The Words That Don't Translate

The Vocabulary You Don’t Have #

In my family, we have words that don’t exist in any medical chart.

Mucus-y. That’s what we call the days when I sit hunched over a bucket, spitting gobs of it out, constantly trying to clear my nose and throat. “I’m having a mucus-y day” tells my mom more than any symptom list could. It means the gastroparesis is flaring, the swallowing is worse, everything is backed up, and I need to be left alone with a bucket and no expectations. A doctor would write “excessive mucus production secondary to gastroparesis and chronic sinus issues.” We say “mucus-y” and we both know what it means.

Whooshy. That’s for when my pulsatile tinnitus is bad. I hear a whooshing sound in sync with my heartbeat, and it usually means my IIH pressure is climbing. “I’m feeling whooshy” means check my meds, watch for other signs, and don’t expect me to think clearly through the noise in my skull. A neurologist would say “symptomatic pulsatile tinnitus consistent with elevated intracranial pressure.” We say “whooshy” and it carries the weight of every hospital stay that started that way.

To squeaker. This one needs context. My dog Squeaker had a habit of peeing on my mom’s things, and my mom had to stop herself from choking him more times than I can count. So we coined a verb. “I’m going to squeaker him” means I’m going to choke someone. It’s dark. It’s funny. It’s the kind of word you build when the alternative is actually losing your mind.

Disabled families build vocabularies like this. Not because we’re creative. Because the clinical words don’t carry the lived weight. “Excessive mucus production” doesn’t capture the shame and exhaustion of sitting over a bucket. “Pulsatile tinnitus” doesn’t capture the dread of knowing what’s coming. And no clinical term captures the specific frustration of loving a twelve-pound dog who keeps peeing on your mom’s new pillows.

These words are our language for experiences that don’t translate into the language systems use. And that gap, the distance between the words we have and the words they want from us, is where most of my life has happened.

The Wrong Story #

People have spent a lot of my life assuming they saw me clearly.

They saw that I was blind. They saw that I was verbal. They saw that I could write, think, learn, use technology, advocate, and explain things. They saw intelligence. They saw faith. They saw opinions. They saw determination.

And because they saw those things, many people assumed they were seeing the whole picture.

They weren’t.

They didn’t see what it cost to appear functional. They didn’t see the executive dysfunction underneath the words. They didn’t see the sensory overload, the fatigue, the swallowing problems, the GI issues, the pain, the non-24 sleep rhythm, the medical instability, the autistic processing load, or the amount of support it takes for me to do basic daily life.

They didn’t see that being able to explain my needs isn’t the same thing as being able to meet them by myself.

They didn’t see that being able to use a computer isn’t the same thing as being safe, fed, clean, medicated, regulated, and supported.

They didn’t see that “independence” was often just another word for “alone with needs no one was helping me carry.”

The wrong story says that if someone is intelligent, articulate, and motivated, they should be able to become independent with enough training.

The wrong story says that if someone can do a task once, they can do it consistently.

The wrong story says that if someone can speak, they can always communicate.

The wrong story says that if someone is young, they don’t belong in long-term care.

I have lived inside that wrong story for a long time. I have tried to make myself fit inside it.

But wanting a version of me to exist didn’t make her real.

The real me can be smart and still need help showering regularly. The real me can write essays and still struggle to feed myself safely. The real me can advocate for disability justice and still need someone else to notice when the structure around me is collapsing. The real me can understand complicated ideas and still need daily support with medications, meals, hygiene, sensory regulation, medical coordination, and basic stability.

Those things don’t contradict each other.

But many systems act like they do.

The Finished Version Is What People See #

Part of how the wrong story survived is that people only saw the end result.

They saw the polished email. The thoughtful explanation. The essay that sounds clear by the time I’m done with it. The fact that I learned to read early, talked before I was six months old, and read a medical dictionary when I was six.

Once people know you can produce polished language, they often start expecting every attempt to be polished on the first try.

What they usually don’t see is how much it costs to get there.

They don’t see me sitting with a blank document and not knowing how to start, even when I know exactly what I want the piece to be about. They don’t see me going over what to say in my head for hours before a conversation. They don’t see me knowing the shape of what I mean, but not being able to get the wording to line up. They don’t see me getting stuck on one sentence because I know it isn’t landing right, but I can’t yet find the version that does.

People mistook the quality of my finished language for the ease of producing it.

Being good with words is not the same thing as words being easy.

That distinction has shaped a lot of my life.

Pressure makes language harder, not easier. “Spit it out” was never a shortcut. It was interference. Being rushed doesn’t pull the words out faster. It adds pressure to a system that is already straining.

And the problem isn’t that I don’t know what I think. The thought exists. It’s just in a form that is not yet language. Or not yet organized language. Or not yet shareable language. The translation step is expensive. Getting from “I know the shape of this” to “here are the words” is often the hardest part.

People saw the words after I had already fought for them. And then they assumed the fight never happened.

Visible in the Wrong Ways #

One of the hardest parts of complex disability is being visible in the wrong ways and invisible in the wrong ways.

Blindness is visible enough that people notice it, but not always in a useful way. Sometimes it makes people flatten me into helplessness. Other times, if I have enough blindness skills, they assume blindness must be the main barrier and everything else is secondary.

Autism is often invisible until my needs become inconvenient.

Chronic illness is invisible until my body refuses to cooperate.

Executive dysfunction is invisible until something doesn’t get done.

The need for care is invisible until the lack of care becomes a crisis.

And then, once the crisis is visible, people may suddenly act shocked that I can’t simply “be more independent.”

That’s the part that hurts.

