Tag: Disability Awareness

Insights on the everyday experiences of individuals with disabilities, including the nuances of accepting or declining help.

Running on Fumes: Solo Home Edition

I’ve been home alone for more than a week now, with Jason away until Tuesday, and I’m running on fumes.

Here’s why. I’m doing the things Jason normally does. I’m keeping the house clean and not letting the dishes pile up in the sink. I’m keeping the litter box from smelling up the apartment. I’m making sure the kitchen and bathroom trash don’t add to the funk. And I need clean clothes for work, so the laundry can’t wait either. If I do all of that right, the apartment will look like nothing happened. That’s the part nobody sees.

Let me be clear: I’m not complaining. I like a clean home, and I can keep one. What I want to talk about is cost. Most chores take me more time and more energy than they would for someone else, and when I only have so much of both, every chore comes out of something else I could have done.

Why Jason Is Gone

Jason is my partner, and he’s also my PCA. This year, Minnesota is moving people from PCA to a new program called Community First Services and Supports (CFSS). Because of that transition, there’s a gap in my hours, and the new program doesn’t start for me until November 1. We asked the county for an extension of my PCA services, and as of today, I haven’t gotten one.

With a month of no work, Jason decided it was a good time to visit a friend in Los Angeles. I knew about a week and a half ahead, so I had time to prepare. What I didn’t expect was how clearly this stretch would show me what those supports do. They don’t just get chores done. They give me the energy I need for everything else.

What Jason Usually Handles

Most days, a lot of the household runs through Jason, and I don’t always notice how much until he’s gone. He feeds the cat and cleans the litter box and any messes. He sets up the coffee for the next morning. He asks what I want for breakfast and lunch and gets both ready, and sometimes he gets the dog’s lunch ready too. He helps me get dressed once I’ve picked out my clothes, helps me with my shoes, and sometimes puts the cape on Surley. When I head out the door, he locks it behind me.

None of those jobs are huge. Together, they’re most of the small tasks that fill a day. When he’s here, I spend that energy on other things. This stretch, I’ve been spending it on all of them myself.

The Daily Math with Jason Gone

With Jason gone, my mornings start differently. I have a cup of coffee and feed the dog. Then I get the dog’s lunch ready and into my work bag and check that the cat hasn’t thrown up his breakfast. He’s on an automatic feeder that doles out small meals through the day, and I adjusted its timing because he occasionally throws up right after eating. I’d rather that happen when I’m home and can clean it up easily. Then I clean the litter box, looking around to see whether he went somewhere else in the apartment.

Somewhere in there I go to the bathroom, pick out my clothes, and get dressed, which is energy I don’t normally spend. I decide whether I’m taking a lunch and whether I’ll eat breakfast at home or grab something at work. A couple of days, that meant Caribou Coffee. Then it’s teeth, shoes, jacket, and Surley’s cape, and out the door. Locking it behind me is usually Jason’s job, so that’s one more thing I have to remember.

I get home between 5 and 5:45, check the mail, set down my work bag, and take off my jacket and Surley’s service dog cape. Then I check the apartment for cat throw up and clean up any I find. The cat gets a can of wet food, the dog gets dinner, and I grab one of the premade meals I ordered ahead of time so I didn’t have to cook lunch or dinner on top of everything else, feeding one of the animals while it heats in the microwave.

After I eat, I clean up and do whatever dishes are in the sink. Depending on the time, I might play video games for 30 minutes to an hour. Around 8, I take the dog out one last time, then set the coffee for the next morning. One day I forgot and woke up with none. Another time I set it but forgot to turn on the timer. Then it’s teeth and pajamas, and I’m in bed around 8:45, watching about an hour of TV before I fall asleep. At 4:45, I wake up and do it all again.

None of that is hard on its own. But it’s a long chain of small things, and if I drop one link, I usually find out at the worst possible time.

The Extra Steps

Last Sunday night, I noticed someone had been sick on my comforter. Probably the dog, since he was in bed with me, but I can’t say for sure. It wasn’t too cold in the apartment, so I threw the comforter off the bed and left it until Monday, when I was working from home. Then I had to time the wash so it didn’t collide with my work. Once it was washed, I hauled it down the hall to the dryer, because otherwise I’d be cold that night. That’s one task on paper. In practice, it was a few rounds of wrestling a heavy, wet comforter, and it used up energy I’d planned to spend elsewhere.

Dishes are the same. When you’re the only one dirtying them, it’s a cup, a bowl, and a few pieces of silverware. That sounds like nothing, but it still takes energy, and it still has to happen. Then there’s the trash. It had to go out a couple of times because of cat litter and my incontinence supplies, and I don’t want that sitting in the bathroom all day. When the bag filled up, I had to manhandle it out of the can and down the hall to the trash chute. Coming back was its own struggle, getting a fresh bag into the can.

None of these are big jobs. But they stack up, and by the end of the day I’ve spent most of what I had. If you read my post on shrimp videos and doing the math, this is the same idea. Every task draws from one pile of spoons, and a comforter or a trash bag comes out of the same pile as everything else. Preparing ahead helped, but it can’t make the pile bigger.

Work Doesn’t Pause

My job isn’t physically demanding. I sit at a computer for eight hours a day processing things, and compared to a lot of work, it’s fairly easy. But it takes focus and attention to detail, and you can’t do either well on an empty tank.

These past couple of weeks haven’t been slow at work. They’ve dragged. I was spending my energy at home, so by the time I sat down at my desk, I was already running on fumes. There were several days I wanted to call it a day, go home early, and just relax. That’s the part people don’t always see. The energy I use on a comforter or a trash bag in the morning is the same energy I need for a 2 p.m. stretch of detail work. It doesn’t refill in between.

Two Games, Two Weekends

Jason is away for two weekends, and both have a Minnesota United game. The first was a Saturday evening match. I went. I’d had the day to rest, and it was in the 70s and low 80s, which is about as kind as Minnesota weather gets for sitting outside in a wheelchair.

The second weekend’s game was midday Saturday, kickoff at 3:30, and the temperature was in the low 50s. I skipped it.

