I found my son’s dead body on the evening of April 26, 2020. Quentin had turned 18 earlier in the month; it would be his last birthday.

Beyond saying he did not succumb to COVID-19, I am still not emotionally ready to discuss the details outside of therapy. I am unable to do much of anything anymore. Most of my days involve listening to the bland noise of sports television while doomscrolling through social media. Grief consumes me, and I struggle with eating, reading, and sleeping.

Whenever I close my eyes, I experience 3-D flashbacks of finding him and random scenes from his all-too-brief life.

Like the red View-Master I had as a child, the images of my son’s life and death flicker in my mind. The tools I have acquired from years of managing chronic illness and disability — prayer, meditation, breathing exercises, listening to music — are powerless to assuage the grief. The torrent of images eventually passes, but it always returns. Maybe, it always will.

Grief consumes me, and I struggle with eating, reading, and sleeping.

Even before he passed away, focusing for more than a short time was hard because of chronic pain from erythromelalgia: a rare disease that causes burning neurological sensations in my legs, feet, hands, and ears. Now, my fleeting attention span has shrunk even more.

My therapist and psychiatric nurse practitioner have diagnosed me with PTSD. I already take medications for anxiety in addition to the multiple meds that I take to manage the chronic pain, which accompanies me each hour of each day.

The pandemic compounds my mental and physical suffering. Because of my illness and compromised immune system, my fear of acquiring the coronavirus rises every time I or one of my family members leaves the house. Do I have my mask? Where is the hand sanitizer? Am I socially distanced enough? Did I wash my hands since I got back home? Did my family?

The pandemic compounds my mental and physical suffering.

My two older children returned to their universities in August, and I worry about them because of their brother’s death and the pandemic. College campuses seem like a coronavirus breeding ground, and my oldest is 2,000 miles away. What if my kids get sick? How will the pandemic affect their education and future job prospects? How will their brother’s death affect their mental health during the academic year? My therapist reminds me that some of this concern is natural, but part of it relates to PTSD.

While mourning the death of one child, I dread the possibility of losing another one.

The constant political upheaval exacerbates my mental and physical wellbeing too. The news plays videos of Black men being murdered by the police, and they fail to first give a warning of the disturbing pictures. Images of lynchings show up in my Twitter timeline. As armed forces shoot tear gas toward peaceful demonstrators, my anxiety increases. My ability to pay attention to anything else decreases.

How can I do anything with unrest in the streets?

Plus, the ineptitude and rampant corruption among political leaders impairs my ability to concentrate. Lack of adequate federal, state, and local guidelines related to the pandemic have led to the deaths of hundreds of thousands. These same authorities drag their feet when it comes to acting against police officers who we have watched execute people. Can I trust policymakers who refuse to listen to public health experts while they politicize safety and consolidate power at the expense of other people’s wellbeing?

At this significant moment, thinking about my own situation feels selfish. Can I get past my own situation and pay attention to someone else? The pandemic compounds my mental and physical suffering. The pandemic and politics are also creating a new social setting in which I and all of the rest of us live.

Focusing, of course, is a struggle because rumination comes effortlessly. I reflect on my son’s life, my disability, mental health, how medications might affect me long-term, weight gain, political uncertainties, my daughters’ futures, the growing number of COVID-19 cases, becoming an empty-nester, combatting racism, and my feelings of inadequacy to meet the demands of this societally transformative moment.

Signs of hope emerge in my encounters with other people.

I want to find hope in this morass. Wallowing in despair feels futile and self-defeating. So, I try to think my way into hoping that things will improve.

When rational, I can detect a few hopeful signs. Sometimes they are faint, yet signs of hope emerge in my encounters with other people.

After Quentin’s passing, friends (some of whom I haven’t talked to in years) called, texted, and sent cards. People expressed their condolences tangibly; they brought food, loaded up a Door Dash account, and contributed to a Go Fund Me. I had no idea how expensive dying is, but the generosity of friends and strangers reminded me that we can and do empathize with one another’s distress.

Both my therapist and psychiatric nurse practitioner assure me that my mental health is as sound as can be expected after such a short period. I trust their word, and they sound hopeful. Large tears trickle now whereas they poured a month ago. With time and work, they assure me, I will be alright.

Finding hope during a pandemic is not easy. However, medical professionals and researchers give me hope. Their courage, creativity, and selflessness help me think that we can face daunting challenges together and maybe find a cure, eventually.

The demonstrations shine bright for me, and concrete change has already begun. City councils have passed police reforms. Cities are painting Black Lives Matter on the streets and removing racist monuments. Corporate sponsors continue pressuring sports teams with racist names to change their designation, and NBA players put messages about social justice on their jerseys. Mostly, though, young people have taken the lead to bring about a just and equitable society.

Finding hope during a pandemic is not easy.

Yet, I have a gift for being cynical. Just as I can think my way into hope, I can look at the evidence and logically conclude that everything is futile.

My mental health may be as strong as it possibly could be, but I continue to feel an empty space in my chest. Flashbacks arise out of nowhere, sleep eludes me, and apathy has replaced my joy.

Neither grief nor PTSD are going to magically vanish, and neither is the incurable erythromelalgia that burns without ceasing.

Heroic nurses and physicians strive to help patients with COVID-19, but many are coming down with the virus. Over 1,200 have died, and all are facing long-term mental health issues. As the virus continues to flourish around the globe, reckless political leadership exacerbates the contagion. The U.S. is another surge of the pandemic with over a hundred thousand cases becoming a daily reality, and pharmaceutical corporations are suggesting exorbitant prices for possible COVID medications. There’s good news about a potential vaccine, though.

But, my anxiety flares and my ability to pay attention decreases. Again. How can I do anything while people are dying from a contagion?

Corruption and ineptitude drench the powers-that-be. Billions of dollars end up in the hands of the ultra-rich who reportedly pay very little in taxes while I wonder if I will continue to receive my monthly disability check. A rush to reopen businesses has led to coronavirus infecting record numbers of people, yet governors ordered schools to reopen in person. As a disabled teacher, I fear my former colleagues and students may end up sick or dead due to the virus.

How can I do anything while people are dying from a contagion?

Meanwhile, racism has not ended. Power remains in the hands of a few wealthy, mostly white men. Voting restrictions hinder millions of Black people from exercising their franchise. Police reforms may have begun, but dismantling oppressive systems barely register in the national consciousness.

As a chronically ill disabled person, I live with the hopelessness of a for-profit healthcare system that links my medical insurance to my wife’s job. What will happen if she loses her job?

I want hope. I long to hope. I grasp for hope. But my will to hope is not strong enough to sustain me when the preponderance of the evidence screams doubt.

Instead of thinking my way into hope or despair, I put my faith in hope. I believe in hope’s power to animate during uncertain times. No one needs hope when they are healthy or when life is easy. Hope exists for apocalyptic times of unbearable grief, global plague, and political disorder. So, I believe in hope now more than ever even when I find any number of reasons to quit hoping.

Hope exists for apocalyptic times of unbearable grief, global plague, and political disorder.

Hope is always ambiguous because it casts a vision of how things can be, not how things will be. There are no predetermined outcomes, and I am not inclined to imagine Sisyphus happy. Unless miraculous breakthroughs happen, I will remain disabled and continue to suffer flashbacks. The pandemic will rage until scientists find a vaccine, and that is not guaranteed.

Nevertheless, achieving a just future requires hoping for it now. Faith in that future despite obstacles enables me to look through the uncertainty with steadfast clarity. Treatments help alleviate my chronic pain and anxiety. Social change is happening. Slowly. If NASCAR can eradicate the Confederate flag from its properties, anyone can change. Maybe.

A profound moment of hope washed over me recently. I watched an interview with 93-year old Opal Lee; she marched in support of Juneteenth becoming a federal holiday. How can I turn away from a woman who has lived through Jim Crow, the Civil Rights Era, and our own times? Even if I cannot march, I can hope. Ms. Opal made me a believer.

Even if I cannot march, I can hope.

Tasting the bitter fruit of mourning, chronic disability, PTSD, global pandemic, and social unrest compels me to believe in hope — especially when I find myself powerless to hope. I cannot promise that the arc of history bends toward justice, but I hope it does. If Ms. Opal can believe in hope, so can I.

A Chronically Ambiguous Hope was originally published in Disability Acts on Medium, where people are continuing the conversation by highlighting and responding to this story.

Years ago, I found myself binge-watching Scream Queens (2015–2016), a comedy that satirized all of those slasher films I mainlined in the late 1990s and early 2000s. It brought back to a time when horror was something I couldn’t get enough of.

For much of my young life, I was a horror buff.

I watched Michael Meyers and Freddie Krueger. I watched random serial killers target mostly white women. I watched evil children creep out of the corn. I kept my eyes on the monsters lurking in the shadows and those that stalk during the light of day. Monsters weren’t always the creatures that went bump in the night; they were human too.

I watched Scream (1996), waiting for that exact moment that Sid realizes that those who want her dead are much closer to her than she could ever imagine. I watched the sequel too. Sid had already survived once. I had to watch her survive again. I watched the young women of The Craft (1996) proudly declare, “We are the weirdos, mister,” come into their power, and then lose had control. I watched The Lost Boys (1987), one of my favorites, with its callous, teenage vampires. Carousels still make me flinch. A little.

Monsters weren’t always the creatures that went bump in the night; they were human too.

Not only did I watch any film I could, I mastered in Stephen King’s novels, which I started reading in middle school. His ability to make me care about his characters and then viciously destroy them was as fascinating as it was disturbing.

Horror showed me, taught me really, how our bodies could be unmade. How bodies were maimed, cut, shot, tortured, and killed. How a body’s hurts could be physical and starkly visible. How blood splattered on the floors and walls was a sign that things had come undone. Horror documented the consequences of violence, physical and psychic. Horror was a warning of how terribly wrong our lives can go.