Because I wasn’t suddenly disabled. I wasn’t suddenly high support. I wasn’t suddenly struggling. The struggle was there. It was just being interpreted through the wrong story.

Systems like clean categories. They like checkboxes. Can you walk? Can you speak? Can you eat by mouth? Can you make decisions? Can you call someone if there’s an emergency?

These questions matter, but they aren’t enough. They don’t capture whether eating by mouth is safe, exhausting, limited, or nutritionally adequate. They don’t capture whether walking across a building causes pain, fatigue, sensory overload, or disorientation. They don’t capture whether a person can make decisions but can’t reliably execute the steps without support.

They don’t capture mucus-y days. They don’t capture whooshy nights. They don’t capture the words we built because the clinical ones weren’t enough.

That’s where people like me fall through. Not because our needs are imaginary. Because our needs are inconvenient to measure.

The One Who Saw Me #

There was one being who never saw the wrong version of me.

The day Squeaker chose me, I was in pain. It was 2015. My mom was riding with a friend’s mother when they saw a tiny puppy walking down the middle of the road, trailing a broken leash with a duct-taped collar. My mom didn’t want to stop. Her friend’s mother insisted. They picked him up, and when they got to our house, her friend’s mother brought him inside and left him there.

My mom told me not to get attached.

But one day she came out into the living room where I was curled up in the recliner on a bad pain day, and he was in my lap. He’d claimed me. And between that and the smile she saw on my face, she couldn’t say no.

I’m autistic. I’m blind. I have low energy. I’m chronically ill. I’m not the person dogs pick. I’m not the person who runs and plays and throws things. I’m the person lying in the recliner on a bad pain day, and that’s the person he walked over to and chose.

He didn’t know he was supposed to prefer someone else. He didn’t know the pattern. He didn’t know the rule. He just walked in, looked at me, and decided.

That was eleven years ago. He’s never changed his mind.

Squeaker was never trained as a service dog. Nobody taught him to alert. Nobody asked him to do anything. He decided. He often senses my flares before I do, and he’ll go and try to tell my mom when he does. When I’m not well, he gets clingier and won’t leave my side. The worse it is, the clingier he gets.

He gave himself a job I never asked him to do. He’s better at noticing when something’s wrong than most humans I’ve met.

He never needed me to perform independence. He never needed me to be less disabled. He never needed me to explain my support needs or justify my care setting or fill out paperwork. He needed me to be there. That’s all. Just there. In the room.

He saw the version of me that was actually there. Not the one people imagined. Not the one systems wanted. The one curled up in pain, and that was enough.

The Separation #

Squeaker is twelve now. He has bad teeth, sore joints, a heart murmur, and hyper-attachment issues. He’s elderly. He’s still sweet, still stubborn, still opinionated.

I’m in a nursing home.

He’s with my mom.

The separation isn’t something I chose. It isn’t something he understands. It’s the shape of what happens when you’re multiply disabled and the care system doesn’t have a place for you that includes the creature who’s been yours for eleven years.

My mom manages the communication between us. She tells me how he’s doing. She sends me updates. He’s getting his vaccinations now, shots underway so that he can come visit me. The visits are the thing I’m holding onto.

But the day-to-day reality is that I’m here and he’s there. He’s with my mom, who’s also going through a lot. He’s old and confused and attached to me and I’m not there. I’m in a facility that wasn’t designed for someone my age, and he’s in a house that doesn’t have me in it.

I think about him under the blankets with just his nose showing. I think about him sitting near my mom and looking at her with that fear-look, the one that means something’s wrong with me, except now something’s wrong with me all the time and I’m not even in the same building.

What It Costs #

People talk about what disability costs you in terms of independence, privacy, career, community, dignity. All of that is real. I’ve written about all of that.

But there’s another cost that doesn’t get talked about as much. The cost of being separated from the living being who knew you before the nursing home. The one who chose you when you were curled up in pain and never un-chose you. The one who gave himself a job because he decided you were worth alerting for.

And there’s a cost that’s harder to name. The cost of living in a world that has words for everything except what you actually experience.

Systems have language for “ambulatory” and “non-ambulatory.” For “verbal” and “non-verbal.” For “independent” and “requires assistance.” They have checkboxes and scales and assessments.

They don’t have language for a mucus-y day. For a whooshy night. For the verb that means “I love this dog so much I want to choke him.” For the feeling of a dog who chose you on a bad pain day and never needed you to be anyone else.

They don’t have language for the gap between who people see and who you are.

They don’t have language for grief that doesn’t come from losing yourself, but from realizing other people were never seeing all of you in the first place.

What It Would Mean to Be Seen #

I don’t want a future based on denial anymore. I want a future based on reality.

Not a hopeless reality. Not a flattened reality. Not a reality where needing care means giving up personhood.

A true reality. One where the question isn’t “How do we make her look independent enough?” but “What support would let her be safe, respected, connected, and herself?”

A reality where being seen means being seen in my vocabulary, not just theirs. Where a mucus-y day is understood as a real medical event, not an inconvenience. Where a whooshy night is a warning sign, not a complaint. Where the dog who chose me is recognized as part of what keeps me alive, not a luxury to be set aside when care settings change.

A reality where the words that don’t translate finally get heard.

Squeaker never needed me to translate. He never needed me to put my experience into language he could process. He just showed up, climbed into my lap, and stayed.

The door is closed right now. I’m here. He’s there. And somewhere on the other side of it, a small dog is making the sound he was named for, waiting for someone to open it.

I know how he feels.

I’ve been waiting for someone to open that door my whole life. Not the door to the room. The door to being seen. All the way. In the vocabulary that actually fits.

I’m still here. I’m still the version of me who’s actually here. And I’m still waiting.