The cat threw up on Jason’s bed Saturday morning. I could have left it. Jason isn’t back until Tuesday, and it would have been there waiting for him. But I didn’t want to leave it, so I stripped the blanket and sheets and ran them through the wash, the same routine as the comforter the week before. Then the dishes were starting to pile up in the sink, and I wanted things clean. By the time everything was finished, it was 1 o’clock. I had little energy and even less enthusiasm for a game that started in two and a half hours, in the cold.

Nothing was wrong in the way people usually picture “can’t go.” I just had nothing left. The first weekend, I had rest and good weather, and I went. The second, I had neither, and I stayed home. Same fan, same team, different pile of spoons. I’m writing this on Saturday afternoon, during the match I skipped. That’s not a complaint either. It’s just what the math looked like today.

Coming Home

Jason gets back Tuesday, October 20, while I’m at work in the office. He’s told me plainly that he expects the house to be messy. That’s not how I roll. I want him to walk in to a clean home with as little waiting for him as possible. I’m also thinking about a Target delivery so there’s real food in the fridge when he gets home, and I already have a small premade meal delivery scheduled for that Tuesday, just four meals. After that, I’ll probably pause it.

Some of that is love, and some of it is just who I am. But it’s also the same math. Cleaning now, ordering ahead, and letting delivery carry the grocery run are all ways of spending spoons on purpose, so I’m not spending them on a bad day. He’s back Tuesday, but the gap in my hours runs until November 1, and this is how I’m trying to make that stretch easier for both of us.

What I’d Tell Myself

I’ve been pushing through. I haven’t asked anyone for help, and I haven’t left work early, even on the days I wanted to. I got the comforter washed, the trash out, and everyone fed. But I also skipped a game I’d been looking forward to, so pushing through wasn’t free.

Here’s what I keep coming back to: I had time to prepare, and I still ran low. I don’t know what that means yet. Maybe it means the preparing only goes so far. Maybe it means I should have asked for help sooner.

I haven’t figured that out. I do know this: the support I get isn’t a luxury. It’s what lets me spend my energy on the things I care about, like work, games, and my own home.

Pushing through isn’t a badge of honor, and it isn’t a failure either. It’s what I did with the energy I had. What I’m asking for isn’t for the work to go away. I’m asking people to understand what it costs.

On Tuesday, Jason will walk into a clean apartment. The dishes will be done, the litter box fresh, the trash out, and my clothes washed. From the outside, it will look like nothing happened. From the inside, that’s what running on fumes looks like.

How do you pace yourself when you’re the only one holding things up?

10/18/26
RJ Mitte, and What We Don’t See
Content note: This post talks about suicide and suicidal thoughts, including my own experience. If that’s not where you are today, save it for another time. No pressure.

If you need support right now:
- Call or text 988 (Suicide & Crisis Lifeline), or chat at 988lifeline.org
- Text HOME to 741741 (Crisis Text Line)
If you’re in immediate danger, call 911.

I found out Tuesday while scrolling Facebook. I’m not on social media much anymore, so I only catch things sporadically, and this was one of those moments where the news just landed. RJ Mitte died Monday. He was 34. He had cerebral palsy and used his own experience to inform his role as Walt Jr. on Breaking Bad. His representative confirmed he died by suicide. The investigation is still ongoing, so I’m not going to speculate about why. I don’t know, and neither does anyone else writing about this.

There’s already a flood of coverage trying to explain why. Some of it comes from unnamed sources, and I’m not going to repeat it. Nobody gets to be the final word on what was going on inside someone else. What I can say is that suicide is almost never about one thing, and we honor people better by not reducing them to a headline.

What I do know is what he meant to a lot of us. He was one of the first people I ever saw on television with cerebral palsy. I don’t remember exactly when I started watching Breaking Bad, but I thought it was really cool that there was a character with CP on the show. I remember when Walt Jr. got his driver’s license and his first car, and I thought that was pretty cool too. Before that, I didn’t see many people like me on screen, if any.

RJ was an ambassador for many organizations, and he put that into action here in Minnesota. On October 22, 2025, he visited Can Do Canines in New Hope to begin a partnership with our own service dog organization. He toured the facility, watched an assistance dog demonstration, and spent time with Tiff, a client who also has cerebral palsy, and her mobility assist dog, Tucker. He told reporters this wasn’t just a pet, it was “a partner.” I didn’t get the chance to meet him, and I wish I had. But it was awesome that a Hollywood celebrity chose to come to Minnesota and support a cause that matters so much to people like me.

I’m not writing this from a distance. I’ve lived with depression most of my life. I didn’t get a diagnosis until I was an adult and started seeing a psychologist regularly. In high school, I had suicidal thoughts, and I came close to acting on them. Something stopped me. I don’t know if it was an angel, a presence, or just a tiny voice in the back of my head, but I didn’t do it.

The next day, I told someone. A trusted person at school. I didn’t have polished words. I just said it, and they sat and listened. That’s all they did, and it mattered more than I can explain. They helped me through some very difficult times after that, and I’m forever grateful.

Living with a disability can make the hard days harder. Part of it is the struggle to do simple, easy things. Yesterday I got an Amazon package and had a hard time opening it. I ended up getting the scissors. It’s not having the same access as able-bodied people. It’s not being able to get in a car and just go. It’s planning, organizing, and coordinating just to do simple things. It’s exhaustion, it’s being overlooked, it’s all of the above. People with disabilities also face a higher risk of depression and suicidal thoughts, and that deserves more honesty than it gets.

So what helps me? People. Friends who have disabilities, and being able to talk to them. I also see my psychologist on a regular basis, just to check in. Sometimes we talk about the important things we’ve been working on for six months. Sometimes we talk about really cool things that happened in the last week. Both count.

I’m sharing this because it can happen to anyone. It can happen to famous people like RJ, and it can happen to people nobody has heard of. Success, visibility, and advocacy don’t make someone immune.

If you’re struggling, know that you’re not alone. I know that sounds cliché, and you hear it a lot, but it’s the truth, and it’s important that you hear it. It’s important that I say it, period.

I don’t want to turn RJ’s death into a neat lesson, because there isn’t one. But I don’t want us to quietly move on either. If you’re carrying something heavy, you’re not weak and you’re not a burden. Tell someone, even if it comes out clumsy. If someone tells you, you don’t need the right words. Sit and listen, like that person did for me.

