Understanding Pain (Part 1) – Before it had a Name
MThe first time I realized something was wrong with me, I was reading an essay about fear, terror, and dread.
It was 2016, my last year in an MFA program. I was sitting in a fiction theory class, holding a printed copy of “Initial Thoughts on the Horrific,” an essay I’d written about how stories use different shades of fear to move us. I’d spent weeks on it. I knew every turn of the argument. But when it was my turn to read aloud, the words wouldn’t stay still.
The lines blurred. Letters slid into each other. My classmates and professor were soft shapes at the edge of my vision. I stumbled over my own sentences, guessing at what I’d written, pretending this was just nerves or lack of sleep. The moment passed, the discussion moved on, and I did what a lot of people do the first time their body betrays them: I pretended it wasn’t happening.
At the end of the school year, at my program’s graduation reading, I read a story to a room of people I respected. Again, the page turned into static. Again, I faked it. If you’ve ever had a moment where your body suddenly feels untrustworthy, you know that quiet, private terror. One second, you’re a person who reads and writes for a living; the next, you’re a person hoping no one notices that you can’t quite see the page.
Back then, I didn’t have a name for any of this. I didn’t have a diagnosis. I just had a growing sense—the kind of dread I’d once treated as a literary concept—that something was shifting under my feet.
This essay is an attempt to understand that shift from the inside.
It’s not a catalog of symptoms or a plea for pity. I’m not interested in ranking pain on some moral scoreboard. I want to lay out, as honestly as I can, what it’s like to live in a body shaped by multiple sclerosis: the physical pain, the emotional fallout, the mental loops that show up at three in the morning. I want to say clearly that your pain counts, whatever it looks like—and, also, that when other people in a similar boat talk about despair or exhaustion, I fucking get it in a way I didn’t before.
And, I want to end this first part where I actually live most days: somewhere between dread and gratitude, betting that science and medicine—very likely with AI in the mix—will crack at least some of this open in my lifetime.ake it stand out
Whatever it is, the way you tell your story online can make all the difference.
Before the Diagnosis
It’s easy, looking back, to see the trail of breadcrumbs.
Years before anyone said “MS” out loud, my body was already leaving hints. Strange visual episodes. Odd little hallucinations. A bad run of fatigue that didn’t line up with my age or activity level. I had what I now know are classic neurological curiosities: a shock of electricity down my spine when I bent my neck just so, a sudden buzzing in my limbs, the sense that my eyes and the world were slightly out of sync.
But, I was in my twenties. I was writing stories, teaching, working, dating the woman I’d eventually marry. I swept a lot of it under the rug.
In 2016, my family took a beach vacation—the same trip where I proposed to Christa. It should have been a clean snapshot: young couple, ocean breeze, big future. At one point I ran on the sand. I’d run before. I wasn’t an athlete, but I wasn’t fragile. This time, though, my legs felt wrong. Heavy. Uncoordinated. My left leg almost refused to bend. My balance was off. I remember looking down at my own body like it belonged to someone slightly drunk.
I chalked it up to the heat, or the uneven sand, or just being out of shape. Then, I got down on one knee in that same body and asked Christa to marry me (while telling some meandering story complete with mementoes I’d bought).
That’s one of the weirdest things about the early stages of chronic illness: life doesn’t pause to give you a clean narrative. You get the proposal and the bad run on the same vacation. You get the joy and the data point in the same frame, and you don’t yet know which one is foreshadowing.
The Phone Call and the Spreadsheet Version of Pain
On the evening of January 10, 2017, my primary care doctor called.
She told me my recent MRIs showed signs of multiple sclerosis and that she was referring me to a neurologist. I made a joke.
“At least I know it’s not all in my head,” I said (just glad it wasn’;t a tumor or something).
“Well,” she replied, “it kind of is.”
I appreciated the honest humor. We talked through next steps: more MRIs, a consult, medication options. On paper, my life looked stable. I was 25. I was one semester away from finishing my MFA. I was engaged. I lived with my parents, which meant I had a safety net. I worked two jobs—a graduate assistantship and a cashier gig at a bookstore.
