When Nothing is Simple

The Hidden Reality of Being Medically Complex

Having to make medical decisions on a frequent basis is exhausting, not just physically but mentally and emotionally. Even after your doctor explains your options and you have done your own research, the uncertainty does not go away. You still lie awake wondering, Will this treatment help me or harm me? Will it trigger a flare or cause damage I cannot undo? What is the cost of not treating my condition? Will it cause me to become non-functional? Is the treatment worse than the disease?

When you have multiple conditions, the anxiety multiplies. You start wondering if the medication for one illness will interact with the treatment for another, or if managing one condition will cause the other to spiral. You sit across from one specialist who is an expert in one disease but does not really understand another major diagnosis you have. The label “medically complex” often makes doctors hesitant to treat you with the same confidence they might have if you only had one condition.

Too often, there is little or no research on how multiple conditions interact, and specialists hesitate to offer a full range of treatment options because of this. They cannot answer your questions because they simply do not know. You are left trying to piece together advice from different doctors who rarely talk to each other, hoping their recommendations do not cancel each other out or make things worse. When lab results show a new issue, neither you nor your doctors can be certain which treatment caused it, or whether it is an entirely new problem.

Often, you have to decide which condition is most pressing to treat. Can you live with the challenging symptoms of one condition in order to focus on a more life-threatening one? When a condition is clearly life-threatening, it is easier to know it must be treated with priority. But sometimes, the choice is not so clear. You may find yourself having to decide whether to treat the condition that causes life-altering pain or the one that is quietly damaging one or more internal organs. Which is more important for your quality of life right now? Which could cause the most harm long-term if you delay?

These are nearly impossible questions to answer. There is often no research to guide you and multiple doctors may give conflicting advice, each shaped by their own specialty and perspective. You are left to make decisions without the data or information needed to make an informed choice, and the resulting anxiety—both while making the decision and long after it is made—can be overwhelming. Did you make the best decision? Should you have chosen differently? You will never have certainty.

If you have a rare condition, one that only a handful of specialists in the country truly understand, it adds another layer of fear. You may have to travel long distances or wait months for an appointment, knowing that even a small misstep could have serious consequences. Sometimes you realize you know more about your own illness than most of the people treating you.

Medications and treatment regimens for rare diseases are often incredibly expensive, simply because a drug made to treat only 20,000 people costs more to produce and has fewer researchers working on it than one created for a widespread condition. A rare disease has only a small “market,” while something that affects millions of people is far more profitable for drug and research companies. That leaves those of us who are medically complex with few choices, and what options exist are often priced far beyond our reach.

Every decision feels like a risk. You could get better. You could get worse. The interaction of multiple treatments could make you far worse, and neither you nor your doctor may be able to identify what caused your new symptoms. It can take months of trial and error, changing one drug or supplement at a time, just to get back to where you started. Or you might stay the same, stuck in a body that feels unpredictable and fragile.

You learn to ask hard questions and to accept that sometimes doing your best with what you know is all that can be done. Over time, you learn to live in the space between uncertainty and endurance, gathering what strength you can for the choices that must be made today. You notice the small moments when your body cooperates, and you practice grace when it does not. Living with medical complexity means accepting that clarity may never come, yet still moving forward, balancing hope with realism, and fear with faith that you will find a way through.

by Jan Mariet 10/31/2025

Small Joys Have to be Enough (Poetry)

It feels like my entire life is spent
managing my illness:
planning, scheduling, organizing medications,
tracking medical and lab appointments,
and calculating whether simple activities are even possible.
Fatigue, anxiety, immobility,

and unpredictable energy levels
are my constant companions.

I’ve always tried to find joy in small places.
But even when I succeed, sometimes I want more.
I want to find joy in big places, in big ways,
in full, happy days instead of fleeting, happy moments.

Just once, when someone asks how I am,
I’d love to say, “I’m fine” and actually mean it.

I’d love to live without timers reminding me
of medications that can’t be late,
without the days-long consequences
of losing track of time just once.

I write books that few people read.
I post words that rarely reach those who truly care.
I make graphics to fill the hours,
not because inspiration has struck.
I make crafts with love,
but rarely have anyone who truly wants them.