If you want to honor RJ’s legacy in a practical way, Can Do Canines is always looking for volunteers and donations. You can read about his visit in their post and in WCCO’s coverage.

If this brought something up for you, the 988 information is at the top of this post. Please use it.

Who is your “trusted person,” or who could be? I’d love to hear in the comments, if you’re up for it.
10/14/26
Why Can’t Pants Just Fit?

Let me set the scene. I am in the bathroom, getting ready to do what one does in the bathroom, and I go to pull down my pants. Except I don’t really pull them down. They just slide. Right off my hips, no effort required, like they were waiting for an excuse.

My first thought was that I had grabbed a pair that were too big. It happens. I lost a significant amount of weight a few years ago and had to size down, and some of my older pairs are still floating around in the rotation. But no. I checked. Same size as my newer pairs.

Which brings me to a question I have been asking for years: why can’t a size just be a size?

Here is the thing about my wardrobe

Most of my clothes come from the boys department.

My shirts and pants, mostly from Target. My underwear, from JCPenney. A few adult shirts here and there, but adult sizing tends to run big and boxy, or long in the body and the leg, and none of that works great when you spend your day in a wheelchair. Boys sizing fits my body better, and there are real reasons for that.

I am not especially tall, and I have a slim waist. My hips are another story: cerebral palsy has affected my hip joints over the years, and that has shaped my proportions in ways that make standard adult sizing a poor match. I also prefer shirts that hit just below the waist or near the hips, which makes dressing easier day to day. Adult cuts tend to be too long, too wide through the chest, or both. Boys sizing, more often than not, actually fits.

I want to be clear about something, because I know where some people’s minds go when they hear that. Shopping in the boys department does not make me childish. It does not make me immature. It means I found clothing that fits my body, which is the entire point of clothing.

Most of what I wear, you would never clock as coming from the boys section. A plain tee is a plain tee. A pair of jeans is a pair of jeans. Do I have a few shirts with something a little more fun on them? Sure. But the majority of my wardrobe could pass in either direction without anyone batting an eye.

I am just a person wearing clothes that fit. Novel concept.

So about that sizing problem

Here is where it gets frustrating. Boys sizing runs differently than adult sizing, and I have made my peace with navigating both. What I have not made my peace with is that boys sizing is not even consistent with itself.

A boys size 18 is a youth size, not an adult one. But that number does not mean the same thing from one brand to the next. I actually keep a reference chart just to keep track, not because I enjoy doing extra homework before buying a pair of pants, but because the numbers mean so little on their own that I genuinely need it. A boys size 18 at Target fits differently than a boys size 18 at JCPenney. Same number, two different brands, two different fits. And that is before you factor in that sizing can shift within the same brand from one year to the next.

The number on the tag is not a measurement. It is a suggestion. A rough estimate. A vibe.

If I buy a size, that number should reflect an actual measurement. The same measurement, every brand, every year. The fact that it does not is not just inconvenient. For a lot of people, it means clothes that do not fit, returns that are a hassle, and a shopping experience that already takes more effort than it should.

And it is not just pants

For a long time, shoes were their own separate nightmare.

I wore AFOs for years. AFOs, or ankle-foot orthoses, are rigid braces that support the foot and ankle and are commonly used by people with conditions like cerebral palsy. They slip inside your shoe, which means your shoe has to be big enough to accommodate both your foot and the brace. My true foot size is a men’s 8. But for most of the years I wore AFOs, I was buying a men’s size 10 just to make them work. The last pair that actually fit over my braces were a pair of Doc Martens at a size 10. They did the job, but finding them was not easy, and shoe shopping was never simple.

I stopped wearing AFOs a few years ago. That is when I found out what size my feet actually are.

There is another wrinkle worth mentioning. Because of my cerebral palsy and the fact that I do not bear weight the way most people do, unless I am in the middle of a transfer, my feet do not sit flat. That makes it difficult to get an accurate measurement in the first place, which adds yet another layer to an already complicated process.

Eventually I found Billy Footwear, and things got a lot better. Billy’s designs shoes that zip open fully around the sides, making them genuinely easier to put on for people with a wide range of mobility needs. For the first time, I was buying shoes in a size that actually reflected my feet, not my braces, not a workaround. I receive no compensation from Billy Footwear. I just think they are worth knowing about.

But the point is: I spent years buying shoes two sizes too big because the alternative was not having shoes that worked. That is not a sizing inconsistency problem in the same way pants are. That is a whole different failure of the system. And it is exhausting to navigate both at once.

For wheelchair users, the stakes are a little higher

Back to those pants sliding off my hips in the bathroom.

That moment was funny, in the way that a lot of disability moments are funny when you are not in the middle of a transfer. But it is also not nothing.

I cannot count the number of times I have been mid-transfer into my chair and had to stop and readjust because my pants had slid down. Transfers require focus and coordination. Having to pause and hike your pants back up in the middle of one is not just annoying. It is a real disruption, and depending on the situation, it can affect your safety and your dignity.

I could wear a belt every day. Sure. Except a belt is not just something I forgot to grab. It is time and energy, and when you are a wheelchair user who needs to get to the bathroom in a hurry, that time and energy is not always available. A belt between you and the bathroom can be the difference between making it and not making it. That is not a minor inconvenience. That is a real problem.

Here is the thing, though. Most of my pants, because they come from the boys department, are either pull-on or they fasten with snaps rather than the buttons and zippers you find on adult men’s pants. That actually works in my favor. Both Target and JCPenney carry adaptive clothing lines, and I have tried a few things from each. But for my needs, regular boys department basics do the job just as well, often with the same easy-access features that adaptive clothing is designed around, and without the premium price tag. The boys department accidentally solved a problem the adaptive clothing industry charges extra to address.

Which makes the sizing inconsistency even more frustrating. When you find a department that fits your body, fits your budget, and happens to have features that make your daily life easier, you want to be able to rely on it. A boys size 18 should mean the same thing every time. It does not. And that matters.

A size should be a size. Every brand. Every year. Every time. It is not a complicated request. It just, apparently, is not how the industry works.