A week later, on January 18, I got the official diagnosis. Relapsing–remitting MS, which has since evolved into a primary progressive picture. Over time, neurologists and specialists would add more details. My optic neuropathy didn’t look typical. They tested me for Leber’s hereditary optic neuropathy with full exome sequencing. The genetic test came back negative. My neurologist and neuro-ophthalmologist pieced together the puzzle as best they could.
If you look at my situation in medical language, it sounds like this:
I’m disabled. My EDSS score is 6.5. I use a wheelchair almost all the time. I can walk short distances with support from both arms, but it’s limited and exhausting. My symptoms include optic neuropathy, visual field defects, nystagmus, chronic blurred vision, clonus, balance loss, chronic pain, spasticity, extreme fatigue, muscle weakness, reduced manual dexterity, occasional numbness and tingling, and occasional Lhermitte’s sign. Lately, I’ve started losing speech in fits and starts, which is especially unnerving because it’s one of my last reliable ways of reaching out into the world.
That’s the spreadsheet version of pain: the bullet points, the metrics, the vocabulary that shows up in medical notes and disability forms.
It’s accurate. It’s necessary. But it is not the experience.
What Pain Actually Feels Like (for M]e)
Pain is less a single sensation and more a crowded room.
There’s the baseline, low-to-moderate ache in my legs and back, the kind of thing that would make most people want to sit down and rest for a while. Except resting doesn’t fully make it go away. It just changes the angle. There’s the tightness—spasticity—that wraps around my muscles like too-small rubber bands. There’s the sudden spike, the “oh shit” jolt in my spine if I move the wrong way, like someone plugged my body into a wall socket.
Then, there’s fatigue. Chronic fatigue is its own category of pain, the kind that doesn’t hurt in a sharp, clean way but dissolves your ability to stand, to think, to be patient with your kids. It’s the feeling of working with 20% battery, every day, knowing there’s no charger in the room and no way to swap the battery out.
Over all of that, there’s a subtle, constant sense of instability. My balance is fragile. My hands are less reliable than they used to be. My vision is like a low-res video stream with occasional glitches. When you stack all of that together, the world becomes a little more threatening. Stairs, curbs, small children running around the house—things that used to be background details—become moving parts in an ongoing risk assessment.
Pain also messes with time. A spasm that lasts ten seconds can make a minute feel like an hour. A day of “manageable” pain can feel like a small victory; a day where it spikes can feel endless.
This is the physical side. But to pretend it’s just physical would be a lie.
The Emotional Pain: not the Husband, not the Dad (or so the Story Goes)
Here’s the part that’s harder to talk about.
Pain isn’t just a signal from your nervous system. It’s a story you tell yourself about what that signal means. For me, a lot of the emotional pain centers around the gap between the husband and father I imagined I’d be and the one I actually am.
I can’t help around the house the way I want to. I can’t rush in and grab a laundry basket, mop the floor, or spontaneously decide to rearrange furniture (except cushions for “castles” sometimes) because it would make the space more fun for the kids. Everything I do has to be planned, paced, and measured against my limited energy and mobility.
Bedtime is the sharpest example. I’m a writer. Stories are supposed to be my thing. But reading physical books is hard now. My vision makes it a chore. By the time bedtime rolls around, my fatigue and spasticity are often at their worst. Christa, who already carries so much, ends up doing a lot of the classic bedtime work: corralling kids, wrangling pajamas, reading picture books.
There are nights I lie there and think: This is not the husband she signed up for. This is not the dad my kids deserve.
I know, intellectually, that this is only part of the truth. I know I bring other things to our family: presence, thoughtfulness, the ability to listen and explain and comfort. I know my daughters don’t have a spreadsheet in their heads tracking how many baths I’ve given them or how many stairs I’ve climbed. They know whether I’m there, whether I respond, whether I love them. On good days, that knowledge sinks in.
On bad days, the story in my head is harsher. Pain narrows your focus. When your body is screaming, it’s easy to see yourself as a burden, a problem to be managed, a drag on people who deserve a “normal” partner and parent.