I share on social media just to feel some connection:
a few likes, an occasional kind comment,
and then silence again.

Those who once filled my life are kind and encouraging.
They want to hear good things, hopeful things.
I feel like I’m letting them down
on the days when I can’t wear the mask
that hides how empty I sometimes feel.

I long to be needed, but no one needs me.
I long to be productive, but I rarely am.
I used to be the first to offer help.
Now I need help too often to even ask for it.

Good news always seems to be followed
by struggle, fatigue, pain, and a wave

of isolation that never really lifts.

Food, crowds, costs, or distance
create barriers at every turn.

The hobbies that once brought joy
— crafts, gardening, even organizing —
now feel like distant memories
that are too painful or exhausting to even imagine.

When did driving ten minutes require planning and courage?
When did repotting a plant or trimming a shrub
become painful achievements?
When did finding joy become so hard?

I still try. I still smile.
I still hope.

But some days, hope feels so fragile,
like a whisper I can’t quite hear.

by Jan Mariet   10/30/2025

What Teachers Wish They Could Tell You

What Parents Don’t See: Why Teachers Can’t Explain the Disruptions in Their Child’s Classroom

I have always believed that holding children accountable for their actions is part of preparing them to become responsible adults. As a teacher for more than twenty years, I often heard colleagues say, “We can’t hold him accountable because his action was a part of his documented disability.” At times this was absolutely correct. For example, a child with Tourette’s Syndrome should not face punishment for verbal outbursts that are involuntary. The problem arises when this reasoning is applied too broadly. In many schools, students with severe behavioral outbursts, including aggression and actions that endanger others, are excused on the grounds that their behavior is “part of their disability.”

Special education law in the United States is designed to protect students with disabilities from discrimination and to guarantee that they receive a free appropriate public education. These protections are necessary, but in practice they have been applied so generally that students who cannot function in general education classrooms are often kept there with insufficient supports. The doctrine of “least restrictive environment” is sometimes stretched so far that it leaves teachers and other students unprotected. While the student with a disability is shielded from consequences, classmates lose instructional time and are denied the safe and orderly classroom they are also promised under the law.

Part of the difficulty lies in the procedures schools are legally required to follow. Federal regulations demand that schools demonstrate they have tried a series of interventions and supports, often over extended periods of time, before considering moving a student to a more restrictive setting. These interventions can include behavior charts, counseling, small group instruction, or modifications to classroom routines. During this lengthy process the student often remains in the general education classroom, even if their behavior is dangerous or chronically disruptive. Teachers and classmates may endure weeks or months of interruptions before the school is legally able to recommend a different placement.

Complicating matters further are strict privacy laws. Teachers cannot share with other parents the reasons for a student’s behavior, or the interventions being put in place to address it. This means that when a child is throwing chairs, shouting, or hitting classmates, the other parents only see the disruption without any context. To them it appears that the teacher or the school is ignoring the problem. The general education teacher, who is legally forbidden from explaining, becomes the target of frustration and even hostility from families who believe the classroom is out of control. This dynamic creates immense stress for the teacher, who is doing everything required behind the scenes but is powerless to show it, and it creates mistrust and tension among parents and students.

Schools also fear the consequences of making the “wrong” decision. If a district is judged to have removed a child from a general education setting too quickly, it can face lawsuits, formal complaints, or regulatory actions from state or federal agencies. Litigation in special education is extremely costly. Even a single case can cost a district tens of thousands of dollars in legal fees and settlements, not to mention the risk of corrective action plans or loss of funding. Faced with the choice of keeping a disruptive student in the general classroom or risking financial penalties and legal battles, administrators often choose to err on the side of inclusion, even when it is no longer working.

The financial structure of special education contributes to this problem. When Congress passed the Education for All Handicapped Children Act in 1975, later renamed the Individuals with Disabilities Education Act (IDEA), it promised to cover up to 40 percent of the “excess cost” of educating students with disabilities. That promise has never been kept. In fact, federal contributions have hovered between 13 and 15 percent for decades. The highest ever was 15.7 percent in 2020, still far short of the original pledge. As a result, states and local school districts are forced to cover roughly 85 percent of the cost of federally mandated services. In other words, districts are required to provide one hundred percent of the services with little more than a fraction of the intended funding.