And until it does, I will be in the boys department at Target, checking the tag on every pair of pants, and hoping for the best.

Does inconsistent clothing sizing affect how you shop? I would love to hear how other wheelchair users and disabled folks navigate this, whether it is keeping your own reference chart, finding brands that actually work, or something else entirely. Drop a comment below.

06/06/26
The Song You Didn’t Hear

There’s a particular kind of magic that lives inside the best songs. Not the kind you notice right away. The kind that waits.

A little while ago I came across a Facebook reel from Allison Hagendorf, a music journalist and host who spends a lot of her time doing exactly what that title suggests — digging into the stories behind the songs. Her reel was about “Closing Time” by Semisonic. I thought I knew that song. Turns out I didn’t know it at all.

The Song You Thought You Knew

You know “Closing Time” by Semisonic. Of course you do. It’s the song that played at the end of every school dance, every bar night, every moment where the lights came up and the night had to end. Last call for alcohol. Last call for your broken heart. It’s a song about a night being over.

Except it isn’t. Not really.

Dan Wilson, the songwriter, wrote it about the birth of his daughter. The bar isn’t a bar — it’s a womb. “Every new beginning comes from some other beginning’s end” isn’t about stumbling out into the night looking for a ride home. It’s about a life beginning. It’s about a door opening that can never be closed again.

Two truths, living in the same song. One obvious, one hidden — and both of them real.

Wilson is from Minnesota, by the way. One of ours. And I think there’s something very Minnesotan about the whole thing — putting something that vulnerable and that enormous into a song and just letting people think it’s about last call for twenty years.

The Meaning You Bring Yourself

But here’s the thing about songs holding two truths: sometimes the writer puts both of them there on purpose, and sometimes you bring one of them yourself.

Sara Bareilles’ “Gravity” is, on the surface, about a person. A relationship you can’t escape no matter how hard you try. The pull of someone who isn’t good for you, who keeps drawing you back in even when you know better.

That’s not what I hear when I listen to it.

I actually touched on this in an earlier post — The Story of Me: A Life in Songs — where “Gravity” was already part of my soundtrack. I noted then that the song had become a conversation with my depression and anxiety. But I want to go deeper here, because that description doesn’t fully capture what it means to me.

What I hear in that song is depression itself.

Something always brings me back to you. It never takes too long.

That’s not a person for me. That’s the weight that has followed me for most of my life. The pull that never fully goes away, no matter how much work I do, no matter how many good days I string together. Depression is always there, somewhere in the background, with its own kind of gravity.

There are days when the pull is weak. Days when I barely feel it and I can move and breathe and just live my life. And then there are other days, days I don’t talk about as often, where the pull is so strong I wasn’t sure I was going to be able to break free. Days where I was deep enough in the darkness that I couldn’t see a way out.

I’m not in that place right now. Things are better. Not perfect, not cured. I want to be clear about that, because I think the “I got through it and now I’m fine” story does a disservice to the reality of how this works. But better. Manageable, with the right medication and the right support. That’s the honest version.

But when that song comes on, I still feel it. I still hear the truth it holds for me, even if Sara Bareilles was writing about something else entirely.

The Other Side of the Dark

“Angel” by Ellis Delaney lives in that same space for me — and it also appeared in The Story of Me, sitting just a few songs away from “Gravity” in my Act 2 playlist. Not a coincidence, I think.

I’ve actually talked with Ellis a handful of times, and I’ve heard them speak about what “Angel” means to them. And I’m pretty sure it isn’t what I hear when I listen to it.

What I hear is the other side of depression. If “Gravity” is the weight pulling you down, “Angel” is the reaching. That quiet, aching hope that someone will just show up and be there not to fix anything, not to have all the answers, just to sit with you in it.

I need a little company. All I need is a pat on the back.

There have been moments in my life where that was all I needed, and it felt like the hardest thing in the world to ask for.

Knowing what Ellis intended doesn’t change any of that. I’ve heard it straight from the artist, and I still walk away with my own meaning intact. That’s not me mishearing the song. That’s the song doing something Ellis may not have even known it was capable of.

The Gift Inside the Song

That’s the power of a great song. It gives you something, and then it gives you permission to find whatever lives inside it for you.

Dan Wilson wrote a lullaby for his daughter and handed the world what sounded like a bar-closing anthem. Sara Bareilles wrote about heartbreak and handed me a map of something I’d been carrying for years without quite having the words for it. Ellis Delaney wrote whatever “Angel” is really about — and handed me a lifeline on the nights I needed one.

The meaning you weren’t supposed to find might be the one that matters most.

05/31/26
Watching Shrimp Videos and Doing the Math

So I’ve fallen down a YouTube rabbit hole again. Shrimp keeping. Fish keeping. Aquascaped tanks I’ll never build. Planted nano setups with little neocaridina shrimp picking around the moss.

I had fish and shrimp for years, with the joy and the loss that come with keeping anything alive. Eventually it all came down.

Now I’m sitting here thinking about getting back into it. And the more I sit with that thought, the more I realize I’m not really thinking about shrimp. I’m doing the same quiet math I do with every hobby and every pet:

What can my body actually sustain?

Why the tanks came down

I started the hobby with a 36 gallon tank. It didn’t take long for that to feel like too much. So I downgraded to a Fluval Flex 15 gallon in the living room, then later added a Fluval Flex 9 gallon on my desk in the bedroom.

The 9 gallon happened because of a betta. One of those poor fish living in a lonely little cup at a big box pet store. You’ve seen them. Stacked on shelves in maybe an inch of water, sometimes for weeks. A whole nine gallon planted tank felt like the bare minimum I could offer.

The 9 gallon lasted a couple of years, until enough shrimp and fish had died in too short a stretch that it felt like the right time to let the tank go too. The 15 gallon hung on a few more years before the urge to rearrange and downsize finally pushed me out of the hobby altogether.

Fish tank maintenance is hard work. Even more so when you have mobility challenges.

You’re hauling water in and out. Reaching down into the tank to scrub algae. Wrestling a gravel vacuum into corners you can barely see. Lugging buckets that are either too heavy on the way out or sloshing everywhere on the way back in.

None of that is a one-time thing. It’s every week or two, forever, as long as the tank is running.