This is the mental and emotional side of chronic pain that doesn’t show up in symptom lists. It’s not sadness in the clean, cinematic sense. It’s a low-frequency hum of self-doubt, a constant temptation to judge your worth by the tasks you can no longer do.
Circling Despair (and what it Means to “Get It”)
I’ve never had a long, sustained depressive episode in the clinical sense, but I’ve definitely circled the drain.
There are nights when I lie awake and run through the greatest hits: it will get worse; I will become more dependent; I might lose more speech; I might lose the ability to write; our finances will be strained; my kids will remember me more as a person being cared for than as a caretaker. The future collapses into a slideshow of worst-case scenarios.
If you live with a chronic illness or chronic pain, you know this terrain. It’s the place where statistics and prognosis curves stop being abstract and start feeling like personal prophecy. You read a line in a study—about progression rates, about average time to needing full-time assistance—and it hits you like a brick to the chest.
When people in similar circumstances talk about despair, I don’t have to imagine it anymore. I don’t need to translate it through a theoretical lens. I get it, viscerally. When someone says, “I’m tired in a way sleep doesn’t fix,” or “I feel like a burden,” there’s no part of me that thinks they’re exaggerating. Chronic pain carves deep grooves in your thinking. It’s easy to slip into them.
I’m careful not to turn that into a contest. Your pain is not less real because my EDSS score is higher or because my diagnosis has a scary-sounding name. Everyone, absolutely everyone, should feel free to say “this hurts,” whether it’s physical, emotional, or both—if you’ve stubbed your toe, or tweaked your neck, or are eperiemcing grief, or are suffering in some psychotic episode, it matters. But ,part of what I want to be honest about here is that chronic illness has given me a new, unwelcome fluency in certain kinds of suffering.
I say “unwelcome” because I would, without hesitation, give it back.
Gratitude Without Gaslighting Yourself
Here’s where things get tricky.
On the one hand, my life is objectively hard in ways it didn’t used to be. My body is damaged. My energy is limited. My future, physically speaking, is almost certainly narrower than it would have been without MS.
On the other hand, I live in a wealthy country. I have access to specialists, medications, assistive technology. I have a supportive partner, kids I adore, extended family that cares. We’re not living in the middle of a famine or a war zone. We’re not fleeing violence. We are not facing the kind of desperate, acute suffering that millions of people on this planet wake up to every day.
Sam Harris has a line he comes back to often: if a huge number of people living with unimaginable hardship could snap their fingers and switch lives with you, they would experience that switch as a miracle, as literally having their prayers answered.
I think about that a lot.
From my perspective, MS is a heavy, often brutal fact of my life. From the perspective of someone in a refugee camp, or a child in a famine, or a person living under an openly murderous regime, my life might look like a dream: safety, shelter, food, medicine, family.
The point isn’t to weaponize that contrast against myself. “Other people have it worse” is a terrible way to shut down honest conversation about pain. It’s a great way to make people feel guilty on top of everything else.
For me, the tension is this: I want to take my pain seriously without pretending it’s the worst thing that could happen to a person. I want to honor the real difficulty of my situation while staying awake to the fact that I am, in many ways, incredibly lucky. I don’t always balance this perfectly. There are days when gratitude feels abstract and pain feels immediate. There are other days when the privilege of my position hits me so hard it almost feels like shame.
But, when I zoom out, this is still the frame: I’m in the middle of something hard, but not hopeless. I have reasons to hurt and reasons to be grateful. Both are true at the same time.
How Meditation and Nondual Practice Fit In
I’ve been drawn for years to secular, nondual traditions—certain schools of Buddhism, Dzogchen, Zen, Advaita, Sufi Islam, and some Christian theology (from people like Meister Eckhart. I don’t treat any of it as metaphysics. I treat it as a set of tools for paying attention.
Before MS, that attention was mostly aimed at thoughts, emotions, the usual “who am I, really?” questions. After MS, a lot of it turned toward pain.
