Author’s note: This post is not directly about my books or my writing process. It is about the life those books are written from. As a disabled, self-published author, my work exists inside a body and a system that shape every part of what I am able to create. I believe that context matters. I also believe the realities of living with disability matter. If you live in similar shoes, I hope you find some comfort, recognition, and a sense that you are not alone here.

I am often crying while I work.

Not because the work is hard in the way people usually mean. The work itself—writing contracts, updating websites, coordinating events, answering messages—fits neatly inside my skill set. I am good at it. I am careful. I am reliable in the ways that matter when no one is watching.

I am crying because my body hurts too much to sit upright, and I am doing it anyway.

Most of my work happens on my phone. Not as a convenience, but as a necessity. I have built an entire system of communication around text messages because my body cannot tolerate desks, chairs, or fixed schedules. About eighty percent of what I do happens in short bursts between medication, electrolytes, and lying back against pillows so my spine will calm down enough for me to keep going.

This system works only because I am allowed to build it around my illness.

The work I do supports The Woods Park & Pavilion, an event venue owned by Homeless to Home Animal Rescue & Cat Sanctuary. It helps keep the venue running, events organized, and community spaces accessible, so the rescue can continue focusing its resources where they matter most. Being able to contribute to that mission, even in limited ways, matters deeply to me.

I am paid on commission, a small percentage of rentals, rather than a wage or salary. That arrangement exists so the rescue never has to choose between paying me and helping the animals they serve. It allows me to be paid something without ever becoming a financial burden they have to justify. I can schedule meetings with renters when my health allows, usually once a week and briefly, or move everything online when there is not a single good day to spare. Contracts can be signed by email. Payments can be made digitally. When my body falters, the work bends instead of breaking.

The reality is that no one else would take on this kind of work without an hourly wage or salary, and everyone involved understands that. We need each other in different ways. That fragile balance—mutual reliance without formal demands—is what gives me the flexibility I need to survive.

Writing exists inside this same fragile structure.

I am an author. I write books. I manage the business side of publishing as best I can. And just like the work I do for The Woods, writing is something I am only able to attempt because I can build it around my illness. That does not make it easy, or sustainable, or safe for my body.

The act of writing itself is one of the few things I can still reach for when my body allows me to sit, think, and type. But the business of being an author is far more demanding. In-person events are painful. Book expos and craft shows leave me in slow motion by the end of the day, dragging myself toward a bed I know I will not leave for days afterward. I pay for every appearance with weeks of increased pain, fatigue, and recovery.

From the outside, this looks like a career. From the inside, it is another example of effort being mistaken for capacity. I do not do this because my body can handle it. I do it because creating something meaningful is one of the few ways I can remain connected to the world, even when the cost is steep.

Publishing is not evidence that I am well. Managing events is not evidence that I am well.

I love this work. What little of it I am able to do gives me purpose, structure, and a way to keep my mind engaged even when my body is failing. Being able to help, even when it hurts, keeps me tethered to something outside my illness. I am grateful for the trust I am given and for the understanding that makes this arrangement possible.

If anyone depended on me to be consistently available, to show up at set times, or to remain upright for a full workday, I could not do this work. I would not be able to do any work at all.

But this is the important part. This workaround, this job, does not make me capable of stable employment. It is a workaround that makes some kind of contribution possible without total collapse.

People see things from the outside and think it means I can do sustainable work. They see the output, not the cost required to produce it. They see effort and mistake it for capacity.

Let’s break that down a little bit.

During the off-season, things can slow. During the season, they cannot. Renters still have questions. Contracts still need signatures. Problems still arise. I have answered messages from my phone while propped against pillows, while unable to sit upright, while my heart races and my vision blurs. I have worked from hospital beds, typing through pain because the work does not stop simply because I am unwell. It only changes shape so I can survive it.

That survival is mistaken for reliability.

No one demands that I be upright for eight hours, but the work still has to get done. No one clocks my attendance, but the consequences still arrive if I do not respond. The flexibility I am given does not erase the labor. It only shifts the cost entirely onto my body.

So why do I do this? Why do I push myself in ways no one ever should for what is seemingly so little in return? That answer is simple.

I do this because I am afraid of becoming nothing.

On multiple occasions, I have been told that I would never amount to anything. That I would die in the gutter. That I would be forgotten. These things came from people who were supposed to love me unconditionally. Understandably, for quite some time I believed them. Now, I refuse to. The sad reality is that refusal has a cost.