I loved having the tanks. I loved watching everyone in them.

But the cleaning slowly became something I dreaded. And a hobby you dread isn’t really a hobby anymore.

Why shrimp keep pulling me back

Shrimp tanks, especially small planted ones, are a different animal. They’re forgiving in ways fish tanks aren’t.

A well-cycled, heavily planted nano tank with shrimp basically runs itself. Light feeding. Small water changes. The plants do a lot of the heavy lifting for water quality. The shrimp themselves are tiny cleanup crews.

It’s the same hobby in spirit: the watching, the planning, the gentle obsession with water parameters. But with a fraction of the physical demand.

That matters. A lot.

The quiet pet math

It’s worth pausing here to say what I actually mean by “the math.”

If you’ve heard of Spoon Theory, you already get it. Coined by Christine Miserandino in 2003, the shorthand is this: disabled and chronically ill people start each day with a limited number of spoons. Each spoon is a unit of energy. Every task costs spoons.

Showering. Cooking. An appointment. A conversation. Cleaning a fish tank.

All of it draws from the same pile. When you’re out, you’re out. And borrowing against tomorrow has a cost.

The math is figuring out which spoons go where.

That’s what I’m doing when I think about a shrimp tank versus a fish tank. It’s what I’m doing constantly, with everything else too.

Disabled people do this math all the time. Not just with hobbies. With pets too.

Surley is my service dog. He earns his keep, and he saves me spoons. Every task he does for me is a task I’d otherwise spend my own energy on. If he weren’t a working dog, I honestly don’t think I would have a dog at all. Dogs are physical. Walking. Picking up after them. Bath time. All of it costs spoons.

The cat is easier, mostly because Jason handles the day-to-day. Feeding, cleanup, all of it. I handle the vet appointments. And when Jason’s out of town, the rest is on me too. Most days though, the cat doesn’t draw much from my pile.

And shrimp? Different math entirely.

Every fish tank I had cost spoons no matter the size. The 36 took more than the 15. The 15 took more than the 9. But all of them took, week after week, forever.

A planted shrimp tank would still cost spoons up front. Cycling. Planting. Getting the water dialed in. That’s real work.

But once it’s established, the ongoing cost drops in a way a fish tank’s never did. Top off some water. Drop in a piece of food. Watch them be weird little aliens.

That’s not laziness. That’s a real consideration.

What I’m sitting with

I haven’t decided anything yet. The tanks aren’t back up. The shrimp aren’t ordered.

But I think a small planted shrimp tank might happen. Something low. Something I can reach into without contorting. Something that’s mostly self-sustaining and mostly there for the joy of watching it.

That feels like the right kind of hobby for where my body is right now. Not the version of fish keeping I had before. A version that fits.

I’ve done this kind of right-sizing before, after all. 36 gallons to 15 to 9 to nothing. A small shrimp tank would just be the next step in the same direction.

I think a lot of disabled people end up doing this same kind of right-sizing with the things we love. Not giving them up, but reshaping them. Finding the version we can actually sustain.

That’s not settling. That’s smart.

If you have a hobby or pet, have you done this kind of right-sizing too? I’d love to hear what that looked like for you.

05/23/26
Wondering Who Would They Be
Today would have been Dempsey’s 10th birthday.

Ten. Double digits. I keep turning that number over.

Dempsey was my service dog: a silly, loud, boundlessly energetic chocolate lab who was on my right side for four and a half years. He passed away on August 18, 2022. This post lives honestly in the space of grief and loss, so if that’s not where you are today, save it for another time. No pressure.

But if you’ve ever lost someone too soon, a pet, a person, anyone you loved, and found yourself wondering who they would have become: this one is for you.

A Heart That Was Always a Little Too Big

Dempsey was diagnosed with third-degree AV block shortly after his fifth birthday. His heart’s electrical system wasn’t communicating the way it should. We got a pacemaker. The vet was reassuring: he would go on to live a normal life, with limitations, but not dramatic ones. He would still be Dempsey.

I believed that. I had every reason to.

And then August came.

I try hard not to play the would’ve, should’ve, could’ve game with what followed. It doesn’t do me any favors, and I think it does a disservice to his memory. What I know is that the pacemaker gave me more time with him. I’m grateful for that time.

I joke with my friends that he went out with his boots on. You didn’t know anything was wrong until he was gone. He didn’t feel anything. I, on the other hand, lost my best friend, my right arm, my companion, my Dempsey, my silly chocolate lab, my world.

The questions I carry aren’t about what I did or didn’t do. They’re not regret questions. They’re love questions. There’s a difference, and it matters.

The Questions I Keep Coming Back To

One shape of grief I didn’t expect was the wondering. Not just missing who he was, but genuinely not knowing who he would have become.

Here are the questions I keep asking.

Would he still be working?

Dempsey was a service dog. A good one. But at 10, would he still have been working? Would the day-to-day craziness of my life still have felt like a calling to him, or would he have looked at the situation, looked at the couch, looked at Kalo, and made a quiet executive decision to retire?

(Kalo, for the record, did not like him. Spaz before him merely tolerated him. The cats were united on this.)

Service dogs do retire. It’s a real and normal part of their lives. But I never got to watch that transition with Dempsey. I never got to see him decide he’d done enough and that a calmer chapter was waiting. That’s one of the smaller losses nested inside the bigger one.

If you want the longer version of who he was and where we started, Dempsey: Where It All Began has it.

Would he still have played like that?

When Dempsey played, the whole room knew it. He was loud. He was energetic. He didn’t do anything quietly when there was fun to be had.

Would that have mellowed at 10? Would he have found a more dignified approach to playtime, or would he still have been the dog who showed up to have a good time and made absolutely sure everyone knew it?

I think I know the answer. But I’ll never be sure. And there’s something in that uncertainty that sits with me.

Would my grief be different if he had been older?

This is the question I sit with the most.

Honestly? I think yes.

Not smaller. Not easier. But different.

When someone dies after a long life, there’s still loss. There’s still grief. But there can also be something else: a sense of a full arc, of a life that had room to unfold. Losing Dempsey at six, suddenly, after every reassurance that he had years ahead of him, didn’t have that. There was no arc. No completion. Just an ending that arrived without warning and left the rest of the story unwritten.