Because of this funding gap, schools often lack the specialized programs, behavioral therapists, and support staff that students truly need. Instead, the responsibilities fall on general education teachers. Yet the typical general education teacher receives only one course in college that introduces the basics of special education, and in some programs a second class that touches briefly on inclusion strategies. These courses rarely prepare teachers to manage intensive behavioral needs, conduct functional behavioral assessments, or implement complex intervention plans. Once in the field, teachers may receive a handful of professional development workshops each year, but this is nowhere near the level of training needed to handle aggressive or disruptive behaviors that can halt learning for an entire class.

Special education teachers are also stretched to their limits. Although states may set caseload limits, districts regularly obtain waivers on the grounds that they cannot find enough certified staff or cannot afford them. Caseloads that are supposed to range from 15 to 25 students may balloon to 30 or 40. Special education teachers do far more than teach. They are responsible for writing and updating Individualized Education Programs (IEPs), scheduling and leading meetings, coordinating with multiple general education teachers, collecting and analyzing progress data, communicating with parents, supervising paraprofessionals, and staying current with complex federal and state regulations. Each IEP can take several hours to draft and revise, and each student requires multiple meetings per year. The workload becomes overwhelming, especially when students represent a wide range of disability categories such as autism, emotional disturbance, ADHD, or learning disabilities.

Paraprofessionals are often assigned to help, but they are usually part-time, hourly employees with limited training and no benefits. They may be tasked with serving several students at once, and general education teachers are expected to rely on them even though they have no role in hiring or supervising these aides. This patchwork system leaves teachers feeling unsupported and students without the consistency they need.

The Government Accountability Office reported in 2019 that teachers frequently lack the training, resources, and staff support necessary to manage the behavioral needs of students with disabilities. One district required teachers to record a child’s behavior every five minutes throughout the day as part of a mandated intervention plan. Teachers reported that this documentation consumed more time than actually teaching the rest of the class. Research has consistently shown that when even one or two students engage in extreme disruptive or violent behavior, it reduces instructional time and academic progress for everyone present.

Schools are placed in a no-win situation. General education teachers must manage dangerous behaviors without the training, staff, or backup to do so effectively. They are expected to implement behavior plans while simultaneously teaching twenty or more other students. If the student with the IEP does not succeed, the teacher is blamed for failing to follow the accommodations. If the rest of the class falls behind, the teacher is blamed for poor classroom management. In reality, both outcomes are driven by systemic underfunding, legal pressures, and unrealistic expectations.

The result is that Congress continues to underfund IDEA by tens of billions of dollars each year, and schools, fearing lawsuits and regulatory penalties, lean on general education teachers to fill the gaps. At the same time, privacy laws prevent teachers from explaining to parents what is happening, leaving them unfairly viewed as ineffective or uncaring. This unsustainable situation is one of the major reasons teachers leave the profession. Until IDEA is funded at the level originally promised, and schools are able to provide the necessary staff and programs, classrooms will continue to operate in crisis mode, to the detriment of all students.

This issue is not simply a matter for teachers and administrators. It affects every parent and every child in our public schools. Students with disabilities deserve appropriate services delivered in safe and supportive environments, and their peers deserve classrooms where they can learn without constant disruption or fear. Teachers deserve the training, resources, and staffing they need to do their jobs effectively. None of this is possible without Congress fulfilling its decades-old promise to fund IDEA at the level originally intended.

Families, communities, and policymakers must recognize that underfunding and overgeneralized regulations are straining schools to the breaking point. If we want to retain skilled teachers, safeguard the rights of students with disabilities, and protect the learning opportunities of all children, we must push for reform. That means demanding full federal funding, expanding access to specialized programs, and giving schools the authority and resources to intervene earlier when dangerous behaviors occur. Until then, classrooms across America will remain caught in a cycle of disruption and frustration that serves no one well.

by Jan Mariet 10/29/2025

Being Different is Not the Problem

I saw this meme on social media.  I can’t credit it to any particular author, because I’ve seen it posted by numerous people.  But I’m sharing it anyway, because it really spoke to me.