I was a horror buff until I wasn’t. Maybe, I moved past horror. Maybe, horror moved on without me. It is hard to say. Or it isn’t, and I won’t.

I can pinpoint the exact moment I drifted away from most horror movies. I made the mistake of watching The Ring (2002) in a dark, movie theater. There was a moment that I could walked out of the theater into the overly bright lobby, and I would have been okay. I could have taken what I thought was the end of the film and moved along. But, I didn’t leave. I stayed until the credits rolled, and then, I didn’t sleep for days.

Horror was a warning of how terribly wrong our lives can go.

I became convinced that a scary little girl might climb out of my television too. I knew she would hunt me down like all those others who had the misfortune to watch a video. This was not realistic horror but supernatural. I knew that. I did. Really.

And yet, The Ring unsettled me. A child comes back from revenge because of how she was treated. This supernatural vengeance was not comforting because it hit too close to home. It was a story that I could almost imagine myself in, so I locked myself in my bedroom of a barely two-room condo with the dog and the cat to create a sense of distance between me and our TV. To pretend that safety was as easy as locking a flimsy door. To pretend that I would have been a victim to a ghost child’s rage. To pretend that I wouldn’t have actually been that child set on vengeance, even as I knew who I would have been in the story. Not the hunted, but the hunter.

So, Scream Queens pulled me back into horror. It evoked something familiar, comforting even. A storyline I could follow about the horror of the world. But, it had a new twist, the sorority girls of Kappa Kappa Tau fought back against the Red Devil who’s hunting and killing some of them. I started watching Scream Queens, but couldn’t keep up with the show each week. I wanted to see how it ended. I needed to.

But, life got in the way. I fell behind. I left the girls behind. Until I didn’t.

I started watching Scream Queens again as my dog, who dutifully hid with me in a condo, was dying. I could do nothing but bear witness to her slow, painful decline. My partner was out of town. The kids were at school and preschool. I felt helpless and alone as I checked on my old dog throughout the day and night.

I turned to Scream Queens, a story far, far away from my real life. I was never in a sorority. I was never a rich kid, just a working class one who held down two or three jobs at a time to cover all the bills that scholarships didn’t. I refused to pledge because I feared the expenses that came along with membership. I was never a mean girl like Chanel (Emma Roberts) with her obvious disdain for other people, her preferred cruelty, and her casual racism.

I watched Scream Queens to chase mortality and loss from my waking thoughts. It was a weird choice to watch a show that dwelled in gruesome spectacles of death and the numerous ways bodies can be unmade while I was waiting for my dog to die. I was watching tragedy while hoping that I could avoid one. I couldn’t. Our beloved dog passed away with us beside her. I couldn’t stop her from dying, but I could make her passing as peaceful and painless as possible. There would be no gruesome spectacle here.

And I kept watching Scream Queens.

A particular episode caught my attention and held it. In episode 8, Dean Munsch (Jamie Lee Curtis) warns Kappa pledge, Grace (Skyler Samuels), about investigating a past tragedy that happened at the sorority house. Munsch, in her typically abrupt way, explains:

Do you know why I never went into therapy? Because the less we know about ourselves, the better. Rummaging around in your life, it’s like digging through a landfill. Sure, you may happen upon something interesting, but you’re gonna get filthy.

I paused the episode and replayed the scene. Not once, not twice, but three times. I eventually finished the episode and moved onto the next, but Munsch’s lines stuck with me. They got wedged in my brain, and I couldn’t get them to leave me alone.

Rummaging, digging, rummaging, digging, rummaging, digging…getting filthy.

Munsch was talking about therapy, but I realized how quickly I could replace “therapy” with “writing a memoir.” Memoirists, after all, rummage around in our lives to uncover material. We excavate events, reconstruct them, and write them.

In Art of Memoir (2015), Mary Karr describes the psychological toll of memoir: suffering is requisite, not optional. “Writing a memoir,” she notes, “is knocking yourself out with your own fist, if it’s done right.” Memoir appears as “a major-league shit-eating contest.” This genre, at least for Karr, requires writers to battle with ourselves and challenge the narratives we create for ourselves. Easy stories emerge as too easy. Tidy narratives as too clean. We must dig beyond the stories we tell ourselves to find truth and bring it to the light. Karr continues, “No matter how self-aware you are, memoir wrenches at your insides.”

Writing a memoir is hard, and you get filthy.

I have now written two memoirs, though they aren’t quite memoirs. They are memoirs in essays, not a story from beginning to end, but fragments that piece together stories that aren’t quite whole. I prefer essays — their shorter form, contained and compact. A close-up rather than a chronology. My memoirs in essays never seek to master what has happened. They are my attempts to make sense of what has happened and how that feels.

Writing about feelings feels easier than talking directly about them. I have spent much of my life suffering in silence and working it out on the page. (A few years of therapy means I don’t keep my suffering silent, but I do still work things out through writing.)

Years after hearing them, Munsch’s words still hang around, “Rummaging around in your life, it’s like digging through a landfill.”

Writing a memoir is hard, and you get filthy. Your hurts becomes visible with every word. Your suffering manifests line by line.

That’s the burden of the memoirist. Our material is our selves. We’re closer than close to what happens to us. We often don’t have the luxury of distance or feigned objectivity to make the work of writing our lives easier. We share same skin as the subject. We know when something or someone shattered us. We were the ones picking up the pieces.

When I try to conjure images of what writing a memoir is like, I tend to come back to vivisection, the process of performing operations on live animals for research. (Yeah, it’s gruesome. I know.)

That’s the burden of the memoirist. Our material is our selves.

Except that, in memoir, I’m both the experiment and experimenter. My skin cut back. My organs on display. My body opened up, so you, the reader, can see what goes on in intimate detail. There’s a fleshy vulnerability of being on display; all the soft bits exposed and unprotected. As I write, I pull back layer after layer. I can excavate truths about myself. I rummage around in the landfill and then try to make meaning out of what I find or don’t. And all the while, I know that I have to let the reader into see.

There’s a stark honesty in putting one’s life on display for others to read. There’s courage in telling our stories. (At least, I hope so.) There’s audacity in documenting what and how we manage to survive. There’s a tenacious hope in showing how we can be unmade but also how we remake ourselves.

Writing memoirs helps us understand both the horror and hope in our own lives. Yes, we are fragile. Yes, the lives we create for ourselves are fragile.

It’s the mundane that can actually destroy us.

Memoirs show that the worst can and does happen. That life can be capricious and cruel. That our lives ends as surely as they begin. That suffering is not optional, but requisite. That we can’t quite help what we’ve inherited, but we can survive it. That terrible things happen no matter what type of person you are. That reasons are never as clear as we need them to be. That making sense is sometimes the best we can do as we sit among the ruins of what we hoped our lives would be. That loss is a loss, no matter what heartbreaking form it takes. That life moves on with no attention to our suffering.

Maybe I stopped watching horror when I realized that the spectacular isn’t the most horrifying. It’s the mundane that can actually destroy us.

But alongside the horror is the hope that while we can shatter into tiny, sharp fragments, we can also meld them unevenly back together again. What is unmade can sometimes be remade into something stronger. Yes, terrible things do happen but so do joyous, beautiful ones that make us stop and pay attention to the possibility and potential that lay in front of us. In the ruins, we can learn to build again.

I’m still here; a memoir is my evidence.

While writing memoir often leaves me little banged up and bruised for my efforts, I leave my essays feeling much freer and sometimes even hopeful. Munsch, then, is wrong about therapy. You might dig through the landfill and come up filthy, but you also can dust yourself off. Sometimes, we leave the landfill and come out knowing more about ourselves than we did before.

When I put my suffering, those horrors that linger, on the page, something happens. I’ve confronted events that hurt me. The confrontation might suck. It might take years to face head on. I might be filthy and worn down, but I leave with what I survived. That is why I write essays about my life that become memoirs. There’s suffering and survival. Our stories are always a combination of both.

I’m still here; a memoir is my evidence. And in that, there’s hope.

Kelly’s new book, Final Girl: And Other Essays on Grief, Trauma, and Mental Illness, will be out 11.3.2020. Yes, it’s a memoir.

Wrenches at Your Insides was originally published in Disability Acts on Medium, where people are continuing the conversation by highlighting and responding to this story.

Why can’t you be happy? they ask, as if the world isn’t aflame.

As if your happiness matters.

As if the already cracked world isn’t about to shatter before we can cement it back together.

As if you can simply be happy.

As if you should be happy.

As if you can shift from despair to joy because you wish and will it to be so.

As if your wishing and willing matters.

As if you aren’t depressed. Again.

As if depression can be cured by someone telling you that you can be happy.

As if depression can be cured. Period.

As if you have control over your brain.

As if you have control over anything.

As if depression, your depression, isn’t a legitimate reaction to our broken, engulfed world.

As if there aren’t flames and cracks and ashes and fragments.

Why can’t you be happy? they ask.

As if asking the question matters.

As if happiness is the right response to now.

Why can’t you be happy? they ask.

Again and again and again.

You want to shout, Fire, fire, fire, fire!

But the words get lodged in your throat.

You choke. You can’t breathe.

You wonder why they aren’t suffocated by the smoke filling your lungs. Does it not fill theirs too?

You wonder why they can’t feel the heat.

You wonder why they can’t see the gaping cracks at their feet.

Because if they can’t smell the smoke or cut their hands on jagged edges, how can I make them?

While your eyes sting, your skin blisters, and your hands are torn and bloody, they remain unscathed.

You can’t help but be wounded.

Why can’t you be happy? they ask with a pitying glance.

You still can’t answer. You’re too busy trying to staunch the blood oozing from your hands.

So, you look away.

You look toward the horizon. You see our charred, shattered world and smother your words with silence.

You wait for the question to pass because it will.

How can they be happy in the ruins?