That kind of grief, the sudden kind, the too-soon kind, carries a particular weight. The future you expected doesn’t just disappear. It hangs there, unfinished.

For Anyone Who Has Lost Someone Too Young

Dempsey was a dog. But the “who would you have been” question doesn’t only live in pet loss. It lives in any grief where someone was taken before the story felt finished. A child. A friend. A parent too young. A companion of any kind.

If you’re carrying a version of this question, I hope it helps to know that someone else is asking it too. And that there is no wrong way to grieve someone who mattered to you.

Who would Dempsey have been at 10? I don’t know. But asking is one of the ways I keep him close. And I’m not going to stop anytime soon.

If this landed somewhere tender, there’s more on Dempsey here: A Ghost in the Wiggles is a poem that lives in a similar space, and Passengers on the Journey takes a wider look at how loss accumulates over a life.

Resources

If you’re navigating grief and could use some support, a few places to start:
- Association for Pet Loss and Bereavement: Online support groups and resources specifically for people grieving the loss of a pet, including scheduled chat support groups.
- Pet Loss Support Page: A long-running online community with support resources, memorial pages, and a Monday evening chat group for those in grief.
- The Compassionate Friends: Primarily a resource for families who have lost a child, but their broader community and materials can offer support to anyone navigating sudden or early loss.
- SAMHSA National Helpline: Free, confidential mental health and emotional distress support, available 24 hours a day, 7 days a week.
Have you ever found yourself wondering who someone you lost would have become? I’d love to hear about it in the comments, if you’re up for sharing.
05/11/26
Grieving the End of The Things We Leave Unfinished

I finished The Things We Leave Unfinished yesterday. At work.

And then I sat there staring at my computer screen for a solid five minutes, headphones still in, not moving, because I genuinely did not know what the hell had just happened to me.

Eventually I took my headphones off, got up, and took the dog for a walk. Because what else do you do? You can’t just go back to trying to focus after that.

You can’t.

The dog didn’t know why we were suddenly going outside, but he didn’t ask questions, and I appreciated that.

Rebecca Yarros. If you’ve been anywhere near #BookTok in the last couple of years, you probably know her from the Empyrean series, Fourth Wing and everything that followed. That’s how I found her too.

And if you’re part of the disability or chronic illness community, there’s a good chance she hit you a little differently than she hit everyone else.

Yarros has Ehlers-Danlos syndrome. She’s talked openly about it, and she built that lived experience into the Empyrean series through her protagonist Violet, whose chronic illness is woven into the story not as a plot device, but as just part of who she is.

For a lot of us in the disability community, that kind of quiet, matter-of-fact representation is rare enough to stop you in your tracks. It stopped me. So I already trusted this author with something before I ever picked up The Things We Leave Unfinished.

I thought I was prepared for what she could do to me.

I was not prepared.

Dual timeline. WWII love story tangled up with a present-day one. If you know, you know. If you don’t, go read it, and then come back here, because I need to talk about it with someone who’s been through it.

A note before we go further: this post has vague spoilers. I won’t be laying out plot points in detail, but if you’re good at reading between the lines, you may be able to piece some things together. You’ve been warned. Go read the book first.

Seriously.

Go.

This Isn’t the First Time a Book Has Done This to Me

The last time a book wrecked me like this, I was sitting on my aunts’ kitchen floor.

I was in college. I had been over to their place with the last Harry Potter book, told them I couldn’t leave to go back to my dorm until I finished it, and proceeded to plant myself on the kitchen floor and read. For what felt like hours. Deeply, completely, embarrassingly immersed right up until the last page turn.

And then I just sat there. On the floor. Not ready to leave that world. Not sure how to go back to normal life after living so long inside that one.

That’s a particular kind of loss, not just the end of a story, but the end of a relationship with a story. The kind that’s been woven into actual years of your life. I filed that feeling away, figured it was specific to Harry Potter. To the scale of it. The years of it.

And then yesterday happened.

The Normal Kind of Grief

There’s a particular hollow feeling that shows up when you finish a book you loved. It’s not sadness exactly, or it is, but it’s mixed up with other things. The story was still living in my head all day. I’d think about a scene between Scarlett and Jameson and feel warm about it, the way you do, and then remember: oh. There’s no more. That’s all there is.

I miss the characters. Not in a hedged, I-know-they’re-fictional kind of way. Just, miss them. Full stop. I spent hours living alongside these people. I knew how they talked, what they were afraid of, the way love looked for them under impossible circumstances. And now they’ve stopped existing in any new way.

That’s the ordinary grief of a good book ending. I know it well. But this one had something extra.

The Revelation Kind of Grief (Here’s Where It Gets Vague)

There’s a specific kind of hurt that comes when a story delivers a revelation near the end that reframes everything you thought you knew. Not a trick. Not a cheap twist. The kind that’s been earned, slowly, carefully, and lands with a weight that almost knocks you flat.

That’s what happened near the end of this book.

I found out something about a character I had loved, trusted, and grieved alongside the whole time, something that changed who I understood her to be. Entirely. The character in the book who receives this news reacts in a way that mirrored exactly what was happening in my chest in that moment. I felt it right alongside her.

The grief doubled. I had to mourn the version of the character I thought I knew. Then mourn the truth. Then sit with the fact that the truth was, in its own way, even more heartbreaking than anything I’d braced for.

It’s a strange feeling, retroactive grief. Going back over everything in your head through a new lens. Realizing the sacrifices were bigger than you understood. The losses, deeper. The love, somehow even more devastating for it.

And I’m sitting at my desk at work going: holy crap. What the hell just happened.

The Audiobook Factor

Here’s the thing I didn’t fully account for going in: I listened to this book. And the narrator had a fairly decent English accent for the historical timeline: Scarlett, the letters, all of it. Which sounds like a small detail, but it wasn’t.

There’s something about a voice in your ear that collapses the distance between you and a character in a way that reading off a page doesn’t always do. I wasn’t just reading about Scarlett and Jameson, I was hearing them. Their world had a sound. And when that world ended, it didn’t just close like a book. It went quiet. All at once. In my ears.

