Understanding Pain (Part 1) – Before it had a Name
The first time I realized something was wrong with me, I was trying to read my own words out loud.
This was in graduate school, before diagnosis, before MRIs, before the strange bureaucratic intimacy of neurology appointments and disability paperwork. I was in an MFA program, sitting in class with an essay I had written called Initial Thoughts on the Horrific. There is an irony there that is almost too neat now. At the time, though, it did not feel literary or symbolic. It felt embarrassing.
The page would not hold still. The lines blurred. The words slid into one another. I knew what I had written, knew the argument, knew the rhythm of the sentences because they were mine, and still I could not reliably see them well enough to read them aloud.
That was one of the first unmistakable moments. Not the first strange symptom, not the first odd bodily betrayal, but one of the first moments that felt impossible to explain away. Reading had always been one of the most natural things in my life. Writing, too. Even when I was tired, distracted, anxious, or unprepared, language had usually remained available to me. Then suddenly it wasn’t. Or not in the same way.
Later, around graduation, I had to read a story aloud to colleagues and faculty. That should have been a good moment, or at least a clear one. Instead, it carried the same private panic. Again the page fought me. Again I improvised, compensated, tried to make the problem invisible.
That is part of what I want to write about here. Pain is not just pain. Illness is not just illness. Before there is a diagnosis, before there is even a useful suspicion, there is often a long period of confusion and self-translation. You are not only suffering; you are also narrating. You are deciding what counts, what can be dismissed, what can be laughed off, what can be hidden, what might still be temporary. You are constantly asking whether the thing is real, whether it is serious, whether you are overreacting, whether you are somehow doing this to yourself.
I want this essay to be honest about all of it: the physical pain, the emotional pain, the exhaustion, the fear, the shame, the gratitude, the guilt, the little humiliations, the large private terrors. I also want to be careful with the tone. I do not want to write a pity piece. I do not want to write a dramatic list of symptoms and call that truth. Plenty of people suffer in ways I never will. Plenty of people have lives far harsher, more violent, more precarious than mine. That remains true. It also remains true that chronic pain and chronic illness change the structure of a life from the inside.
Both things can be said at once.
This is Part 1 because I am still in it. My condition is progressive. I know that. I also believe, stubbornly and maybe characteristically, that science and medicine will keep moving, and that breakthroughs are not fantasy. I expect better tools, better treatments, and perhaps more than that. I especially expect AI to accelerate some of what medicine can do. That optimism belongs at the end of this piece. To get there honestly, though, I have to begin before any of that felt available, back when all I had was a page I suddenly could not trust.
Before the Name
Looking back, I can trace the outline more clearly than I could then. That is one of the quieter cruelties of diagnosis. Once you know, the past rearranges itself. Incidents that seemed random start to glow with significance. Moments you shrugged off begin to look like early warnings. The body, in retrospect, was talking long before anyone around you had the vocabulary to hear it.
In those years, I had a growing sense that something in me was off. Vision was part of it, though not in a clean, simple way. Fatigue was part of it, though fatigue is easy to dismiss because everyone is tired and modern life practically requires it. There were odd sensations, strange neurological hiccups, little disruptions that did not fit neatly into any one story. There were also things I could still do, and that made denial easy.
Pain does not always arrive as a single dramatic event. Sometimes it arrives as an argument with yourself.
A family vacation in 2016 stands out now. This was the same trip where I proposed to Christa, which gives the memory a shape I could never have invented on purpose. At one point I ran out of the water and up the beach and immediately felt how wrong my body felt. Not “I’m winded.” Not “I’m out of shape.” Something stranger than that. My balance felt wrong. My legs felt off. The whole motion carried a low-level wrongness that was hard to name because it was not dramatic enough to force a scene, only unsettling enough to stay with me.
That seems important now, too: the body often becomes uncanny before it becomes catastrophic. You are still recognizably yourself. You can still laugh, walk, flirt, make plans, kneel in the sand and ask someone you love to marry you. At the same time, something has tilted. The future is already shifting under the present, though no one has said so yet.
Life does not pause to keep your symbols orderly. The same stretch of time can hold a proposal and a warning. Joy and dread can occupy the same frame without announcing themselves as opposites. One of the things illness has taught me is that contradiction is not a glitch in experience. It is often the structure of experience itself.
The Call
I was diagnosed with MS in January 2017.