Because they fanned the flames.

DISABILITY ACTS, founded in 2018, is an all volunteer-run magazine — run by disabled people, featuring disabled writers, who write about disabled life, literature, and more. Please support DISABILITY ACTS. Even one dollar helps. All money goes to paying our writers. You can see updates about how much money we have raised on our Submissions page.

Happy was originally published in Disability Acts on Medium, where people are continuing the conversation by highlighting and responding to this story.

One day when my son was walking home from school, he uncharacteristically decided to stray from his usual route home. Perhaps, he wanted to shave off some time of his already short commute from his elementary school to our townhouse. He cut through one of the townhouse complex’s many courtyards and passed a storm drain. He saw a set of eyes peering out at him. As he approached, he heard the mewling cries of a cat trapped in the deep drain.

He saw the cat before he heard it, noticing its eyes glowing from the small space that allowed the water to get in. He saw the cat despite being in a hurry to get home to get ready for swim team practice, the reason behind his quest for a shorter way home. He saw the cat and immediately all other concerns melted away, and he was determined to see the cat rescued, however long it might take. We tried to coax the cat out with bits of meat and calling softly to it, which didn’t work. So finally, finally called animal control to come and rescue the poor, trapped animal.

The cat was fine. My son was relieved, and I wondered at my child’s ability to notice the things that no one else does.

My son has ADHD. ADHD is not really about having a deficit of attention, but instead an overabundance of attention and an inability to decide — prioritize — where all that attention should be directed to. People with ADHD are also not great at pretending to pay attention, either unable to sit still or faces registering that the mind is clearly elsewhere. People with ADHD do not do boredom silently and calmly. People with ADHD also resist being told at any point what to pay attention to.

I wondered at my child’s ability to notice the things that no one else does.

I should say that I have ADHD as well, diagnosed as an adult, after my son received his diagnosis. The more I read, the more I saw myself in the descriptions of ADHD symptoms and presentations. I was a space-cadet, often completely zoning out during class or dinner or even in the middle of a conversation as my mind pulled me away from what I should have been paying attention to, towards something, anything more interesting, or even just different and new.

My son, on the other hand, has always managed to focus on the smallest, most seemingly unimportant thing. We were walking through the mall, and he stopped me to point out a fake falcon way up on the rafters that I didn’t even know existed. And then, on the next beam, an even smaller rubber duckie.

ADHD is not really about having a deficit of attention, but instead an overabundance of attention.

When he was very young, we would take him to zoos, and he would notice the insects wandering around on the ground instead of the real, live animals immediately and most obviously in front of him. When we watch TV shows, he notes production values and small actions, despite what might be showier performances and features.

Kids generally love hypotheticals, and my son loves “what if” scenarios and trying to figure out if something in history was changed what the impact would have been. Often, I’ll admit, I am only half-listening to his ramblings, but any parents whose child is prone to telling stories of any kind will understand. Parenting has provided a particular challenge for me and my ADHD, struggling to pay attention or at least look like I’m paying attention to my children’s ramblings. During one of these hypothetical scenarios, he stopped and asked me if this particular scenario had played out, if the USA would still have the penny.

This wasn’t entirely as random a question as it might first seem. Recently, Canada stopped producing the penny. All prices are rounded up or down to the nearest five or zero. My son had long been fascinated by the decision by the Canadian government to get rid of this small, copper coin. And in the hypothetical he was working through, Canada and the USA were the same country or much more similar than they actually are. In his scenario, the USA lost the Revolutionary War. He wasn’t attuned to the legacy of slavery or systems of government or anything large, but instead he paid attention to the status of the penny.

I remembered that sometimes asking the questions about the small, seemingly unimportant things can have the biggest, most important impact.

I was taken aback by the question and almost dismissed his question as inconsequential or irrelevant. But I stopped myself. I remembered that sometimes asking the questions about the small, seemingly unimportant things can have the biggest, most important impact.

In my son’s hypothetical, it probably wouldn’t matter. But what if it did? What if he was the only one who thought to even ask the question?

We need people to notice small things. We need people to be drawn to the elements that no one else notices because they have been conditioned not to. Because of his ADHD, he will always struggle with being able to differentiate between what is and isn’t “important” according to whatever standards the situation typically dictates. But, because of his ADHD, he’ll be able to see things others miss. Because of his ADHD, he can see trapped cats and fake birds and small bugs and wonder about the status of the penny.

Because of his ADHD, I don’t know what he’ll discover, so I don’t want to stop him before we all find out.

DISABILITY ACTS, founded in 2018, is an all volunteer-run magazine — run by disabled people, featuring disabled writers, who write about disabled life, literature, and more. Please support DISABILITY ACTS. Even one dollar helps. All money goes to paying our writers. You can see updates about how much money we have raised on our Submissions page.

Small, Unimportant Things was originally published in Disability Acts on Medium, where people are continuing the conversation by highlighting and responding to this story.

How much your life is worth?

In an emergency, is your life worth saving? Or are you already too broken?

These sorts of questions are bioethicists’ bread and butter, and they are about to become increasingly acute as the wave of the COVID-19 pandemic breaks in full force across the United States, and we face the kinds of crises, such as ventilator shortages, that have contributed to killing thousands in Italy.

I’m an expert on social ethics and health risks, so let me be clear: the ways our social and medical systems currently pose these questions have immediate and deadly consequences. This is especially true for disabled people, whose lives are often deprioritized even more than usual when life-sustaining resources become scarce. We’re trained to see disabled and elderly people as acceptable casualties of disasters so that we can accept the use of scarce resources to ensure the survival of the young, the abled, and the healthy. We make these judgments even in non-crisis situations — consider, for example, the “Quality-Adjusted Life Year,” or QALY, which assigns a monetary value to a year of life and deducts value for illness or disability and is widely used to determine the allocation of medical funding. The COVID-19 pandemic will only exacerbate matters.

What I’ve said isn’t speculation. Recent ventilator allocation guidelines from the University of Washington medical system define the “greatest good” as “maximizing…healthy, long-term survival…weighting the survival of young otherwise healthy patients more heavily than that of older, chronically debilitated patients.” These guidelines have explicitly and unambiguously judged the lives of young, able-bodied people to be worth more and to contribute more to the “greatest good” than those of disabled, ill, and elderly people.

Nor is this stance on ventilator allocation new to the time of COVID-19. As Ari Ne’eman has pointed out, these sorts of ventilator allocation guidelines have existed for years: New York State’s 2015 guidelines, for example, permitted withdrawing ventilators from chronic users if the users were admitted to a hospital during a ventilator shortage.

But think about the ethics of such guidelines: most of us would be, rightly, appalled if we killed people to give their internal organs to others. Why does it become less appalling to take away the life-sustaining breathing apparatus of a living person just because it’s outside their body?

Here’s the thing: lives are valuable, period. They’re valuable in and of themselves. If we become accustomed to the idea that some people’s deaths are “acceptable losses,” then we lose our ability to see a world in which no preventable deaths are acceptable.

If we become accustomed to the idea that some people’s deaths are “acceptable losses,” then we lose our ability to see a world in which no preventable deaths are acceptable.

The question we seem to be asking now is “who must die so that others may live?” But that’s the wrong question. We should instead be asking, “What kind of resources do we need so that we aren’t tempted to value some lives above others?”

Resisting the temptation to valuate lives according to perceived utility isn’t easy. The world we live in has conditioned us to do this in myriad ways, and ingrained habits are persistent. As I write, I’m constantly tempted to offer utilitarian rationales for the value of disabled lives — to point out, for instance, that disabled people and communities often have critical knowledge for surviving all sorts of disasters, something that Congresswoman Ayanna Pressley recognized recently on her Twitter feed.

But these arguments actually undermine my point: people’s lives matter regardless of what they do or do not produce, regardless of how useful they may or may not seem to be in any given moment.

Disabled lives are no less valuable than any others. Disabled people deserve access to medical resources, scarce ones included. To affirm anything less is to countenance a system in which ranking the value of human lives is acceptable. Societies with such systems have always turned out badly.

To be sure, affirming my point won’t in and of itself solve the very real shortages of ventilators and other lifesaving treatments. There are not enough of them during this pandemic. The U.S. government has failed to prepare for what it knew was coming, and so when the wave breaks we will not be poised to stay afloat. People have died. More people will.

We must not, however, become resigned to deaths that should have been avoided. We must instead generate the collective will necessary to build a world in which it is actually possible to prevent these deaths. Every triage decision must point towards a duty to do better in preparation for the next pandemic.

We must not, however, become resigned to deaths that should have been avoided.

We must stop treating this scarcity of resources as an unalterable given. We must instead demand that our federal and state governments order the manufacturers of ventilators and protective equipment to massively increase production. Demand they relax restrictions on imported medical equipment. Demand that we train more medical personnel in the proper operation of this equipment as quickly as possible, and incentivize the training of many more physicians, nurses, and aides against future need. Demand that medical personnel and caregivers receive hazard pay.

Demand that our government, instead of bloviating about the “10/10” response the president believes he has mounted, immediately offer the kind of massive economic support necessary to radically expand our diagnostic capacity and enable as many people as possible to practice the kind of genuine social distancing that we know saves lives.

In my work on ethics, I draw on classical Jewish sources. In Jewish law, there is a concept called pikuach nefesh (saving an endangered life) which not only allows but requires one to break any other laws if doing so will save a life. Any laws, that is, save for three: those against murder, adultery, and idolatry.

Why idolatry? One way to understand idolatry is as the act of treating anything other than the image of God as though it were God’s image — or, conversely, treating the image of God as though it were anything else. And a human, so Scripture teaches, is the image of God.

In other words — you must not value profits, or reputation, or protocol, or some abstract idea of the “greatest good” above any living image of God. And no expression of the image of God is more or less worthy than any other.