I make myself sicker than I should be because stillness feels too close to disappearance. I push through pain, fatigue, vertigo, and brain fog because stopping feels like surrender. This is not resilience. It is fear shaped into motion.

And it is precisely this fear that the disability system mistakes for employability.

Day-to-Day Calculations

Every day begins with math.

Not numbers, exactly. Tradeoffs. Consequences. What I want to do weighed against what it will cost me to try. What I need to do weighed against what I will lose if I do it too soon, too fast, or in the wrong order.

If I want to see a friend, I have to plan days in advance. Seeing a friend means cleaning. I was raised (somewhat) a Southern Lady, we do not have company over to a dirty home. Cleaning means sweating. Sweating means a shower. A shower means a recovery day. Sometimes more than one. So the idea of a simple visit turns into a three-day calculation that I will probably lose.

Even then, nothing is guaranteed.

Some days I can function. Some days I cannot. Sometimes I am okay for a day and down for two. Sometimes I manage a few good days in a row and then crash so hard I lose a week. There is no reliable pattern. Weather changes can undo me. Overexertion can undo me. Sometimes nothing obvious triggers it at all.

When I wake up, I have to decide what kind of day it might be before I can decide what to attempt. That decision alone takes energy.

If I want to sit on the couch and use my laptop, I need medication first. To take medication, I need food. To make food, I need to manage dizziness, nausea, and weakness. I often have to sit down while something microwaves because standing for two minutes can be too much. I wait. I rest. I try again. If I push too hard, I pay for it later.

Every task has prerequisites. Every prerequisite has consequences.

I cannot clean and socialize on the same day. I cannot shower and work on the same day unless I am willing to sacrifice the next one. I cannot leave the house without calculating how long I will be upright, where I can sit, and how I will recover afterward. Even planning requires planning, and that, too, costs something.

When people talk about working remotely, they imagine flexibility. What they do not imagine is unpredictability. I cannot promise that I will be able to sit upright at a certain hour. I cannot promise that my vision will stay clear or that my heart will behave or that my body will not suddenly demand rest I cannot postpone. I cannot guarantee that today’s effort will not erase tomorrow entirely.

This is what makes reliability impossible.

I do not fail to meet expectations because I do not care. I fail because my body does not honor commitments. It does not care what I intended to do or how important it was to me. It does not negotiate.

By the time most people begin their workday, I have already spent hours calculating my spoons, deciding whether I can attempt mine at all.

A List of Losses

There is a version of me that existed before all of this.

She was not perfect. She was not in peak physical condition. I lived in a bigger body, and it did slow me down sometimes. I have always struggled in that regard, shaped in part by mental health issues that began when I was a teenager. Endurance did not come easily. Running was harder for me than it was for others.

But my body still worked.

I ran miles in school. It was hard, but I could do it. I spent eight years in marching band playing the sousaphone, one of the heaviest instruments on the field. I carried it through long rehearsals and performances. I walked miles through small towns in Texas, then miles more through Marion, Ohio. When I overdid it, I recovered. Within an hour or two, I was okay again. Fatigue passed. Pain eased. My body returned to baseline.

That baseline no longer exists.

I have played the flute for about twenty years. By senior year, I was first chair in high school symphonic band. I earned awards; music was not a passing hobby. It was a language I spoke fluently. I knew how to breathe through my mental anguish, hold my posture, and let something beautiful come from the brokenness of my soul.

Now I cannot play at all. The posture hurts my back too much. The movement of my fingers causes pain that lingers long after I stop. My body no longer allows something my soul aches for.

I tried to adapt, find a new instrument. Piano seemed like a good choice, but that did not last either. One by one, attempts fell apart, and I saw my music, pieces of my deepest self, slip away.

Singing is the last connection I have left.

For years, karaoke nights with friends were my favorite way to express that part of myself. I went at least once a week, sometimes more. Alongside those nights, I hosted dinner parties. I went to brunch. I bowled. I showed up at friends’ houses just to be there, to be present, to enjoy their company. I was the person who organized things. Who drove my friends when they needed it. Who said yes to everything. The social butterfly…

I was the social butterfly.

I studied ASL in hopes to be an interpreter. I learned a language built entirely on movement, on hands, on body language and expression. Arthritis and the beginnings of carpal tunnel ended that future before it began. Now, I cannot sign at all without severe pain.

A whole language and community that I loved slipped away.

I have been a public speaker. A community project leader. I have led fundraisers. I was always in the middle of things, participating, contributing, showing up.