The diagnosis itself did not arrive in some cinematic flash. It arrived the way many life-altering things arrive now: through appointments, imaging, referrals, specialists, follow-ups, and the slow accretion of information.
There was also one darkly funny moment with my primary care doctor that has stayed with me. She called me after my MRI and told me it showed signs of MS and that she was referring me to neurology. I made some half-joking comment about at least being relieved it was not all in my head, meaning not a brain tumor or something comparably horrible.
“Well,” she said, “it sort of is.”
It was exactly the kind of line that lands differently before and after your life changes.
My case was not especially tidy. I present with a range of symptoms, some of which do not fit as neatly as people might expect. My optic neuropathy, for example, progressed in a way that puzzled my neuro-ophthalmologist enough that he had to rule out Leber’s with genetic testing. I have undergone full exome sequencing. There has been a lot of trying to make the pattern cohere.
I generally just refer to my condition as MS, though the formal diagnosis is PPMS. “MS” is both simpler and, in some ways, truer to how it feels to live it. Diagnoses are essential. Categories matter. At the same time, no category captures the whole thing. A neurologist has to classify. A person has to live.
The strange thing about a diagnosis is that it can feel both clarifying and insufficient. On one level, the name helps. It gives shape to what was previously a scattered set of failures, distortions, and private worries. It tells you that you were not inventing the problem. Your body was not being difficult for literary effect. There was a disease process. There was damage. There was a reason.
At the same time, the name does not tell you how to be a husband. It does not tell you how to be a father. It does not tell you what to do at bedtime when your kids want stories and your vision makes books feel like hostile objects. It does not tell you how much to hope, how much to prepare, how much to grieve, how much to fight.
A diagnosis explains something. It does not explain everything.
The Medical Version
The medical version of my life now can be stated pretty quickly.
I am disabled. I identify that way without hesitation. I almost always use a wheelchair, though I can still stand and walk short distances with bilateral assistance. My EDSS score is 6.5. I deal with optic neuropathy, visual field defects, nystagmus, blurred vision, clonus, balance loss, chronic pain, spasticity, chronic fatigue, muscle weakness, reduced manual dexterity, occasional numbness and tingling, occasional Lhermitte’s sign, and more.
Those are only some of the symptoms, really, and it is not worth turning this essay into an exhaustive inventory of everything that has gone wrong or gone strange. Lists can be useful in a doctor’s office. They are not the experience.
Lately, one of the more frightening changes has been intermittent loss of speech. That especially gets to me because speech is one of my few remaining clean outputs. When your vision goes, language becomes even more important. When language itself starts to flicker, even occasionally, the fear lands differently.
This is the spreadsheet version of pain. It is not false. It is often necessary. Insurance companies like it. Medical charts like it. Specialists need something like it to track progression. Still, it remains radically incomplete.
Pain in a lived life is not a spreadsheet. It is an invisible tax on attention. It is the difference between what you intend and what you can carry out. It is a change in how long everything takes, how much planning everything requires, how many ordinary acts become negotiations. It is not just that your leg hurts or your vision blurs or your muscles lock. It is that your whole relation to the day changes.
Medical language can name a symptom, but it rarely captures the existential drag of it. “Fatigue” sounds like something a nap might fix. “Spasticity” sounds like something you would define for an exam. “Visual impairment” sounds like a category. The lived versions are messier. Fatigue can make thinking feel expensive. Spasticity can make the body feel rigged against itself. Visual impairment can turn ordinary rooms into puzzles.
There is value in the medical version. I am grateful for it. But part of living with illness is learning when that version has done all it can do.
What Pain Feels Like From the Inside
Physical pain, for me, is not one thing. It is a shifting set of pressures, strains, jolts, resistances, and background noise. Some of it is easy enough to describe. My body can hurt in straightforward ways: aching, tightness, sharp interruptions, the ugly electricity of a misfiring nervous system.
Spasticity can feel, at times, like my limbs have been wrapped in barbed wire for a short while. That is not my phrase originally, but when I came across it, it felt uncomfortably accurate. Other times it feels like my muscles have been turned into arguments. A leg refuses to release. A hand does not do the small thing a hand is supposed to do. A movement that should be automatic becomes a negotiation I did not agree to have.