One second I’m in WWII England. The next I’m just… at my desk. Staring at a screen. Surrounded by the ordinary sounds of my ordinary day. The whiplash of that is something else entirely.

Returning to Real Life, Reluctantly

Coming back to real life after a book like this always takes a minute. A story is its own world with its own weather, and you get used to that weather. Real life doesn’t have the same architecture. Problems don’t resolve by the final chapter. The pacing is all off.

Sometimes you need a walk. Sometimes you need to sit on your aunts’ kitchen floor for what feels like an hour. Sometimes you need to stare at your computer screen until the feeling settles enough that you can breathe normally again.

All of those are valid. All of those are just what it looks like when something got through.

That’s What a Good Book Does

I think the grief I’m carrying right now is actually a kind of gratitude in disguise. You don’t grieve stories that didn’t matter. You don’t lie awake thinking about characters who didn’t get under your skin.

This one got under my skin. So did Harry Potter, all those years ago on that kitchen floor. And I think I’m glad, genuinely glad, that I’m still capable of feeling it. That a voice in my ear, telling me about people who never existed, can send me out the door mid-workday just to walk it off.

The things we leave unfinished. Not just in the novel, but in the feeling it leaves behind. Some books close and you’re done. Some books close and you keep carrying them for a while, working something out.

This is one of those.

I’ll be okay. I just need a few days and probably something lighter to listen to next. (Suggestions welcome. Something with nobody dying would be great, thanks.)

Have you ever finished a book, or an audiobook, and just needed a minute? What sent you to the floor? Come sit with me.

Oh, and one more thing, because the universe apparently isn’t done with me yet: Lionsgate recently announced they’re adapting The Things We Leave Unfinished into a feature film. So I’m going to need a minute to process that too. If you need me, I’ll be on the floor.

05/01/26
You Only See a Snapshot: That’s Not Enough to Judge
Scroll through Facebook on any given day and you’ll find it: a parent sharing a moment with their child, and buried in the comments, a pile-on. Someone calling them lazy. Someone asking why they haven’t “fixed” it yet. Someone offering unsolicited advice wrapped in thinly veiled judgment.

It happens constantly in disability parenting spaces. And it needs to stop.

The People I Follow And Why This Matters to Me

I want to be clear upfront: I follow a lot of autistic people and autism families on Facebook, and I do it because they’re genuinely worth following. The autistic people I know personally are cool, funny, thoughtful, and totally normal.

They are just navigating a world that wasn’t really designed with them in mind. The families I follow online are doing the same: showing up every day for their kids, sharing the good moments and the hard ones, and being more honest about their lives than most people are willing to be.

Some of those families have kids with severe autism. And some of those kids are in diapers or pull-ups. When I see that, I don’t see failure. I see a family that’s figured out what works.

When strangers on the internet see it, sometimes the reaction is very different.

What People Don’t Understand About Severe Autism and Potty Training

Potty training isn’t just about learning a habit. It involves sensory awareness, the ability to recognize and interpret body signals, motor coordination, communication, and the executive function to stop what you’re doing and act on that signal in time. For kids with severe autism, any or all of those pieces may be genuinely, neurologically difficult, not because no one tried, but because the wiring works differently.

For some kids, traditional potty training isn’t a realistic goal at least not on anyone else’s timeline, and maybe not ever in the conventional sense. Pull-ups and diapers in those cases aren’t a sign that parents gave up.

They’re often the result of years of trying, working with therapists, adjusting approaches, and ultimately landing on what actually preserves the child’s dignity and the family’s ability to function.

When someone fires off “have you even tried potty training them?” in the comments. They’re not helping. They’re showing how little they understand about what that family has already been through.

Pull-ups and diapers aren’t a sign that parents gave up. They’re often the result of years of trying, working with therapists, and ultimately landing on what actually works.

I Have Some Skin in This Game, Too

I’m not writing this from the outside looking in. I have cerebral palsy. CP affects muscle coordination and spasticity throughout the body, and for me, that includes my bladder.

What that looks like in real life: there’s sometimes no gradual warning. One moment everything is fine. The next, my bladder is spasming and I have a very short window, sometimes no window, to get to a bathroom. It’s not a matter of planning better or paying more attention.

That’s just how spasticity works.

So yes, I use pull-ups. It’s practical. It’s smart. I’ve made my peace with it and I truly don’t care what anyone thinks.

I’m sharing this not to make the post about me, but because I want to be honest: I understand something about making practical choices around a body that doesn’t always cooperate. And I understand what it feels like to have those choices be nobody’s business but your own.

You’re Only Seeing a Snapshot

Social media gives you a moment. One frame from a film that’s been running for years.

You don’t see the context. You don’t see what was tried before. You don’t see the appointments, the therapy sessions, the late-night research, the hard conversations, the small victories that don’t look like anything to the outside world but meant everything to that family. You don’t see the grief, or the resilience, or the way a parent has quietly rewritten their definition of progress a hundred times over.

What you see is one post. One photo. One moment.

And yet that’s enough for some people to render a verdict.

What to Do Instead

This isn’t complicated. It just takes some intentional effort:
- Pause before commenting. Ask yourself: does this person need my input, or did they just share something from their life?
- Ask instead of assuming. If you genuinely don’t understand something, curiosity is more useful than criticism.
- Believe people when they say something is hard. You don’t have to fully understand a situation to respect that someone is doing their best in it.
- Amplify instead of critique. If you see a disability parent or a disabled person sharing their reality honestly, share it. Normalize it. Help build a space where people feel safe being real.
The World Could Use More of This

My original thought was simple: if there were more people willing to support instead of judge, the internet — and honestly, the world — would be a better place.

I still believe that. Disability doesn’t come with a handbook, and every family’s path — every person’s path — looks different. The least we can do is show up with some grace for the moments we don’t fully understand.

You only see a snapshot. Make sure the story you’re telling yourself about it is worth telling.

Written by someone who knows this isn’t theoretical. 💙
04/12/26
Training for a New Winter Olympic Game (Apparently)

Winter has officially came back to Minnesota which means one thing: absolutely nothing is predictable.

This morning, I confidently took the dog down the driveway for his usual morning bathroom break. The descent? Smooth. Controlled. Graceful, even. I briefly considered that I might have a future in the Winter Games.

