what we suspect, what we are still studying, and what I experienced personally.

But my own history taught me something I could no longer ignore:

Bodies have different thresholds.

Mine had been communicating its thresholds for years.

I just hadn't understood what it was saying.

Forty-Five Years of Clues

When I look backward now, I wish someone had viewed my medical history as a whole much earlier.

The childhood infections.

Epstein-Barr.

The antibiotics.

H1N1.

The difficult periods.

Adenomyosis.

Endometriosis.

The rashes.

The hives.

The sensitivities.

The exhaustion.

The fainting.

The joint problems.

The family history.

Then COVID.

Long COVID.

Autonomic dysfunction.

hEDS.

MCAS.

Not every one of these things necessarily has the same cause. That would be too simple, and this book is not about forcing every symptom into a single explanation.

It is about something more important.

Patterns.

For decades, I had pieces of a puzzle scattered across different doctors, different diagnoses, different stages of my life, and different organ systems.

No one had assembled them.

Eventually, I did.

And once I could see the picture, I could no longer look at health, illness, genetics, infection, or environmental exposure the same way.

I had spent most of my life asking:

Why is my body reacting this way?

I would eventually learn to ask another question too:

What is my body reacting to?

That question would become especially important after the flood.

Because sometimes the body whispers for years.

Sometimes an infection turns up the volume.

And sometimes the environment finally makes it scream.

I didn't know it yet, but I was becoming the canary.

When the Pieces Began to Converge

The more I learned, the more I realized that I wasn't dealing with a single condition.

I was standing at the intersection of several.

MCAS. Dysautonomia. EDS. Long COVID.

At first, they looked like separate diagnoses and medical terms. But increasingly, researchers and clinicians are examining how symptoms associated with these conditions can overlap and why some patients seem to develop clusters involving connective tissue, immune and mast-cell activity, and autonomic dysfunction.

My experience sat squarely in that complicated territory.

MCAS: When the Alarm System Becomes Too Easy to Trigger

Mast cells are immune cells designed to protect us. They participate in allergic responses, inflammation, wound healing, and our defenses against certain threats.

In mast cell activation syndrome, or MCAS, mast-cell mediators can be released inappropriately or excessively, producing symptoms across multiple systems.

That helped me understand why my reactions could seem so unrelated.

Hives.

Rashes.

Food sensitivities.

Flushing.

Gastrointestinal symptoms.

Fatigue.

Reactions that sometimes seemed to come from nowhere.

The problem was that they looked unrelated when viewed one symptom at a time.

Once I understood mast cells, I could see how one biological system might produce effects throughout the body.

It also gave me a new way to think about sensitivity.

Perhaps my body wasn't simply "overreacting."

Perhaps its alarm system was operating differently.

Dysautonomia: The System I Never Knew Could Malfunction

Then there was dysautonomia.

The autonomic nervous system quietly manages functions we rarely think about—heart rate, blood pressure, blood-vessel constriction, digestion, sweating, temperature regulation, and the physiological adjustments required simply to stand upright.

When that system doesn't regulate properly, symptoms can appear almost everywhere.

For me, fainting became one of the biggest clues.

I had fainted occasionally for years. But after developing Long COVID, I fainted approximately ten times during those first years.

Suddenly, the fainting was no longer an oddity in my medical history.

It was evidence that something fundamental about regulation in my body was struggling.

The experience also changed the way I thought about symptoms. Sometimes the problem isn't a damaged organ.

Sometimes the problem is the system responsible for coordinating everything.

EDS: The Structure Beneath It All

My hEDS diagnosis added another layer.

Connective tissue is everywhere.

It helps provide structure and support to joints, blood vessels, skin, organs, and other tissues throughout the body. That is one reason a connective-tissue disorder can feel so confusing when approached one specialty at a time.

It isn't confined to one organ.

Neither was my experience.

Once I learned that I had hEDS—and recognized the pattern of joint problems in my family—I could finally see that some of what I had considered unrelated peculiarities might share a common biological foundation.

My body had not suddenly developed hEDS at forty-five.

I had finally discovered the name for something that had been with me all along.

And Then Came Long COVID

COVID seemed to pour gasoline on everything.

Long COVID didn't give me my genetics. It didn't create a lifetime of symptoms that had already happened.

But it appeared to amplify vulnerabilities that had previously been manageable.

Symptoms that once whispered began shouting.

That experience led me to a question that would become central to my understanding of chronic illness:

What if a major biological stressor doesn't always create vulnerability, but sometimes exposes vulnerability that was already there?