Fatigue can move from mild to extreme, and it is hard to explain to people who have only known ordinary tiredness. Ordinary tiredness still assumes a baseline self underneath it. Chronic fatigue starts to threaten the baseline. It does not simply say, “You need rest.” It says, “The person who was going to do this may not be available.”
That distinction matters. Pain is not only sensation. It is also erosion. It wears at patience, confidence, spontaneity, ease. It changes how much of yourself is available for other people. Some days the pain is not severe enough to sound impressive if I describe it out loud, but it is still enough to reduce the size of my day. Chronic illness does this constantly. It converts the small into the consequential. It makes margins matter.
Vision loss complicates everything further. Being legally blind is not just one limitation. It reshapes how nearly every task feels. Reading becomes labor. Navigation becomes calculation. The world comes to you in partial information. I do think my hearing has sharpened somewhat in response, though I cannot prove that in any rigorous way. I also think I occasionally experience a very mild synesthetic effect, as though sensory loss and sensory compensation are sometimes doing odd side work in the same nervous system. I would not build a theory on that. I just know experience has become stranger.
Pain also has a way of blurring categories. Physical pain is never merely physical once it persists long enough. It starts to seep into self-concept. It changes the stories you tell about your worth, your usefulness, your future, your obligations, your failures.
The body hurts, and the mind begins to annotate.
The Pain That Is not Physical
Some of the hardest pain in my life is not located in a nerve or muscle at all.
I have often felt, and sometimes still feel, that I am not the husband Christa deserves or expected. I do not mean that melodramatically. I mean it in the ordinary, crushing, domestic sense. I cannot help around the house the way I want to. I cannot step into tasks casually. I cannot carry my share the way I once assumed I would. There are a thousand little acts that form a home, and disability changes your relation to all of them.
This is not only about chores, though chores are not nothing. A house is made of repeated acts. Dishes. Laundry. Baths. Bedtime. Appointments. Backpacks. Meals. Small repairs. Cleaning the thing that was clean five minutes ago and somehow is not clean anymore. When you cannot move freely through that world, the deficit is not abstract. It accumulates in the people you love.
Fatherhood intensifies that pain. I love my kids more than I know how to summarize. That love does not erase the sting of limitation. I cannot read bedtime stories the way I want to. For a writer, for someone whose life has always been braided with language and books, that one lands hard. It is one thing to say reading has become difficult; it is another to feel the emotional shape of that loss in a child’s room at night.
There are practical workarounds, of course. There are always workarounds. Audiobooks. Voice tools. Memory. Improvised stories. Other forms of presence. I believe in those things, and I rely on them. What hurts is not only the task itself but the image of the father I assumed I would be.
That image still haunts me sometimes. The husband who does more. The dad who lifts more, runs more, reads more, helps more, moves through the house more freely, takes more off Christa’s plate, steps in without calculation. There are days when I feel that absence sharply enough that it turns into shame. Chronic illness is very good at generating the feeling of being a burden, even in a house full of love.
I know the argument against that feeling. I know I am not reducible to chores I cannot do or rituals I cannot perform in the same way. I know that presence matters. Listening matters. Thoughtfulness matters. Love matters. I know my kids are not running a performance review. All of that is true. Shame does not disappear just because it has been logically refuted.
This is one reason I feel such immediate recognition when other disabled people or chronically ill people talk about despair, exhaustion, or the sensation of becoming less legible even to themselves. I am not interested in pain Olympics. I do not think suffering needs to be ranked. Everyone should feel free to express discomfort or pain. Everyone.
At the same time, there is a particular texture to chronic physical pain, chronic limitation, and progressive loss that I now understand from the inside. When someone in a similar boat says they are tired in a way sleep does not fix, or scared in a way reassurance does not touch, I fucking get it.
I say “get it” because I do not need to translate it anymore. I do not need to imagine it from a distance. I get it viscerally. Chronic pain and progressive illness have given me a fluency in certain forms of suffering I never asked for.
I say “unwelcome” because I would, without hesitation, give it back.
Circling Despair
I have not lived in continuous despair. That matters to say. I do not want to overstate or distort my own life for the sake of drama. Still, I have circled it.
There are nights when the future feels less like an open field than a narrowing hallway. Nights when I think about progression, dependence, speech, vision, mobility, money, pressure on Christa, pressure on the kids, and the general humiliating fact that the body can keep changing whether or not your soul is ready. There are nights when fear stops being a specific thought and becomes the room I am sitting in.