Triage protocols created by artificial scarcities sacrifice disabled lives because doing so supposedly saves the lives of others. But these protocols — and those lawmakers who put them in place — are accepting that they must ultimately choose between two lives. They are wrong. Rather, the choice is between our current system that forces us to classify some lives as more valuable than others, and a revolutionary system that would make it materially possible to treat all lives as equally in the image of God.

To truly affirm the inherent value of a person, to understand that person as being in the image of God, entails an obligation to build a society in which no one person, and no class of persons, is an acceptable loss. It means treating artificially imposed scarcity as the murderous idolatry that it is.

It means saying that no person, no body, is too “broken” to be worth saving.

Rebecca J. Epstein-Levi is the Mellon Assistant Professor of Jewish Studies and Women’s and Gender Studies at Vanderbilt University. She’s an expert on Jewish sexual ethics, and is working on a book project on sex, risk, and rabbinic text, as well as a project on neurodivergent thinking and rabbinic text. In her copious free time, she enjoys cooking unnecessarily complicated meals and sharpening her overly large collection of kitchen knives.

DISABILITY ACTS, founded in 2018, is an all volunteer-run magazine — run by disabled people, featuring disabled writers, who write about disabled life, literature, and more. Please support DISABILITY ACTS. Even one dollar helps. All money goes to paying our writers. You can see updates about how much money we have raised on our Submissions page.

In the Time of Covid-19, Ventilators Are Scarce. How Do We Decide Who Gets Them? was originally published in Disability Acts on Medium, where people are continuing the conversation by highlighting and responding to this story.

I was 25. I was a little more than halfway through my graduate education. I was getting papers published, and I was enjoying being a teaching assistant at the large land-grant university. There was so much promise ahead of me, and I was just desperate for all of it. I was so desperate that I couldn’t get my head around everything I wanted to.

A visit to a campus doctor concerning unrelenting fatigue (my perpetual tell-tale sign, it turns out) turned to conversations about my mood, my eating habits, my attitudes towards others, and a whole gamut of topics that really didn’t make me feel like we were talking about anything medical. That was the first time a doctor used the word “depression” around me.

The doctor’s voice was very gentle: Y’know, you’re dealing with things that are normal for students who put themselves under great deals of stress. There’s a group here at the student health center who gets together to talk these things out. Here’s when they meet. It’s free, you should join them.

I don’t remember much else about that day. I think I was polite and thanked the doctor. I think I also left the building, started walking very fast, and then was RUNNING across the campus back to my building to sit in my workspace and close the door and hide.

I was well on my way to a Ph.D., and I had ambitions of being in one of the serious computational labs working on the big problems. I had the taste of the 600-student lecture hall, and frankly, I wasn’t intimidated by it; I could be an elite professor. Of course I was running from the suggestion that I was depressed. “Depressed” was a word that I couldn’t allowed to be connected with me.

“Depressed” was a word that I couldn’t allowed to be connected with me.

Except that, over the next five years, it became increasingly obvious that depressed was something that I was. The ebbs of motivation became more and more pronounced. I did land a postdoc in one of those serious computational labs, and I became increasingly miserable and increasingly nonproductive, so much so that the postdoc failed.

I got a faculty job immediately, and I discovered anew that I really enjoyed the time spent in front of students, and I threw myself into every opportunity to be in front of students, so much so that I frustrated myself. I was frustrated with the real limitations on my life and my inability to know everything about every student to help them learn better. I was frustrated with my colleagues because they refused to challenge those limitations at all — almost as if they had better things to do with their time, like sleep.

(That’s not a joke. That’s how I thought.)

The frustration boiled over into other aspects of my life, as I saw a very clear picture of how much could be done and how many roadblocks were in my way to doing it all. I became consumed with how much I was investing in work, and I became consumed with how much I was investing in all the other things that could make me look better at work, to the point where even the tiniest distraction from that investment threw me totally. And made me angry. And made me lash out.

And, ultimately, made me collapse into ugliness.

Everything associated with that faculty job was a new opportunity to run away from what was real. I had to address the fact that responsible adulthood didn’t just mean taking on a job title and all the work that came with that title. It meant recognizing that there were real limits to the work that I could do and recognizing how much damage trying to exceed those limits could do.

It meant, fully five years after hearing the word for the first time, dealing with the diagnosis “depression.”

Now, this is the part of the normal narrative where the person gets the help they need and everything is magically better ever after. And I did get the help I needed at that time. There was therapy. There was a medicine. The first medicine was awful and made me feel awful. I told the doctors. We adjusted quickly. The second medicine was far, far better.

I attacked the depression with the same vigor I attacked the new faculty job. I invested in taking the benefit from the medicine. I invested in changing my habits. I was even able to manage everything I was feeling well enough to go off the medication and still attack the realities of the disease. I was even kind of self-righteous about it. I’m better now. You look like you’re dealing with the same stuff as me. Have you thought about…

I attacked the depression with the same vigor I attacked the new faculty job.

I managed to stay off of antidepressants for fifteen years. I had symptoms of depression. I attacked them, sometimes in healthy ways (backing off overcommitment, recognizing external stressors and forgiving my reactions to them, sleep), sometimes in not-so-healthy ways (filling my life with doing things, working too hard to solve unsolvable problems, and resisting sleep).

The small issue with running from this thing, though, is that even as you run, it catches up with you.

I left the first faculty job I had as the school was on its third president in three years; I felt every measure of the instability that came with the place. I left the job to move to a four-year school in the exact teaching line I wanted to be in, with the exact breadth of responsibilities I craved. I also left that faculty job full of bitterness, not completely understanding all the people around me who wanted to help, not acknowledging the positive place they wanted to help me create.

I wasn’t really better. Attacking the depression with every ounce of energy that I had didn’t leave me much energy to pursue the benefits that better health would bring me. My goal was overcoming the mental illness, just like any other obstacle in my life.

It was a fool’s errand. It was “running” under a different name.

I left the second faculty job I had right ahead of a Christian fundamentalist takeover of the institution, complete with lifestyle agreements as conditions of employment, to move to a school more in theological line with what I wanted to accomplish in higher education. I also left that faculty job without fully coming to grips with my lack of control over others’ decisions. I still hadn’t sought support from those who could provide it. I was still full of frustration.

I left the third faculty job I had without much choice in the matter; the school ran out of money. That might have forced me to accept help and deal with my lack of control.

A two year respite in a temporary faculty line with very narrow obligations that very quickly turned into a second postdoc (and the postdoc on science teaching pedagogy that I’d always wanted but never thought I could have, no less) was a blessing in disguise. When I received the offer of a permanent position after that respite, I well and truly felt like I’d earned it.

But when I arrived, so many of the habits I had worked hard to manage returned with a vengeance — the overwork, the perpetual busyness, resisting support, and hiding away. It didn’t help that I was a couple of decades older than I was when I started. Rather than having the look of a bright new faculty member, I seemed tired and old. Building trust was difficult — trust in students, trust from students, trust from colleagues, and trust in colleagues — which drove me into trying to solve more on my own. The spirals were familiar. The crash was familiar. The need for medication to break patterns was familiar. The feeling of failure was entirely too familiar.

At a certain point, you need to step back from the narrative and look at the reality.

I was depressed nearly twenty-five years ago, outside of that student health clinic at Ohio State. I was depressed nearly twenty years ago, starting as faculty at Middle Georgia College. I needed treatment, both medicine and talk therapy, and I resisted that treatment for far too long.

Even after getting treatment, and weaning myself from that treatment, I have had moments of depression, tangibly, at all of the different stops that have made up my career.

After restarting treatment for depression at my current job, and initially responding positively to that treatment, I started to discover that many of those symptoms of depression were sticking around, even as I thought they should have been gone. My moods were managed well, and I never got too high or too low. But fatigue was ever-present, and repetitive habits without productivity — refreshing email or Twitter streams repeatedly, for example — became a pattern I recognized and couldn’t break.

I started to come to the conclusion that the thing that was supposed to be going away wasn’t, and something larger was happening. And that meant going back to the doctor’s office.

Having the right practitioner helps. The first doctor I saw in Greeneville was always so hasty in dealing with me — I found myself taking an argumentative posture with him just to make sure he heard me and was addressing my needs. I realized there was a problem when I was more exhausted leaving a doctor’s visit than I was going in.

A change to a physician’s assistant helped me a great deal. Discussions with him were never stressful. They were always a real give-and-take, and I always left feeling heard. When I came to the realization that my depression wasn’t going away despite taking antidepressants, he was in position to listen, take notes, and make a suggestion. He wondered if I had ever heard of dysthymia.

I had, through a family member who had dealt with the same kind of symptoms and the same kind of stubbornness. But I’d never investigated the symptoms seriously, and I’d never looked up information on this thing we now call persistent depressive disorder. The “persistent” reference made a whole lot of sense, though, because however this thing expressed itself, it was incredibly persistent. It had been persistent for a very long time.

It was a very specific passage from NAMI’s description of dysthymia that served as a hammer to the head:

Dysthymia often has an early and subtle onset during childhood, adolescence or early adulthood. However, it can be challenging to detect because its less severe and lingering nature can make the condition feel “normal” for that person.

Also making it a challenge to diagnose is the fact that about 75% of people with dysthymia will also experience a major depressive episode. This is referred to as “double depression.” After the major episode ends, most people will return to their usual dysthymia symptoms and feelings, rather than feel symptom-free.

I cannot begin to describe what a thunderbolt the phrase “double depression” was for me. I had a sudden recognition that the antidepressant was working. Mood crashes that I’d experienced as part of my depression in the past weren’t happening with regularity. They weren’t causing me to spiral as they once did. And yet I was still feeling symptoms of depression. This knowledge gave me all kinds of new appreciation of what was happening to my head. It helped me recognize that many of the sensations that I’d associated with the defeat of depression weren’t going to just go away. A more aggressive attack that would be necessary to deal with it.