I first learned about left-handed kids in kindergarten, when I picked up a pair of scissors labeled LEFT. (Yes, back then you had to have special scissors if you were left-handed, because the “regular” ones would not work. Today, most scissors are designed for everyone.)

I gave them a try, quickly realized they didn’t work for me, and never touched them again. Did I suddenly want to be left-handed? No. But did I realize that being left-handed made some things harder? Absolutely. That simple moment gave me empathy.

About 1 in 10 people are left-handed, which means in a class of 30 kids, about three of them will be lefties. They needed special scissors that were not always available. They had to write with their arms resting on the spiral of their notebooks. When they learned to write, they had to hold their pencils differently, often smearing the lead or ink across the page. It was not that long ago in our history that left-handed children were called evil, forced to write with their right hand, and shamed for being different.

When I wore braces on my legs as a child, none of my friends wanted to wear them too. About 1 in 100 children use leg braces for medical conditions such as cerebral palsy, muscular dystrophy, or an injury. My friends did not want to trade places with me, but they did become more aware of what I faced.  They noticed. And they grew more empathetic. It was not that long ago that children with cerebral palsy or muscular dystrophy were sent to asylums and lived short lives in institutions, hidden from the world.

Today, about 1 in 31 children in the United States has been identified with autism spectrum disorder. (That figure is about 1 in 100 globally.)  How many neurotypical children do you know who say, “Gosh, I sure wish I had autism”? The answer is none.

What they do say is, “Oh, that looks hard,” or, “I did not know you had to do that.” They notice. They learn. And they gain understanding. There was a time when children with autism were not even allowed to go to school, but instead were placed in institutions, forever separated from their families.

Children, by nature, are curious. They experiment. They observe. They may even try something for themselves. But they are also smart enough to recognize when something is not for them. And in that recognition, they learn understanding. They learn compassion. They learn empathy for those who experience the world differently. — unless adults make it acceptable for these children who are not in the majority to be ridiculed, teased, or shamed, or unless adults insist that they hide their differences and “be like everyone else.” When that happens, children are not encouraged to be visible or to participate. They are taught that their differences are a burden instead of a strength.

By now, you have probably realized this post has nothing to do with being left-handed or wearing leg braces. It is about what it means to be different from what society expects. When we treat being in the minority of any group as something to be fixed, hidden, or avoided, we do not just dismiss differences. We teach children shame. We teach them guilt. And we teach them to shrink their lives to fit society’s narrow definition of “normal.”

For too long, they were forced to write with their right hand, often illegibly and painfully, instead of being allowed to use the hand that came naturally. They were barred from factory jobs where machines were designed only for right-handed workers. In some faith traditions, they were even forbidden from serving in religious roles, no matter what their calling.

For too long, children with disabilities were hidden away from the world, denied the chance to become self-supporting or to have families of their own. They watched life pass by through the smudged windows of institutions that offered none of the care, dignity, or opportunities a child needs to truly thrive.

And so, I end this by saying, “Being left-handed is perfectly fine with me.” What is not fine is when society makes anyone feel that their differences are something to be erased.

The Truth About Chronic Conditions

I was raised to believe that I should never let my disability or chronic illnesses “stop me.” For years, I lived by that mindset, pushing myself harder than everyone else, overcompensating to prove I could keep up, and constantly trying to show that I was “enough.” On the outside, it looked like determination and resilience. Inside, it left me worn down, ashamed, and convinced that slowing down or resting meant failure.

The truth is, chronic conditions can and do stop us sometimes. That is not weakness, it is reality. Pretending otherwise does not make anyone stronger. It only piles guilt on top of the burden we already carry. My worth has never depended on how much pain I can endure with a smile, or how many hours I can work just to prove I belong.

I am learning that it is okay to acknowledge limits. It is okay to rest. It is okay not to be “superhuman.” My value has never been tied to how far I can push past pain, and neither has anyone else’s. So please, stop repeating phrases like “I never give in to my disability” or “I never let my chronic illness slow me down.” Sometimes chronic conditions are debilitating. They do stop us, and that is not a personal failure.