A progressive illness invites speculation, and speculation is dangerous. It tempts the mind into rehearsing losses before they arrive. It asks you to live partly in projection. That projection can become its own pain. Even on relatively good days, it can sit in the background, humming. You are not only dealing with what is true now. You are also dealing with what may become true next.
This is where I think the distinction I once made in Initial Thoughts on the Horrific between fear, terror, and dread becomes unexpectedly personal. Fear is the anticipatory thing. Terror is the sudden thing: the fall, the shock, the speech failure, the moment of immediate bodily betrayal. Dread is broader. Dread is the long shadow cast by progression. Dread is knowing this might get worse and not knowing how much worse, how fast, or in exactly what form.
A lot of people know fear. A lot of people know terror. Chronic illness has given me a more intimate understanding of dread.
The temptation, with dread, is to treat it as prophecy. The mind is very convincing when it is afraid. It can take a possibility and dress it up as certainty. It can take a symptom and turn it into a whole future. It can say, “This is where the story goes now,” with the authority of someone who has seen the ending.
But, the mind has not seen the ending. That is important. Dread is not knowledge. It is a powerful emotional forecast, and sometimes it is responding to real evidence, but it is not the same thing as truth. I have to remind myself of that often.
Gratitude That Does not Cancel Pain
I also carry gratitude, and I want to be very precise about what I mean by that.
I do not mean gratitude as denial. I do not mean some motivational-poster nonsense where pain becomes a gift because it teaches me to appreciate sunsets and birdsong. I mean something more difficult and less sentimental. I mean the simple fact that my life, even with MS, contains extraordinary goods. I am loved. I love deeply. I have family. I have shelter. I have food. I have access to medical care and tools that many people on earth do not. I live free of war and starvation. I am not in a famine. I am not running from violence.
Sam Harris has made a version of this point, and it has stayed with me: someone living in circumstances of extreme deprivation, violence, or instability might switch lives with me and experience that switch as their prayers being answered. That thought does not erase my pain. It does, however, prevent me from absolutizing it. My life is hard. It is also, in many ways, lucky. Those statements are not enemies.
The challenge is learning how to hold both without using one to silence the other. “Other people have it worse” is a bad instrument if you use it to invalidate suffering. There is always someone worse off. That fact proves almost nothing at the level of personal experience. A toothache still hurts in a peaceful country. MS still changes a family’s life even if the family is safe and fed and loved.
What gratitude does, at its best, is widen the frame. It reminds me that pain is not the only truth in the room. It keeps me from becoming a pure witness to my own losses. It helps me notice what remains astonishingly good.
And there is so much that is astonishingly good.
There is Christa. There are the kids. There are jokes in the middle of exhaustion. There are little hands on my arm. There are moments when the house is chaos and I can still feel, with absolute clarity, that this chaos is the treasure. There are technologies that let me keep writing when writing should have become harder than it is. There are people who love me in ways that do not depend on my usefulness. There is the ordinary miracle of being able to say, even now, that my life is not only a record of loss.
Gratitude does not cancel pain. It keeps pain from becoming a dictator.
Attention, Awareness, and the Mind’s Relationship to Pain
My meditation practice matters here. I approach it through a secular, non-dual lens, mostly shaped by Buddhism, especially Dzogchen and Zen, but also informed by Advaita, Sufi Islam through figures like Rumi and his poetry, and even some Christian theology through people like Meister Eckhart. I do not mean that I have become serene about pain. I have not. I mean that years of practice have given me at least some tools for observing what experience is made of.
Pain changes when you look closely at it, not because it disappears but because it stops being only a concept. Sometimes it is tightness. Sometimes it is pressure. Sometimes it is heat, buzzing, strain, electrical interruption. Sometimes the greater pain is actually the thought attached to the sensation: this will never stop, this is getting worse, I am failing, I am becoming less myself.
The mind throws language over the body constantly. Meditation does not end that process, but it can make it more visible.
That visibility matters. It is one thing to hurt. It is another thing to hurt and then immediately become the author of a totalizing story about what the hurt means. I do that all the time. Most people do. Practice, when it helps, creates the slightest bit of distance. Not indifference. Not transcendence. Just enough room to see that a sensation is arising, and a thought is arising, and a fear is arising, and these are related without being identical.