That’s hardly good news but I felt relief. Now, it was of utmost importance to treat the persistent disease.

I got prescribed a mild antipsychotic. That’s hardly good news either. But the denial of the limits to my energy and capacity to do work had elements of psychosis — not difficulty recognizing the difference between the real world and a classic fantasy world — but the inability to see the difference between an overburdened workload and a workload I could set up for myself to handle fairly. As I look back, I found I’d gotten very good at lying to myself without the slightest of intention. I needed a pattern-breaker to help me recognize the differences between fair and unfair expectations, to eliminate what Matt Reed once called the “hollow yes” from my life.

It’s been a couple of months. It’s not been easy. The initial dosage of the medicine came with substantial side effects, including akathisia — an inability to be comfortable sitting still and a feeling of restlessness. My sleep patterns still haven’t entirely recovered, either. But the pattern-breaking was immediate with positive effects. The medicine adjustment substantially shifted my stress levels at work. I’ve been able to manage the shifts and continue to work forward.

I still recognize moments where the depression creeps in. I still have moments of debilitating burden. I’m emotionally dealing with the newfound reality that those moments will always show up. There’s no 100% recovery.

But I’m not running. And it’s a good start.

DISABILITY ACTS, founded in 2018, is an all volunteer-run magazine — run by disabled people, featuring disabled writers, who write about disabled life, literature, and more. Please support DISABILITY ACTS. Even one dollar helps. All money goes to paying our writers. You can see updates about how much money we have raised on our Submissions page.

What It Took For Me to Stop Running From Depression was originally published in Disability Acts on Medium, where people are continuing the conversation by highlighting and responding to this story.

For as long as I can remember Halloween, I have loved it. Consistently. Faithfully. Deeply.

Halloween was often my favorite holiday, and it remains so. It was easier than the bigger holidays like Thanksgiving and Christmas, which required me to be shuttled back in forth between my divorced parents. Half a day with only family, half a day with another, always waiting for the tension to boil over. Always waiting for my biological dad to find a way to let me know that I ruined yet another holiday simply because I missed my mom.

I dreaded both Thanksgiving and Christmas. I never knew how either would turn out but I was always waiting for something to go wrong. Often, something did. I was blamed. In some ways, I still dread both holidays, my mind and body primed and preparing for the worst.

Each year, I pined for Halloween.

Halloween was easier, so much easier, with its jack o’lanterns, black cats, ghosts, witches, skeletons, monsters, and all the other wonderfully creepy things. Teachers would decorate our classrooms with paper black cats and let us make construction paper jack o’lanterns. Sometimes, we even got to dress up in elementary school or have a party with candy, cupcakes, and two-liter Cokes.

I was fascinated by the scares and fear that the holiday brought.

When I was a kid, I loved the costumes and candy. I was mostly caught up in the fun of Halloween, even as I was fascinated by the scares and fear that the holiday brought. I loved figuring out what or who to dress up as, often pulling the costume together from what we already had at home.

When I was five or six, I was a princess with a long blue velvet shirt of my mom’s, a tiara and make-up. My mom tried to add a beauty mark to my cheek with eye liner, and I burst into tears. I had a particular vision of what kind of princess to be, which wasn’t the same as hers. She relented and wiped the mark from my face as I sobbed. I likely trick or treated with a tear-stained, red face. (I can’t quite remember.) An agitated princess instead of the beautiful one that I wanted to be.

Even better, some years, my mom would let me pick out a pattern for a costume. I would twirl the rack of Simplicity patterns to see what I could be. We would head to the big, beige metal cabinets and look for the number of our pattern. Sometimes, it was there. Other times, it wasn’t, so I had to choose something else.

When we finally found the pattern, we would pick out the fabric to create it. She would figure out how many yards we needed, and then a nice lady would cut the fabric for us. She was always a nice lady. Then, my mom would sew it in those hours not dedicated to work, making meals, cajoling me (and later my sisters) to do homework, or getting everyone ready for bed.

Stitch by stitch on an old sewing machine, in the stolen moments of time, she would make me a costume that I knew I would love. I would wear it with pride, knowing that it was made just for me. It was something that was truly mine only.

I loved trick or treating in my costume. I loved walking through neighborhoods that weren’t our own. The neighborhoods with houses, rather than trailers, with neatly trimmed grass lawns and concrete driveways rather than a sandy road that looped our trailer park and the sparse grass that popped up around it. These neighborhoods had the name brand treats. They had all of the good candy because they could afford it.

Of course, I loved getting candy and filling a plastic bag with treats while keeping my fingers crossed that some houses would be passing out my favorites, Reese’s Cups or Snickers. I didn’t love waiting for my mom to go through my bag of candy at the end of the night. She feared that there might be razor blades in some of the pieces of candy or something else that could harm me. Candy held the potential for horror, so my mom had to assure herself that it was safe.

Candy held the potential for horror, so my mom had to assure herself that it was safe.

After her thorough perusal of my bag, I would hunt for the candy that I liked best and eat it immediately. I didn’t want to save my Reese’s for later. I wanted to get ahead of my stepdad who would eat the candy while I went to sleep. He had a habit of eating any sweet treats in the house, so we would hide the treats we wanted to eat in places he wouldn’t look in the kitchen. It was the only way to keep them away from him. Otherwise, we would return home from school to find them gone. An almost empty bag of candy and disappointment awaiting our return.

But mostly, as a kid and later teenager, I loved Halloween because, for one night, you could be someone else. You could be a witch or a princess or Peter Pan or Dorothy or a pirate or a pirate princess or a clown (maybe not a clown…shudder). You could be anyone else. Anyone.

For one night, you didn’t have to be you. You could be someone better or worse. You could be someone scarier. You could someone braver. You could be a princess who saved herself or a witch with magic to protect herself from her foes.

A costume could make you into anyone except you. And I didn’t want to be me: a fragile girl who didn’t know when the abuse was coming from my biological dad but knew, with a dire certainty, that it always was. For one night, I could focus on costumes, candy, and fun. For one night, I could imagine a life beyond what I had, a life that maybe I wanted, no, needed, instead. I could imagine a different present (maybe even a future) and get candy too.

A costume could make you into anyone except you.

Halloween was that moment out of time that allowed me to be anyone but me. It wasn’t just fun. It was freedom. It was also survival.

Even as a girl, I could appreciate the honesty of Halloween. I could appreciate the very real brutality lurking underneath the playful horrors of Halloween. Its darkness spoke to me. It sounded an awful lot like truth. The truth can so often be cruel. The world is so often not a safe place. (Our homes aren’t either.)

Halloween offered up warnings to children about the world we inhabit, not directly but through fantasy. After all, witches aren’t friends of children in so many fairy tales. They would rather eat them. Skeletons aren’t just decorations to hang on classroom doors; they are the remains of human bodies. Ghosts aren’t friendly like Casper; they stalk and haunt us with vengeance and purpose. Monsters do more than frighten us. Black cats appear as the bearers of bad luck. If they show up, calamity follows.

Some shit is just scary.

Halloween gestures to all the terrible things that could happen to us. It’s a reckoning with how things can quickly go awry. It shows how some shit is just scary. It tells us we should be afraid. It tells us that nothing is all in good fun.

Halloween is about so much more than costumes, candy, and fun; it’s about the horrors of every day life.

Perhaps, this is why I still love Halloween. Its honesty about the darker side of life still speaks to me. I’m still drawn to the creepiness. (My kids tell people all the time “Mom likes creepy things.” They aren’t wrong.)

But, Halloween’s truth helped me survive.

And today, Halloween reminds me of that girl I used to be. It reminds me of her fear. It reminds me of her intimate knowledge that some shit is just scary and supposed safe places can be anything that safe. It reminds me how a costume was more than a costume for her. It reminds me that she could someone different than she was. It reminds how this was a respite for her, a temporary escape. Halloween let her imagine something more for herself than what she faced.

Now, Halloween reminds me that she survived. She no longer needs that costume. I no longer need a costume because I survived. I survived. I no longer need to become someone else. Instead, a costume is just a costume.

Halloween is becoming more fun than horror, though I still know — I still know — that things can go awry.

Happy Halloween.

DISABILITY ACTS, founded in 2018, is an all volunteer-run magazine — run by disabled people, featuring disabled writers, who write about disabled life, literature, and more. Please support DISABILITY ACTS. Even one dollar helps. All money goes to paying our writers. You can see updates about how much money we have raised on our Submissions page.

The Honesty of Halloween was originally published in Disability Acts on Medium, where people are continuing the conversation by highlighting and responding to this story.

I was already late when I landed in New York in the summer of 2007. LaGuardia was nothing more than a wash of noise and a glimpse of blue carpet as I hurried to a cab. In moments I was speeding toward Soho, fingering loose twenties in my pocket and hoping my hotel wouldn’t turn out to be a dive. Officially, I was in town for a seminar—five and a half days to meet with others in the historical profession. Off the record, I was in town to rediscover the kind of person I could be, to make some kind of claim on the concept of being well.

Depression and PTSD were my companions, entities born out of more than one experience of sexual assault. I was in my early thirties, toting around the heavy, broken mental suitcase in which I’d once stuffed all my secrets, and my skin buzzed with the mantra of cope.

I was in town to rediscover the kind of person I could be.

My breakdown, three years earlier, had been unglamorous — a paralyzed hour in my car at a strip mall in Minneapolis, staring at a Kinko’s I could not enter, hands on a steering wheel I could not use. I was frozen by grief, by a lifetime’s supply of questions gone unanswered. I was — as one therapist suggested — finally the adult I’d wanted to turn to when I was younger. Every fear and heartache had come rushing out.

I was displaced when my breakdown demanded my wholesale attention — on a research trip, five hours from the college town where I’d made my home, in a country that was not that of my birth. I had displaced myself after college, emigrating to the United States for graduate school. I had displaced myself in my research, choosing to study states outside those in which I lived.