Now, most days, I am alone in my home. Usually in my bedroom, in the same four walls day after day. Not because I do not want the social life, but because my body has made participation too expensive on my health to sustain. Friends move on, lives continue. I do not blame them. Consistency is how relationships survive, and I no longer have it to offer.

This is what disability took from me.

I still have ambition.

I still have talent.

I still have a drive to contribute, to be more.

But disability took away my access.

Sometimes, a lot of the time, people look at my life now and assume I have gained something from being sick. That I have gained the privilege of staying home, to live lazily, to not clock in and out day after day. I need those people, I need everyone, to understand this:

I did not trade work for rest.

I traded music for pain.

I traded language for silence.

I traded community for isolation.

I traded a body that carried me through the world for one that keeps me confined to smaller and smaller spaces.

Nothing about that feels like a benefit.

Decisions, Decisions

I did not come to the decision to apply for disability casually.

I had been on SSI before. I was approved in my mid-twenties after years of instability, homelessness, and an inability to sustain work due to severe mental illness. That support kept a roof over my head. It kept me alive. While my mental health improved, while I fought through a lifetime of demons and trauma in intensive therapy, my physical health began unraveling in ways I could no longer ignore.

In 2022, my benefits were taken away after a brief video review. I was told that because I could take online classes, I could work remotely. My physical decline was dismissed. I did not appeal. At the time, I believed I could push through. I believed that trying harder was the right answer.

By October 2023, that belief collapsed.

I had dropped my final class. I had let go of a one-hour-a-week internship I could no longer sustain. Even the smallest attempt at structured obligation had become impossible. My doctors agreed it was time to reapply.

I did not do it alone.

I contacted the same attorneys who had handled my original case. I applied in June 2024, with legal representation from the start. My alleged onset date was October 2023. It was not challenged.

The record was extensive. Medical documentation from multiple hospital systems. Hundreds of pages of lab results, imaging, and clinical notes. Letters from treating physicians. A formal functional capacity evaluation conducted in September 2024. That evaluation concluded I could not sustain even sedentary work.

At my hearing, a vocational expert testified.

The judge asked hypotheticals. My attorney asked hypotheticals. By the end of that testimony, the answer was clear. There were zero jobs available that I could perform. Even under the most generous assumptions, the job pool was effectively nonexistent.

Would you believe that I was denied anyway?

I learned this not from a letter, but from checking my online SSA account. As of January 2026, I am still waiting for the written decision explaining how the judge reached a conclusion that directly contradicted the evidence presented.

That denial did not just deny income. It denied care.

There is a medication my doctors have been trying to prescribe for years. A GLP-1 medication, not as a cosmetic intervention, but as treatment. On a short sample of Ozempic, my inflammatory markers dropped. My blood sugar improved. My pain decreased. My fatigue lifted enough that I recognized myself again.

Insurance will not cover it.

There is a surgery I need for my eyes that cannot be performed yet because my risk factors are too high. My weight is part of that calculation. My pain management options are limited until other conditions are brought under better control. Specialists hesitate. Referrals stall. Everything waits on everything else.

The first thing I planned to do with an SSI check was fill that prescription out of pocket.

Then that back pay, from the 19 month long wait and fight to get to this hearing, to what everyone, including my lawyers, were so certain would be an approval; it would have been a ticket to day to day survival. I would be able to modify my home so I could function easier, and safer. I want, I need, to be able to reduce my falls, be able to take a shower on my own. I could have created a better environment so I would stop destroying my body just to exist inside the one place I should feel most comfortable and safe.

Instead, I am stuck.

My health has continued to decline throughout this process. My partner has taken on the financial burden, the household labor, the caregiving. We are drowning in debt, trying to stay afloat while waiting on a system that insists I am capable of work it has already admitted does not exist.

This is what denial looks like in real life.

It is not a form letter.

It is not a percentage.

It is not a statistic.

It is a body waiting for care that cannot come without help.

Insurance Realities

I did not want SSI so I could stop working.

I wanted it so I could truly live my life to the fullest.

Medicaid is the only reason I am still here. It is the only reason I have access to specialists. The only reason I can afford imaging, hospitalizations, medications, and the long list of appointments required to manage a body that is breaking down in multiple directions at once.

Without Medicaid, I do not get care. Without care, I do not survive.

That is not an exaggeration. It is a fact my medical record makes clear.