Sometimes that looks like catching the difference between “my leg is killing me” and “here is tightness, pressure, burning, and strain showing up in experience.” Sometimes it looks like noticing the difference between “I am broken” and “here is the thought that I am broken.” That distinction does not cure anything. It does, however, loosen the knot a little.
Some days that room is available to me. Some days it is not. Some days I can meet pain as part of awareness rather than as the whole of identity. Some days I am just a tired, hurting dad in a damaged body and all the dharma in the world is less convincing than a good nap. That is fine. I do not need to mythologize the practice for it to matter. Even a small amount of room can change the day.
And, even in the middle of pain, the field is larger than pain. There is the texture of a blanket. There is my daughter’s hand on my arm. There is Christa’s voice in the next room. There is the fact of being here at all. None of that erases suffering. It just keeps suffering from becoming the only thing in view.
The Future Is not a Cure, but it Is not Nothing
This is where I want Part 1 to end: not in denial, not in uplift for its own sake, but in genuine optimism.
I know this can get worse. I expect some of it will. I am not naïve about progression. MS is not waiting politely for my family to have an easier season. It is not checking whether I have the emotional margin for another change. Progressive illness has its own machinery, and I do not want to insult anyone else living with it by pretending a positive attitude can reverse biology.
At the same time, I live in an era where science, medicine, computation, and AI are moving fast enough that rigid pessimism feels less rational to me than optimism. I do not expect magic. I do expect acceleration. I expect better assistive tools, better interfaces, better therapies, and probably better ways of understanding diseases that have long resisted clean solutions.
One thing that gives me some optimism is that even the categories themselves are being questioned. MS has traditionally been divided into types: relapsing-remitting, secondary progressive, primary progressive. Those terms matter clinically. They shape treatment access, research design, and the basic story a patient is told about what is happening. But newer research using large datasets and machine learning suggests the disease may be better understood as a continuum, with changing dimensions of disability, brain damage, relapse activity, and disease activity that may not always announce itself through obvious symptoms.
That matters to me, not because it changes my day-to-day reality tomorrow morning, but because it suggests the map is still being redrawn. And when the map improves, the route can improve too.
AI, in particular, seems likely to matter. It already helps people like me read, write, navigate, summarize, communicate, and work around barriers that would otherwise close off whole parts of life. Beyond accessibility, I expect it to meaningfully accelerate research: target identification, drug discovery, trial design, diagnosis, pattern recognition, and the long, difficult work of matching the right intervention to the right person at the right time.
Maybe not on my preferred timeline. Maybe not cleanly. Maybe not in the form I would choose. Still, I think it would be strange not to notice the direction of things.
This optimism is not abstract for me. It is practical. It lets me imagine a future in which even if my body declines in certain ways, my quality of life still improves because the world around me becomes more responsive, more intelligent, more medically capable, and more accessible. There may be cures one day. There may be treatments that are good enough to feel like rescue. There may be technologies that restore functions we currently think of as simply lost.
I do not know. I do know I would rather live oriented toward that possibility than resigned to darkness.
That, I think, is one of the clearest things pain has taught me. Optimism is not the denial of suffering. Optimism is a stance taken in full view of suffering.
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 story.
For now, this is where I am: hurting, grateful, tired, curious—and, improbably, still optimistic. I am trying to understand pain without worshipping it, to describe loss without turning my life into tragedy, to admit despair without being claimed by it, and to look straight at what is hard while still expecting more from the future.
That is what Part 1 can say.
Part 2, if and when I write it, can look more directly at the future itself: medicine, AI, breakthrough, adaptation, and what it might mean to build a good life not after pain, but through it.
. Source notes I used for the research-backed context: Mayo Clinic’s overview of MS symptoms supports the variability of symptoms and examples like Lhermitte’s sign, walking difficulty, weakness, vision changes, fatigue, slurred speech, and mood changes. MS Trust and the MS Society both describe spasticity/spasms as stiffness, heaviness, tightness, involuntary movement, possible pain, clonus, and symptoms that can affect daily life and sleep. A 2025 Nature Medicine paper and Oxford summary describe an AI-based reclassification of MS progression using large clinical-trial datasets, supporting the essay’s point that MS may be better understood as a continuum rather than only fixed subtypes. A 2025 Nature Medicine review supports the broader claim that AI is being applied across drug development, including target identification, drug discovery, preclinical and clinical studies, and post-market surveillance.
I know what it means
Wildfires rage and don’t delay
But, your pain still counts