Displacement was my default, my choice when I had no idea how to continue in the place I was in. New York was the latest expression of this habit. I fixed my sights on that city with a restlessness that I can now see was desperation. I wanted to go somewhere alone to prove that I could. I wanted to exist somewhere unfamiliar with the hope that wellness might be somewhere I could find on a map.

New York and I had a history. Fifteen years earlier, I’d washed up at Port Authority, a foreign-exchange student with an overstuffed backpack and too little money. The address of a hostel was in my pocket. My friends promised to meet me on the Upper West Side. I took a cab to the hostel, found it filled to capacity with German tourists, left notes for my friends, and called every other cheap place to stay that my guidebook could offer.

Everywhere (predictably) was packed to the gills, and sitting on the edge of a planter, two paces from a call box, knowing no one and having no plans, the New York geography of NYPD Blue (my only internal guide to the city) rose up to engulf me. I was convinced that at 10 a.m. I was sure to be raped.

I wanted to exist somewhere unfamiliar with the hope that wellness might be somewhere I could find on a map.

My fear didn’t come to pass. After making more calls, I found a room in student lodgings close to Columbia University that cost $104 per night. It was far beyond my budget, but I saw no alternative. The on-site cafeteria was closed; I was utterly lost.

I had no appetite for exploration; gravity seemed to be pulling at my feet with twice its usual power. I ate Wheat Thins and canned pears (staples pulled from my backpack), drank bottled water and watched TV while sirens blared too often and close outside. I slept in my clothes because that spoke of safety, returned my key next morning, and stared incredulously when the desk clerk counted $104 back into my hand, mysteriously returning my money to me in full.

“Was there something else?” she asked when I stared a little longer.

I shook my head and fled the building before either of us could find out if she’d made a mistake.

I was as afraid of good fortune as bad.

But in the summer of 2007 I was no longer that student. This time my hotel had been booked weeks in advance. It was clean, if spartan, with a bed-frame that tore at my shins when I passed from closet to bathroom. I discarded my weighty bags in a heap on the floor, found another cab, and made it to my seminar’s opening reception before it was over. I smiled and made small talk, listened hard and acted as though the world would meet me halfway for the effort in the spirit of faking it until I was sure that I was the equal of anyone in the room.

But I was still the girl who’d sat on a planter years before, who’d been lost in the city once, and it was that girl who’d paid attention to the route from hotel to reception space, convinced that safety was built from vigilance. When the time came for my peers and I to make our way home, I knew the way and led others with me. I wanted to believe I was in my element.

Displacement worked its temporary magic, and I found things to love. The utter desertion of Broadway at 8 a.m. was a quiet I hadn’t hoped for. The streets were twice as wide as they seemed by night. I picked my way across the grid system from hotel to campus, a dozen blocks north and west in any combination.

By Wednesday, I had found the route that took me past the greatest number of stores that sold flowers. I watched as shopkeepers hosed down the sidewalk each morning; stopped at the drugstore, bought water one day, a notebook the next; picked my sidewalk by virtue of sunshine or shade; and watched the gray of old brick disappear beneath scaffolding that emerged as a speckled brown-blue on the other side.

There was, for a time, peace to be had in discovering no one saw me as anything but whole. There was the possibility of reinvention at crosswalks, in bookstores, and at the hole-in-the-wall restaurant where I drank a mojito. People asked where I was from, dollar bills changing hands and stories following. The questions were meant sincerely.

There was the possibility of reinvention at crosswalks, in bookstores, and at the hole-in-the-wall restaurant where I drank a mojito.

But transparency was its usual struggle. That the people to whom I spoke were strangers I’d never see again didn’t reassure my wariest self — personal details were surely fodder for cruelty. I had learned as much years before, groped on a trans-Atlantic flight under cover of darkness and forced to spend the next hour’s breakfast weathering pointed questions about my life by the man responsible for the assault.

In my shock and disarray and certainty that I was trapped (the flight was fully booked; I’d sat awake through the night rather than call a flight attendant after he touched me, certain I wouldn’t be believed), I had answered his queries, and regretted doing so, wondering for weeks if he might show up at my door. Given that — given my impulse to protect myself and my fear that I could not — it was with trepidation that I said anything or shared a few words and offered a smile.

Wednesday, my colleagues and I took the subway uptown — a visit to the Historical Society and an afternoon in the museum. I hated the subway long before we were introduced. New York was manageable above ground, with its heat and noise and distant sky, but below was a different matter, a closing in of air and space where an unfamiliar darkness was pushed back with weak electric bulbs.

I thought of other trains — of the London Underground and the perfect diction of the recorded voice that urged me to mind the gap and the carriages, and of the Chicago El clattering along aging tracks, offering glimpses of sky at every downtown turn.

But in New York everything was hot and stuffy; the trains were crowded. Beauty and comfort were laughable goals. I became, like everyone else, an unintended locus for touch — elbows, back, shoulders, and knees. There were accidental intimate brushes of fingertips and messenger bags.

By 81st Street, I was ready to crawl out of my skin, jittery and shaken by a wash of contact I didn’t want and had long since rejected when given the choice.

Unsafe, unsafe, ran the mantra in my head. I was triggered.

In that particular city, no one would have noticed if I’d acted strangely, yet acknowledging my discomfort never seemed an option. My feelings split; I was outwardly engaged, steel-bright, and certain, but only because I had buried my panic. It rumbled beneath the architecture I showed to others, busily transporting discomfort, worry, and fatigue away from my face. I held it below-ground with the willful cadence of my breath.

The only part of myself that I dared let run free was my intellect.

That pretense required fuel, and for the last few days in the city, I positioned myself by the window of my hotel room at night, picking up one, then another of the unsecured wireless signals in my neighborhood. Email substituted for physical comfort, for knowable places, for my tiny home with a lock sunk meaningfully into the front door.

The only part of myself that I dared let run free was my intellect. It was easier to think of the global ramifications of historical argument than to think of my physical self, six floors up in a hotel a thousand miles from home.

Saturday came. I walked with a friend through the hubbub of Times Square. Should the ancient prophecies of a dozen religions come true, I thought, this would be my particular hell — lights and crowds and the stink of car exhaust, the pull and push of too-hot bodies, the driftwood wreck of families beached on a shore of asphalt, and cameras at the ready to prove they were there.

I felt no camaraderie with other out-of-towners in that place, only dislocation and a longing for space enough to speak a thought out loud and have it heard, resenting that the best communication was an elbow in the side or the wave of a hand. My friend and I wove through the crowd, headed to a neighborhood bar five blocks away, a city oasis with white walls and vases filled with orchids. Here at last I could breathe, speak, and laugh politely as though I understood this city. My mimosa rested on a bright pink coaster.

But I fled without remorse the next morning, hoping my sunglasses hid my relief from the man who drove my cab. I checked in early for my flight, glad to let someone else manage my luggage, and browsed the airport bookstore, choosing a book at random because I recognized the name of a familiar author. The book was my ticket to social solitude, an acceptable act of hiding. When the plane took off, I watched the horizon only so that my stomach would hold steady and dozed fitfully as we headed toward the Midwest.

Later that day on my second flight, at the height of a hop-scotch jump between cities, I looked out the window and saw a waiting expanse of green. Below me stretched June fields of young corn and soybeans, an occasional spread of timber, back roads glinting a dusty brown-gold. There was sunlight, and space, and I hung, suspended, Clair de Lune playing softly on my headphones, my book half-read in my lap.

I felt a humming in my bones, a wonder at the ordinary beauty of it all.

What if I stayed put? What if I stopped believing that salvation was found in leaving and looked for something instead in my returning home?

Living in one place — in a single, physical location at a single point in time — ran spectacularly up against the dictates of my PTSD. Triggers could conjure flashbacks, folding time and place so that every scrap of evidence provided by my senses pushed me back into my twenties again, or to in Minneapolis, or Milwaukee, or the UK.

I would know the year by the quality of the sunlight, or the scent of newly made bread, the texture of fabric against my fingertips, and the pressure of a breeze dancing over my face. It could be winter, and I would think it was spring. It could be ninety degrees, and I would shiver. And when the flashback passed, I would gasp and collapse. I would want to sit if I were standing and lie down if I sat.

The impossibility of life lived between then and now sent me looking for a therapist and trauma-informed care. I found someone an hour’s drive away who introduced me to EMDR — eye movement desensitization and reprocessing, a treatment for trauma that coaxed both halves of the brain to work in tandem to resolve the memories locked up in body and mind.

Piece by difficult piece, I reclaimed my mind from its self-protective impulses.

Week after week I rooted myself in a solid grey armchair in front of a strip of small bulbs and watched lights run right to left and left to right. I called up polaroid snapshots of my very worst memories and then, as my eyes moved back and forth, let go of the images and waited for my body to lead. I twitched and jerked; I kicked a leg, then the other. I felt burning pressure in my elbows, a pain in my stomach, though sometimes I’d feel nothing at all. Piece by difficult piece, I reclaimed my mind from its self-protective impulses, tricks and tactics that had helped me to survive but which now were maladapted to the life I lived.

I was no longer in danger — a mantra I repeated to myself day after day.

I was no longer in danger. I came, very slowly, to grasp that fact.

I bought a house. I had never liked dirt, but, as I chipped away at my memories, I planted bulbs. I set a wine-red clematis into the ground by the steps of my porch and scraped back years of mulch to put black-eyed susans in the ground. I hung twists of fir and pine and berries on the front door every winter, and I tried to coax forsythia to bloom in the spring. I swept my steps, filled planters with gardenias, and trimmed back the raggedy hedges at the north and south of my lot.