What truly matters is not how much we can push through, but how we learn to live honestly with the bodies we have. True strength is honoring our limits with dignity, grace, and self-compassion.

True strength is not pushing past pain. True strength is honoring your limits.

Both/And (Poetry)

Introduction: Disabilities and chronic illnesses aren’t black and white. Like the world itself, they come in many shades of gray, and sometimes, contradictions exist side by side. Life isn’t divided neatly into ‘healthy’ and ‘unwell.’ There are countless ways of being, with shifting energy and overlapping truths. We can live in the space of ‘both/and.’

Both/And

by Jan Mariet

I can be strong and still need support.

I can be hopeful and still be afraid.

I can be caring and still set boundaries.

To be human is not either/or.

It is both/and.

Both/Andby Jan MarietI can be strong and still need support.I can be hopeful and still feel afraid.I can be caring and still set boundaries.To be human is not either/or.It is both/and.

Light and Its Absence (Poetry)

Light and Its Absence

by Jan Mariet

Sometimes we imagine the world in black and white,
as if life must choose one way or the other.

We tell ourselves we are desolate
or we are full of hope, but never both at once.

Yet the truth is gray.  Our fears, our longings,
our thoughts that double back on themselves;
they live side by side, never asking permission.

To be human is to carry contradictions,
to hold unity in pieces that do not match
and yet belong together.

Don’t you see?

I can be okay and still need support.
I can be helpful and still say no.
I can be good and still make mistakes.

I can yearn for growth and tremble at change.
I can lift my eyes in hope and still question tomorrow.

I can care fiercely and still guard my boundaries.
I can be independent and still receive help with gratitude.

I am not required
to choose one side of myself
and banish the other.

I am the paradox,
the living proof that light and its absence
can inhabit the same sky.

Written by Jan Mariet  10/20/2025

Light and Its AbsenceBy Jan MarietSometimes we imagine the world in black and white,as if life must choose one way or the other.We tell ourselves we are desolateor we are full of hope, but never both at once.Yet the truth is gray.  Our fears, our longings,our thoughts that double back on themselves;they live side by side, never asking permission.To be human is to carry contradictions,to hold unity in pieces that do not matchand yet belong together.Don’t you see?I can be okay and still need support.I can be helpful and still say no.I can be good and still make mistakes.I can yearn for growth and tremble at change.I can lift my eyes in hope and still question tomorrow.I can care fiercely and still guard my boundaries.I can be independent and still receive help with gratitude.I am not required to choose one side of myselfand banish the other.I am the paradox,the living proof that light and its absencecan inhabit the same sky.Written by Jan Mariet  10/20/2025

Unseen (Poetry)

Unseen

by Jan Mariet

Those who silently struggle carry
a thousand untold stories.
They do not speak
of the shadows that cling to them,
or the heaviness
that steals their light.

They become expert at silence,
at suffering quietly behind
locked doors,
hiding everything
in small, hollow words
that reveal
nothing.

They imagine strength, rising
toward growth,
toward creation, toward purpose,
instead of being consumed
by exhaustion
and pain.

Each time they whisper, “I’m fine,
their mask draws
across the storm inside.

Unrelenting weight
divides a soul in two.

One side reaches for meaning,
for independence, for
the dignity of work
and purpose.

The other side knows
the truth: that
pain will rise,
fatigue
will return,
and each attempt
will crumble to dust.

It is the cruelest battle,
between the boundless soul
that longs to rise
and the weary body
that pulls it back to earth.

(10/10/2025)

After the Battle

After cancer treatment ends, friends and family often expect us to be ‘better’ within a week. They look for us to be ‘back to normal,’ returning to work, handling family responsibilities, and resuming an active life within weeks or months. But the truth is very different. Many of us did survive the cancer, but our bodies carry the hidden damage of the treatments that saved us. Kidney damage, stents, GI issues, incontinence, nerve damage, neuropathy, crippling weakness, and relentless fatigue are just a few of the lasting effects. What others see as the end of the battle is, for us, the beginning of living with its consequences. We survived the war, but our bodies and our ‘normal’ functioning became the collateral damage. We are alive, but we will never be the same.