One of the simplest—and hardest—lessons from these traditions is that sensations and thoughts arise in awareness; they are not the same thing as the one who knows them. In practice, that can look like this: instead of “my leg is killing me,” I try to notice “here is a set of pulses, tightness, burning, pressure, showing up in experience.” Instead of “I am broken,” I try to notice “here’s the thought ‘I am broken’ passing through the same space where the sound of the air conditioner and my daughter’s laughter are also passing through.”
This doesn’t make the pain go away. It’s not a magic trick. But it changes the relationship. The pain is still intense, sometimes overwhelming, but it’s not everything. There’s also seeing, hearing, feeling, thinking. There’s the texture of a blanket. There’s the warmth of my kid’s hand on my arm. There’s Christa’s voice in the next room. All of that is happening in the same field.
On some days, this perspective is available. On others, it’s not. I’m not a monk. I’m a tired dad with neurological damage. I lose the thread all the time. But the thread is there. The possibility is there: to experience pain not as my whole identity but as one chapter in a much messier, richer story.
Fear, Terror, Dread– the Body Edition
In that essay, I struggled to read in graduate school, I tried to break down “the horrific” into three pillars: fear, terror, and dread.
Fear was the generalized sense that something bad might happen. Terror was immediate, acute danger. Dread was the heavy, existential sense that things might be meaningless or hopeless.
I didn’t know it then, but I was sketching a map I’d later walk with my own body.
Fear, in the context of MS, is the MRI machine, the waiting room, the follow-up appointment. It’s the feeling before a phone call from a doctor, the subtle tightening in your chest when you notice a new symptom and think, “Is this it? Is this another step down the slope?”
Terror is the sudden fall when your balance gives out. It’s the moment your speech drops out mid-sentence and you realize you can’t make the word come. It’s the electric shock down your spine when you bend your neck and your nervous system misfires. Terror lives in moments: sharp, vivid, adrenaline-drenched.
Dread is quieter. It’s the awareness that, barring some future medical breakthrough, this is progressive. That more functions will likely erode over time. That your kids will grow and you will, in some ways, shrink. Dread is not a jump scare; it’s the background music. It’s the part of the story where you realize the monster isn’t going away when the credits roll.
The strange thing is that alongside fear, terror, and dread, there’s also something like stubborn hope. Call it optimism. Call it denial. Call it survival.
Why I’m Still An Optimist (and why This Is Only Part 1)
Even with all of this on the table—the pain, the guilt, the exhausted nights—I remain, somehow, an optimist.
Part of that is temperament. I’m wired to look for the angle where things get better, even if it’s a long shot. Part of it is the time we live in. I was diagnosed in 2017. In the years since, the pace of medical research and technology, especially AI, has accelerated in ways that would have sounded like science fiction when I was a teenager.
I don’t have a fantasy that some perfect cure will drop into my lap next year. But I do think it’s reasonable to expect better treatments, better assistive tools, better ways to restore or bypass damaged systems. AI is already helping researchers find patterns in data that human eyes would miss, design new molecules, repurpose existing drugs. It’s already helping people like me navigate the world with less friction—reading, writing, organizing information, connecting with others.
There’s a version of the future where my body continues to decline and my quality of life still improves because the tools around me get better. There’s a version where some of that decline is slowed or partially reversed. I don’t know which version I’ll get. No one does.
What I do know is this: I’m in the middle of the story, not at the end of it. This is Part 1, not the whole book.
Understanding pain, for me, means acknowledging all of it—the physical, the mental, the emotional; the fear, the terror, the dread; the guilt and the gratitude; the days I feel like a burden and the days I feel indescribably lucky. It means refusing to turn my life into either a tragedy or an inspirational poster.
It also means holding on to a simple, stubborn belief: that it’s worth sticking around to see what happens next.
In Part 2, I want to look more closely at that forward-facing piece—how science and medicine, especially with AI in the mix, might change the landscape of pain, and what it means to build a good life in a body that hurts.
For now, this is where I am: hurting, grateful, tired, curious—and, improbably, still optimistic.