The maple in my front yard turned to flame every fall without input from me, and I felt myself shifting to stand amid the living things around me instead of the grasping memories of my past. On the occasions when my history still demanded I pay it attention, I could step inside, lock the windows, and bolt the front door. But I had given each of my friends a set of keys.

I changed therapists before I next returned to New York, switching out the deeply physical practice of one style of EMDR for another, gentler approach. I flew into LaGuardia and once more took a cab, this time to a better hotel in the heart of midtown.

In the years since I’d last visited, I’d learned the art of packing light, and it took mere moments to hang my dresses in the hotel-room closet and set my make-up by the sink. I pulled on a different jacket — the weather was unseasonably warm — and slung my cross-body purse over my shoulder. It held my wallet, my phone, and a travel-sized packet of Kleenex.

I had only a weekend in town that January, and conference panels to attend, but I plunged outside to find a good cup of coffee and discovered I wasn’t afraid.

Over the next few days, I walked the perimeter of Central Park up to the Met. I ate a hazelnut tart in the basement of a museum dedicated to German and Austrian art, and drank a soda made with cucumber that was delightfully weird. I walked through a rainstorm to find a tea shop with a friend, and we both dripped quietly over our egg sandwiches and smoky Himalayan tea, laughing at our bedraggled state. Nearby, a six-year-old was holding court over a birthday party. Beside us sat two old women, chatting companionably in a language I didn’t know.

I plunged outside to find a good cup of coffee and discovered I wasn’t afraid.

I wasn’t displaced — I was growing to know my own center, the direction of home, and the difference between running and stepping away. I still carried trauma, but the weight of the memories hitched up on my shoulder or tucked snug into the crook of my arm were not as heavy as they had once been. I was not new, nor reinvented, but I’d stopped hoping that this city — that any city — could save me.

I finally loved New York. I finally found me.

To support DISABILITY ACTS, a magazine for disabled writers to write about disability experiences, leave us a tip. Even one dollar helps. All money goes to paying our writers. To see how much money we have raised, visit our Submission page.

New York was originally published in Disability Acts on Medium, where people are continuing the conversation by highlighting and responding to this story.

What kind of driver would I be on my ADHD medication?

I’m unreasonably nervous; I’ve been driving for almost 25 years — more than half my life now — and yet, here I sat in my driveway, focusing on my breath. It was the first day of driving while on my ADHD medication.

I am 41-years-old. I have a PhD, a husband, two kids, a career, a driver license, and a car that I have driven since 2005, one I’m intimately familiar with. My husband and I drove that car from Edmonton to southern California, and, then, all over SoCal while we lived there. I commuted to my job, 45 minutes each way if traffic was good, along the 410. I drove it from Florida to Kentucky, and Kentucky to Virginia, where we live now.

I did all of this driving — thousands of miles — without knowing I had ADHD.

I learned how to drive even though I was anxious to the point of almost paralysis about driving.

I learned how to drive on the mean, unforgiving Montreal streets without knowing I had ADHD. Montreal drivers are known for being really, really aggressive. We’re late to everything, so we drive really fast. We don’t use our turn signals to change lanes. (Signaling appears as a sign of weakness and simply indicates to the other drivers that they’ve committed the cardinal sin of leaving too much room between themselves and the car in front of them.) We can’t be trusted to drive with caution; because of that, it’s the one of the only places where you still can’t turn right on a red light.

Oh, and there’s winter.

I learned how to drive a stick shift in Montreal without knowing I had ADHD. I learned how to drive in winter, real winter, during snow storms, ice storms, deep freezes, thunder, and lightning through streets that are well-known for their potholes that never get fixed. I learned how to drive even though I was anxious to the point of almost paralysis about driving.

When I was much younger, my brother and I used to be allowed to start the cars in winter to warm them up. One time, the car was in first when my brother started it. It lurched forward and promptly stalled, but in my mind, it had almost run into our house. I figured that driving was too much for me.

That anxiety, that fixation, I would much later figure out was a part of my ADHD. But back then, I assumed I was just overly sensitive and emotional.

I learned to drive without knowing I had ADHD, but firmly aware of my complete lack of directional sense. This was a time before GPS in cars, before smartphones. When Montreal closed all of its roads in the summer for construction and didn’t put up enough detour signs to help you navigate, you were on your own. I knew the water was to my south. (I was always on the south-west part of the island; that’s where all the Anglophones lived.) If I could find where the water was, then I could head west. If I could smell Seagram’s distilling their wares, then I knew I was headed in the right direction and could make it home.

Moving around so much and my lack of sense of direction meant that driving in unfamiliar places triggered a strong anxiety reaction. One time, I was driving in Lexington, Kentucky, after having only lived there a few months, trying to get home with my son in the back seat. I was following Google Maps, but unbeknownst to all of us, the roads around us where closing because of a parade. I kept hitting closed street after closed street, and the re-directs kept taking me to more closed streets. I couldn’t even go back the way I came. I cried on the phone to my husband, stuck on a one-way between two closed streets before finally approaching a police officer, who gave me directions to take the long way home.

Moving around so much and my lack of sense of direction meant that driving in unfamiliar places triggered a strong anxiety reaction.

When we first moved to Kentucky, we learned that we couldn’t exchange our Canadian driver licenses for Kentucky ones, so we had to do the written exam, wait a month, and then take a driver’s test. I almost failed my driver’s test at age thirty-something because of all the bad habits you develop as you drive and because I still can’t parallel park. My anxiety takes over — here I am, a woman, stereotypically unable to parallel park — and everyone is watching and waiting and judging. And yet, I passed.

My anxiety around driving was because of my ADHD. But I didn’t know that yet.

There is one thing about driving that I loved — driving on busy major highways. When I would drive in this environment, I would always know where I was going (straight), so I didn’t have to actively worry about it, though I did have to worry about everything else — other drivers, speed limits, lane changes, directions, if I would be late. My anxiety, what I now know is my ADHD, which was always looking for things to worry about, would be completely occupied on a highway.

By some cosmic gift, I had taken a defensive driving course when I was 16, so I am always on alert when I drive. That, coupled with having to learn to read body language to anticipate lane changes from driving in Montreal — I watch drivers to see if they are on their phones, if they are looking over their shoulders to change lanes—means that I can predict with pinpoint accuracy when a driver is either going to drift or cut me off. Worrying about all of these things while I highway drive means that, for the duration of any trip, I am free to actually think, unimpeded by my ever-present anxiety that was busy trying to keep us alive in the car.

It was a small gift that I didn’t want to lose.

In spite, or maybe because, of my anxiety disorder caused by what I now know is my ADHD, I was a really good driver. I am a really good driver. And in these moments on the almost-open road, I could reach my thoughts in a way I couldn’t ordinarily. My mind would wander productively rather than spiraling into a pit of…not despair, but of desperation, trying to climb back from the worst-case scenarios that produced themselves in my head. The only other place that had ever happened was when I was swimming; I had to keep track of the sets, the intervals, the other swimmers around me, what my body was doing, and my mind would and could productively wander. Swimming by myself, without having to worry about anything other than myself, did not produce the same results.

When I was diagnosed with ADHD, it was a revelation to me, and the medication was a godsend.

But driving still did. When I was diagnosed with ADHD, it was a revelation to me, and the medication was a godsend. I could finally get through a simple to-do list that had previously felt insurmountable. One morning, just after taking my meds, I watched in my mind’s eye as my to-do list literally snapped into place, prioritized and everything, which is something that had never happened to me before. I took my pills before coaching at a swim meet, and I didn’t miss nearly as many races. I didn’t freak out and spiral when I did inevitably miss one of my swimmer’s swims because of the noise and chaos that comes from coaching twenty kids, who were nine and ten-year-olds, at an event with hundreds of other swimmers.

I was learning how to live with my ADHD under control. I was re-learning how to write, how to read, how to be a co-worker, how to coach, how to parent, how to spouse, and how to everything. I had never done any of these things without my ADHD being unrecognized and out-of-control. Each thing I re-learned how to do was small celebration — it doesn’t have to be so hard!

But I resisted taking the medication before commuting to work in the morning. Surely I wasn’t wasting valuable productivity time in the one-and-a-half-hour commute. Plus, if I took my pill when I got to work, there was no risk of it wearing off before the end of the day. Heck, the medicine might even last into family time in the evening! And besides, my anxiety was abating, enough that I could focus, but I was concerned: did taking the medication mean that my mind also could no longer wander — something I counted on to make me a better driver?

What kind of driver would I be on my ADHD medication?

The first time I took my medication before driving, my destination was an unfamiliar place where there would be lots of traffic and potential for wrong turns or getting stuck in the wrong lane. I did inevitably get lost, but I didn’t panic, cry, or spiral. I just took a deep breath and kept going. This may seem like something ordinary, but for me it was extraordinary, driving without descending into hysterics.

And yet, I kept putting off taking the pills before my daily commute to work. Until one day, I didn’t. It was a minor, albeit comical, disaster. Instead of focusing on the drive and letting my mind wander, I was focusing on what my mind was doing and I lost track of my driving. For the first time in my life, I was a distracted driver, not because of technology or my ADHD, but instead by my newfound ability to focus.

There were no accidents, no speeding tickets, and no missed turns, just a longer than an hour battle within my head about what to pay attention to. I’ve never had that problem before. It’s a new one that I am still trying to figure out.

I am forty-one years old, I have adult ADHD, and I still have a lot to learn. Or, in this case, re-learn. My life activities pre-diagnosis, pre-medication, everything up to this point, have been performed in one way. This new, different way of being myself takes some getting used to.

DISABILITY ACTS, founded in 2018, is an all volunteer-run magazine — run by disabled people, featuring disabled writers, who write about disabled life, literature, and more. Please support DISABILITY ACTS. Even one dollar helps. All money goes to paying our writers. You can see updates about how much money we have raised on our Submissions page.

Learning to Drive Again on ADHD Medication was originally published in Disability Acts on Medium, where people are continuing the conversation by highlighting and responding to this story.