For some people, that stressor might be an infection.

For another, surgery.

Pregnancy.

Extreme stress.

A medication.

An environmental exposure.

Or some combination of them.

The exact mechanisms and relationships among Long COVID, mast-cell symptoms, autonomic dysfunction, and connective-tissue disorders are still being investigated. I don't want to turn an evolving area of science into a certainty it hasn't yet earned.

But the overlap deserves attention.

Because patients are living inside that overlap whether medicine has fully explained it yet or not.

Why Do Some People React First?

This became one of the questions I couldn't stop thinking about.

Two people can occupy the same room and experience it differently.

Two people can contract the same virus and have dramatically different outcomes.

Two people can take the same medication, eat the same food, encounter the same allergen, breathe the same air, or experience the same environmental event—and their bodies may respond differently.

That does not necessarily mean one person's reaction is imaginary.

It means biology varies.

Genetics vary.

Immune systems vary.

Metabolism varies.

Previous exposures vary.

Age, hormones, nutritional status, medications, infections, stress, underlying disease, and countless other factors vary.

Most importantly, starting points vary.

Imagine two glasses.

One begins nearly empty.

The other is already three-quarters full.

Pour the same amount of water into both and only one overflows.

If we look only at the final pour, the reaction seems inexplicable.

But the final pour wasn't the whole story.

The starting level mattered.

That is how I began thinking about cumulative toxic burden.

The Bucket We Carry

We tend to search for one cause.

Was it the mold?

Was it COVID?

Was it Epstein-Barr?

Was it the pollution?

Was it genetics?

Was it stress?

But perhaps, in some illnesses, asking for the cause oversimplifies what happened.

Our bodies encounter stressors throughout our lives.

Air pollution.

Infections.

Smoke.

Metals.

Pesticides.

Solvents.

Industrial chemicals.

Building materials.

Medications.

Hormonal changes.

Psychological stress.

Poor sleep.

Nutritional deficiencies.

And countless other biological and environmental pressures.

Scientists do not have a single clinical measurement called "total toxic burden" that can simply tell us how full someone's bucket is. The effects of exposures differ enormously depending on the substance, dose, duration, route of exposure, timing, and individual biology.

So I use the bucket as a metaphor, not a medical test.

But it is a useful one.

Every person begins with a different bucket.

Genetics influence the bucket.

Past illness influences it.

Underlying conditions influence it.

Our environments influence what gets poured into it.

Our ability to metabolize, eliminate, recover from, and adapt to different stressors may influence how quickly it fills.

Then something happens.

Another infection.

Another exposure.

Another stressor.

And the bucket spills over.

From the outside, it can look as though the final event caused everything.

From inside the body, the story may have been accumulating for years.

The Canary Has a Different Threshold

And suddenly I understood the canary differently.

The canary wasn't useful because the miners believed every canary would react identically.

It was useful because its threshold was different.

It responded to certain dangers before the humans around it did.

That is the idea I keep returning to when I think about people living with complex chronic illness, environmental sensitivities, MCAS, dysautonomia, connective-tissue disorders, or post-viral syndromes.

Some of us may reach certain physiological thresholds earlier.

That does not make us universal detectors of environmental danger. My reaction cannot prove that an exposure will harm someone else.

But neither should another person's lack of reaction invalidate mine.

That distinction is critical.

Sensitivity is not proof of toxicity. But sensitivity is information.

And sometimes information from the most sensitive among us can reveal questions worth asking for everyone else.

Perhaps that is why my story makes more sense to me now.

My genetics may have shaped the terrain.

EDS may have been part of that terrain from birth.

Immune and mast-cell dysfunction may have influenced how my body responded.

Autonomic dysfunction may help explain why regulation became so difficult.

Infections may have added stress.

Long COVID may have dramatically lowered my ability to compensate.

And environmental exposures may have added additional burdens at different points along the way.

I cannot scientifically assign a percentage of my illness to each one.

I don't need to.

The lesson I took from my experience was not that I had discovered one villain.

It was that the body keeps a history.

By the time someone becomes the first person in the room to react, we may be witnessing much more than what happened in that room.

We may be seeing genetics, immune function, previous infections, previous exposures, autonomic regulation, connective tissue, and cumulative stress converging in one person at one moment.

The canary reacts first because the canary reaches the threshold first.

And perhaps the most important thing we can do when that happens is resist the instinct to blame the canary.

Instead, we should become curious about the mine.