The return trip, however, was less inspirational documentary and more blooper reel.

Halfway up the hill, my wheelchair wheels began spinning with great enthusiasm and zero productivity. Snow spraying. No traction. Dog already finished with his event and waiting at the top like an unimpressed judge.

In that moment, it felt like I was personally qualifying for the uphill event at Winter Games in Milano-Cortina.

However, instead of international glory, I was competing against three inches of fresh Minnesota chaos.

The thing about winter here is that it doesn’t gently arrive. It shows up overnight, rearranges your plans, and turns a simple dog outing into an endurance sport.

In hindsight, I could have waited until the snow stopped.
I could have waited for the hill to be cleared.

But where’s the Olympic spirit in that?

Gold medal in effort.
Silver in spinning.
Bronze in decision-making.

And it’s only February.

02/19/26
Still Becoming, Still Moving Forward

A Season of Reflection

I know I have not written in a while. The end of the year is always been difficult time of year for me. It is a season of reflection, whether I want it to be or not.

There is a line from Have Yourself a Merry Little Christmas that comes back to me every year:

Faithful friends who are dear to us
Gather near to us once more
Through the years we all will be together
If the fates allow.

The older I get, the heavier that line feels. It holds gratitude and truth at the same time. Some people are still here. Some are not. None of it is guaranteed.

That song carries personal history for me. Have Yourself a Merry Little Christmas was the first song I sang on our family Under the Tree holiday CD. It was the very first song I sang. This was back in 1999. It has quietly followed me ever since.

A lot of people send out polished Christmas letters listing accomplishments and milestones. I have never been good at that. This year brought change, not trophies, including quieter, more personal ones.

Still Becoming

This past spring, I wrote about the idea of always becoming. It was about growth that does not arrive with neat endings or clear resolutions. That theme followed me all year, often in uncomfortable ways.

Part of that becoming meant choosing honesty. I wrote about going by the name Alyn, not as a reinvention, but as recognition. Outwardly, it was a small change. Yet, it reflected something deeper about my self-understanding. It also showed how I want to move through the world.

Partnership and Home

Jason and I are still steady. We passed fifteen years of living together, and at some point you stop counting.

It is like age. I turned forty-two this year, technically, but numbers matter less than continuity. What matters is that we are still here, still choosing each other, even when things are heavy.

The animals are still holding strong. Surley remains happy, eager, and ready to work. Kalo, who seems determined to live forever, is slowing down but still very much himself. He is older now, a little stiffer, a little clingier. He has started sitting with me more, something that once belonged exclusively to Spaz. I do not question it. I take it for what it is. Even when I am playing video games, and he is draped across my arm while chaos unfolds on the screen. I feel grateful for the quiet companionship.

Work and Worth

Work continues to be complicated. I am still employed, and I enjoy what I do and the people I work with. The problem is consistency. Months can pass without shifts. Disability income keeps me afloat, but barely. Earlier this year, I wrote about being more than qualified and still overlooked. That experience is not abstract. It lives in unanswered applications and interviews that go nowhere. It is frustrating, but it is also familiar.

There is also the longer view. I also wrote about moving from being a visible symbol to an invisible adult. The attention fades. The needs do not. That reality has shaped how I have moved through this year, even when I did not name it outright.

After months of trying to find something more reliable, I started working with vocational rehabilitation. I have had interviews. Nothing has landed yet. Maybe the new year will bring something different. Maybe it will not. I am still trying.

Uncertainty and Care

There is uncertainty ahead. Jason’s vision remains a concern. His degenerative eye condition means there may come a time when he cannot work. If that happens, our financial reality could change dramatically. It is one of the key reasons I have been more actively looking for work.

Jason has carried more than his share this year. He lost his father late this summer, a loss that reshaped everything. On top of that came serious eye complications unrelated to Usher syndrome. Surgeries followed. Complications followed those. We talk about it daily. I go to appointments. I listen when frustration takes over. Earlier this year, I wrote about passengers on the journey, and that idea feels especially true now. Support is often quiet. It looks like showing up and staying.

Love, Loss, and What Remains

Earlier this year, I wrote about quiet reminders, the small things that steady us when life feels loud. That idea has stayed with me. As the years pass, the awareness of who is still here and who is not becomes sharper. None of it is guaranteed, and that truth carries more weight than it once did.

I think about those who remain, the ones who show up and stay. I also think about those who are gone. Earlier this year, I wrote about holding onto love after loss. Grief does not replace love. It reshapes it. That truth lives with me when I think of my friend Colleen. I also think of Jason’s dad Harold. There are so many people I never had enough time with.

I think about Dempsey. Three years have passed, and I still miss that stubborn, energetic chocolate Labrador. Surley is here and wonderful, but loving him does not erase the love I still carry for Dempsey. There is not a day that goes by that I do not think of my chocolate boy.

This year has been a lot. I am not complaining. Life does not ask permission before it happens. We deal with what is in front of us and keep moving.

Writing, Play, and Practice

Not everything I wrote this year was heavy. I allowed myself a lighter side project, telling parts of my story through music in a life in songs. It was playful and nostalgic, but also revealing. Music has always been a quiet companion. Revisiting it reminded me that reflection does not have to be solemn to be meaningful.

I also took a writing class this year. The pieces that came from it gave me permission to experiment and wander. The pieces were tributes to both Dempsey and Surley. They were imaginings of what Kalo and Surley would do if left alone. They reflected a traveler in a journey through a wasteland. Finally, they were quiet explorations of a life well lived. Writing them reminded me why I write at all. I write not only to educate and inform. Sometimes, I write to process, remember, and imagine.

Choosing Quiet

I have taken a slight step back from social media. I wrote about the tug-of-war between thinking and speaking. That awareness has stayed with me. Not every moment needs commentary. The people who matter know what is going on, and that is enough.

I do not know what the coming year will bring. I know there will be uncertainty, and I know there will be moments of steadiness too. Time spent reflecting in the woods taught me that clarity often comes when noise fades.

For now, I am still here. We are still here. I will keep moving forward. I carry both the past and the present with me. I am still becoming. I am still rolling down the road as best I can. I will move forward together, if the fates allow.

12/26/25