Read the second installment of Elizabeth Land Quant’s column, “Disabled Generations,” on parenting disabled kids as a mom with disabilities.

Stratum. noun. (plural: strata). A layer of material, naturally or artificially formed, often one of a number of parallel layers formed on one another.

My dad, a geologist, always gave me fossils, crystals, rocks, and shells for presents. My favorite was a silvery purple geode. Humble, gray, with brownish beige crusty layers on the outside, shimmery, lavender, and sparkly on the inside. Sitting on my white desk chair listening to my seventh-grade sorrows, Dad would hold the geode in his weathered hands, turning it slowly over to its rough side, his fingers finding and exploring each texture. Then he’d turn to its crystal beauty, smooth as glass, looking like just cracked ice, breaking into a tiny cavern of lavender crystals. This was his way of listening because for him, eye contact was too intimate, too intense.

Dad surrounded us with what he understood and loved.

I think my dad chose his profession, at least in part, because he had autism. He could spend hours, even days alone on an oil well, or studying maps in his office, perfectly content with the silence. Dad filled our house with his beloved objects: Nautilus shells took up space on book shelves, fossilized shark teeth with magnets glued on the back held up school papers on the fridge. A beautiful, orange, preserved piranha watched us from his perch on the mantle. Our home glowed with sun warmed rose quartz towers and clusters of purple amethyst. Dad surrounded us with what he understood and loved.

Home was my safe place. We lived on the prairie in the middle of North Dakota, in a house my parents had built made of brick and stone, providing impenetrable layers between me and the outside world. I used to pretend our home was Mont Saint Michel, the fortified French monastery, our hill the island, and Apple Creek the Atlantic Ocean. There, I felt protected.

School, however, was a different story.

“You’re far too ugly, dumb and weird for anyone to marry you,” my junior high counselor told me, “And you’ll never get into community college, so you’d better think of some way to hook a husband fast.” I moved slowly. I was clumsy. I was chronically ill. I constantly bumped into people because I kept my head down to avoid looking people in the eye. I was freckled, sick-looking skinny, glossy, shell pink, glasses too big for my face, my stringy brown hair singed from well-meaning Ogilvie home perms and partially matted down from head gear. I mumbled.

Also, I didn’t answer people because I didn’t understand their meaning.

My lips, called “fish lips” by even the gym teacher, were forever getting caught up in my braces, rubber bands, and the outer wires. Also, I didn’t answer people because I didn’t understand their meaning. Their expressions confused me. Were they joking? Sarcastic? At my expense? I was the perfect target in every aspect.

After I had related my woes to my dad, he held up the geode, saying the pretty stuff inside the geode was nice, but the best part was the outer layer, because it was strong and protective. I already knew the definition of a geode. It’s a multi-layered, roundish rock, with a hollow center that’s lined with minerals. Thousands, even millions of years ago, layers of rock slowly formed around a gas or air bubble, and mineral matter carried by ground water seeped in, creating beautiful crystals.

Dad pointed out the many outer layers, explaining that if one layer was damaged, the next layer kept the inner layers safe. These layers were so strong, that when the surrounding rock weathered away from erosion and weathering, the crystals inside the geode survived. Dad wasn’t comfortable talking about emotions, but he knew, in his own way, how to parent me. When I got older, I learned more about my dad and his own family, the layers of generations before them, and I finally began to understand myself.

The latin verb sterno, from which strata is derived, has its origins in the Greek word sternon, meaning “chest, breastbone, heart.”

I don’t know how many generations back autism and autoimmune disease go in my family, but I suspect it’s far. When my daughter was four years old, my dad saw her rocking back and forth behind the couch. “My little sister Mary used to do that also,” he said.

Dad rarely talked about Mary; she and my dad’s parents died in a house fire before I was born. He rarely talked about anyone in his family, to be honest, so I relied on family records and letters to piece together the strata of genes that contribute to who I am. I found references to nerve pain and to symptoms indicating auto-immune disease in letters that my family wrote to each other. I felt an instant connection to the physical pain they were in.

I also recognized autistic traits coming through in my relatives’ ways of communicating, their speech patterns, sensory issues and idiosyncrasies echoing what I saw in my own children and my autistic sister. With each box of old family letters, I found more clues that helped me fill in a family tree depicting a legacy of autoimmune disease and autism, and I was much better able to understand my dad and myself in the process.

I relied on family records and letters to piece together the strata of genes that contribute to who I am.

On March 11, 2016, I had a bad autoimmune flare. This one felt like a vise closing around my chest, constricting my breathing, while thin machetes sliced my head. Over and over. I had thrown up repeatedly, nothing left but dry heaving. My temperature was off, cold and sweltering, I retreated to the world under my soft, pink baby blanket, with the couch beneath me, and pillows supporting my throbbing sides.

I wanted to call my dad, but he was travelling that day. I worried about him being alone. He was on oxygen all the time now, years of inflammation from autoimmune disease made his breathing harder and harder. I kept imagining my dad’s Arkansas lake cabin, and my favorite calm and safe place on his porch.

Early in the morning before my kids would wake up, my dad and I would sip coffee and contemplate all kinds of ways to kill the squirrels that were harassing dad’s precious bird population. I would carry an old Hudson trading blanket with me from the bedroom out the door and swaddle myself with it. I’d play Willy Nelson, dad’s favorite singer, while we watched the birds.

Before southern humidity and heat would set in, I’d grab my pole off of the dock and fish for about two minutes before my line would break and I’d lose my lure and bobber. Dad knew my hands didn’t work right — arthritis and damaged nerves rendered them almost useless. He turned up as if he just knew, and without reprimand or disappointment in losing yet another of his lures, took the pole from my hands and handed me another while he fixed the line. I always was careful, though, not to fish around my dad’s geese that he fed every morning as he drank his morning coffee.

As I lay on the couch that day in March 2016 dreaming of dad and his lake home, my husband had stepped away from me to take a phone call. He came back, crying, and told me my father had just died at the Phoenix Airport from a head injury and some sort of heart attack. My next memory is riding in the ambulance, oxygen mask on.

The word stratum, singular for strata, comes from the past participle of the Latin verb sterno, which means “to lay out, to spread, to scatter.”

In the few years before my dad died, we talked every day. I would call, in tears, in rage, in frozen fear for my kids’ health problems, and for myself. I didn’t know how to process each new diagnosis, each new symptom. He, the scientist, would redirect me to find patterns in the blood work, in symptoms, in behavior, and how they related to each other.

After our daily talk, I would inevitably feel calmer and more able to focus on caring for my family. My dad was a place of safety for me because I knew that no matter when I called he would be the same: steady, calm, strong, and methodical. I see this now as one of the many gifts of his autism, which was reflected in the Arkansas cabin he built, a solid cement-block home on a large rocky, wooded point on Lake Hamilton, an area known for its crystals, fossils and rare geologic features.

My dad was a place of safety for me because I knew that no matter when I called he would be the same: steady, calm, strong, and methodical.

Dad kept adding onto his cabin until it was uniquely his, layering wood and rock over cement, fortifying each wall. Plaid couch and chairs, fish-shaped pillows, and Legos in a bin for the grandkids. He created this respite from the world, away from loud noises, loud people, too much eye contact, too much emotion, too much chaos. Every crystal, every geode, every mineral and fossil was carefully laid out on the shelves, in front of his favorite books. Books that not only covered his geological profession, but also philosophy, religion, history, psychology and the classics.

My father had Oliver Sack’s book, Gratitude, with him when he died. Even though his death was unexpected, his reading Sack’s reflections, leads me to believe that Dad was more aware of his own fate than I realized. He had turned down one corner in Sack’s small book of four essays. A picture of Oliver Sack’s table with rocks, fossils, metals, and minerals carefully arranged. Sacks wrote, “I am again surrounding myself, as I did when I was a boy, with metals and minerals, little emblems of Eternity.”

As my father had surrounded himself with layers of life, of history, of things that made him feel safe, I look around my own home and realize I’ve done the same. I’ve arranged my books like my father, by subject, from the dawn of time to the present. Two little preserved alligator heads are staring at me from their perch on a shelf. A purple amethyst sits next to a picture of Dad and me. My first cowboy boots surround pictures of my babies. The silvery purple geode leans on Shelley and Dickinson, gifts from my dad. I feel him with me, every time my fingers drift along the rough outer edges of the geode, every time I tell my kids that their uniqueness is the strongest layer they have.

I feel him with me, every time my fingers drift along the rough outer edges of the geode.

My dad lived a wonderful life letting beauty seep through his many protective layers, giving us all a path to follow. I often think about a quote that reminds me of Dad, from Lidia Yuknavitch’s Chronology of Water, “Help yourself prepare for a life. Recognize when there are no words for the pain, when there are no words for the joy, there are rocks.”

After my father died, we spread his ashes in his beloved Lake Hamilton. I own dad’s cabin now with my sister, who is so much like my dad — strong, methodical, autistic, and safe. We keep my dad’s cabin the way he arranged it, feeling every layer of his love. Our kids come down to stay with us and together we search the banks of the lake for rocks and crystals. I drag my fishing pole along the water’s edge, carefully avoiding the brush. One day, I will teach myself how to untangle my line. But for now, my sister wordlessly takes my pole, fixes it, and then hands it back. I throw the new line back in, ripples scattering Dad’s geese far up over our lake, the rocky shore solid at our feet.

DISABILITY ACTS, founded in 2018, is an all volunteer-run magazine — run by disabled people, featuring disabled writers, who write about disabled life, literature, and more. Please support DISABILITY ACTS. Even one dollar helps. All money goes to paying our writers. You can see updates about how much money we have raised on our Submissions page.

Our Strata was originally published in Disability Acts on Medium, where people are continuing the conversation by highlighting and responding to this story.