The problem is that Medicaid is not designed for people like me. It assumes clean lines. Either you are disabled enough to qualify, or you are healthy enough to work. Either you are single and poor, or married and supported. There is very little room for bodies that exist in between.

I wanted SSI because it is the only stable path into Ohio’s Medicaid Buy-In program. That program would have allowed me to stay insured even if I got married. It also would have allowed me to try to work without fear. If I ever found that rare, unicorn of a job that could actually accommodate my health needs, I would be allowed to attempt it without gambling my life away.

Any consistent work, even flexible or part-time, risks costing me my insurance. And no job that pays under the strict income limits comes with the level of health coverage I require. Deductibles alone would bankrupt me in less than a month. One hospitalization would erase any progress instantly and leave me worse off than before. I am trapped in a cycle where working enough to matter disqualifies me from care, and working little enough to keep my care is not viable employment at all.

I am also trapped socially.

If I marry the person I love, the person who has quietly taken on the work of caregiving alongside his full-time job, I risk losing my insurance. I cannot acknowledge him as my partner in any legal way without endangering the coverage that keeps me alive. Love, for me, is a liability.

If I earn more than $967 in a month, I risk losing Medicaid [source]. Not because I am suddenly well, but because I crossed an arbitrary line. My education, experience, and skills place me in a strange limbo. I am too qualified for the kind of work that fits under that threshold, and too sick to access jobs that provide the benefits I would need in order to work at all.

So I do the math over and over again.

What can I attempt without triggering a review?

What can I earn without crossing a line?

What kind of life can I build without setting off alarms in a system that does not understand nuance?

This is not independence.

It is containment.

People talk about marriage as stability. For me, it is a risk factor. People talk about work as dignity. For me, it is a threat. The system insists that I choose between love, contribution, and survival, as if those things should be mutually exclusive.

They should not be.

SSI was never about giving up or letting the government fund my life. It was about creating a very narrow, fragile space where I could exist without constant fear. Where I could access care, qualify for help, and still try to offer something back to the world. Where I could marry the love of my life without risking my survival. Where I could follow my ambitions and maybe find a way to love my life again within the confines of my disabilities.

That narrow space of grace was denied.

And now every decision I make, from my health to the future of my relationship, is shaped around keeping my insurance intact rather than building any kind of life at all.

The System is So Very Broken

There is nothing exceptional about my case.

That is the part that should concern people the most.

I did everything the system asks of someone who is sick. I sought care. I followed treatment plans. I gathered documentation. I hired attorneys. I waited through years of review. I presented evidence from doctors, specialists, and vocational experts. I showed up to hearings. I told the truth about what my life looks like.

And still, the system decided I was capable.

Not capable of thriving.

Not capable of stability.

Capable of surviving just enough to be denied help.

The system looked at the fragments I manage to produce and called them proof. It looked at effort born of fear and called it employability. It looked at a body held together by calculation, medication, and debt and decided that was sufficient.

What it did not look at was the cost.

It did not measure the hours spent recovering from tasks that should have been ordinary. It did not account for the medical care delayed because insurance depends on poverty. It did not consider the relationships put on hold because marriage is treated as a threat. It did not ask what it means to build a life inside constraints designed to be unlivable.

It simply closed the file.

This is how people disappear inside systems like this. Not all at once. Not dramatically. But slowly, quietly, through denials that sound reasonable on paper and are devastating in practice.

I am still here. But the life I am allowed to live is much smaller than the one I am capable of. And the distance between those two things is not created by my disability alone.

Life shouldn’t have to be this way, not for anyone.

A Medical Note

For readers seeking clinical context, particularly those who share the lived reality of disability, the following is a list of my current diagnoses. This record has grown over time and continues to evolve as my health is actively monitored and treated across multiple specialties.

I include this not as a justification, but as context. This context is only shared in the spirit of openness, and not debate.

Current diagnoses include:

Undifferentiated connective tissue disease (treated as lupus), moderate to severe degenerative disc disease, myalgic encephalomyelitis (chronic fatigue syndrome), antiphospholipid syndrome, hypertension, mild hypertrophic cardiomyopathy (HCM), insulin resistance, polycystic ovarian syndrome, prediabetes, mild sensorineural hearing loss, meralgia paresthetica, dysautonomia/POTS, map-dot-fingerprint corneal dystrophy, acute closed-angle glaucoma, depression, post-traumatic stress disorder, borderline personality disorder, generalized anxiety disorder, obsessive-compulsive personality disorder, and adult attention-deficit disorder.