Tag: Community & Connection

Reflecting on the small yet meaningful ways we can create connections with others in everyday life.

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
An Adventure in Getting Home

The commute home was an adventure, and it started before I even left work.

Paper Over the Button

Just this morning, my office installed an automatic door, so all I have to do is push a button to get in and out. Well, almost. When they installed it, they told me that for now I’d have to push the button and turn the handle, because the button isn’t set up to work with our security lock yet. The door won’t unlatch automatically, so I have to trigger the latch manually.

I don’t know what happened, but on my way out I discovered someone had put a piece of paper over the button no note, no explanation. That made it extremely difficult for Surley to push it, so I had to do it myself. If it’s still there tomorrow morning, I’m taking a picture and sending it to my supervisor and our ADA specialist to investigate.

A Good Conversation at the Bus Stop

While I was waiting for the bus, I had a nice chat with a gentleman who trained service dogs while he was in prison. Can Do Canines, the organization I got my service dogs through, has used prisons in both Minnesota and Wisconsin to train their dogs. He didn’t say where he trained or which dogs, but it was great to hear about a formerly incarcerated person having a life-altering experience working with service dogs.

The Stroller in the ADA Seating

The bus was a little crowded when we got on, and there was a stroller parked in the ADA seating across from me. Unfortunately, Metro Transit allows this instead of asking the parent to fold up the stroller and hold their child. I truly believe this is a disservice to everyone who needs those dedicated spaces. Being a mother doesn’t make you more special or more deserving of seating specifically designated for people with disabilities or limited mobility.

The wheelchair seating on Metro Transit buses is a little cramped, and Surley is a larger dog, so keeping him fully inside the designated ADA area is sometimes a challenge. He’ll often lie in the aisle, and I move him as needed when people have to get through. Usually this is not a big deal. This time, though, the mom across from me was throwing a hissy fit because she thought Surley was bumping into her stroller. I did everything I could to keep him away from it, and from where I sat he may have been brushing the stroller, but he was clearly not bumping it. She was getting loud and upset, and I was thankful we were getting off at the next stop because if she had laid a hand on him, I would have immediately called the police. In the state of Minnesota, it is a crime to harm a service dog or interfere with its ability to do its job (Minn. Stat. § 343.21, subd. 8a) — and depending on the harm done, it can be charged as a felony.

The Walk Home

The adventure continued on the walk home from the bus stop. Surley had to poop, and he has a talent for picking the wrong time and place — this time, right in front of a nearby apartment building’s parking garage entrance. I try to be a good dog owner and clean up after him, but as I was picking it up, a car pulled up trying to get into the garage. I moved out of the way, and then a second car came out of the garage and ran right over the poop. Oh well. I tried to be a good person.

We were just feet from our building when a man came down the sidewalk with his dog — WITHOUT a leash. I pulled Surley to the edge of the sidewalk and put myself between him and the other dog. Even frazzled from the events of the walk home, I kept my calm and informed the man that his dog needed to be on a leash. He didn’t seem to care. But I knew that if his dog came after Surley, I was going to run it over with all 400 pounds of my wheelchair. And Minnesota law is on my side here: if you let your dog run uncontrolled and it harms a service animal, that’s a crime (Minn. Stat. § 609.226, subd. 4) — and the court must order you to pay restitution covering not just the vet bills, but the handler’s lost income, transportation, temporary replacement services, and even the cost of replacing or retraining the dog.

The rest of the evening, thankfully, was uneventful.

Your Turn

Service dog handlers: have you ever had to defend your dog’s space — on the bus, on the sidewalk, or anywhere else? And if you don’t use a service dog, did you know these protections existed? Tell me about it in the comments — I’d love to hear how you’ve handled these moments.

08/13/26
Dads

Father’s Day has a way of making you think. Not just about the dad you have, but about all the different shapes a dad can take.

I’ve been lucky. My circle is full of people who have been a dad to me in one way or another: some by blood, some by choice, some just by showing up when it counted. And today, I find myself thinking about all of them.

My own dad and I: we’re complicated.

He’s a quiet man. Reserved. Not the type to wear his heart on his sleeve. But strong: genuinely, physically strong. Growing up, he was the one who could lift me up onto the horse so I could ride just like everyone else. No fuss, no hesitation. He just did it. That meant more than I probably ever told him.

But the man is also a little squeamish.

I remember the time I cut open my chin so badly you could stick your finger through my lip like a fish. My dad: tough guy, farm strong, lifts his kid onto horses without blinking: had to sit down. Got a little queasy. I love that about him, honestly. It’s one of the few cracks in the armor that ever showed.

Dad, if you’re reading this: you know I tell this story with love.

The other one I remember was when my grandmother passed away. His mother. It was one of the very few times I ever saw him cry.

That’s the thing about reserved people. The emotion is in there. It just needs something big enough to bring it out.

We’re not close in the way some people are close with their fathers. We don’t talk every day. Our relationship has had its rough patches, and I won’t pretend otherwise.

But he’s here.

And that matters more than I used to let myself admit.

I’ve watched friends lose their dads. I’ve seen the weight of that absence on Father’s Day: the empty chairs, the forced smiles, the quiet grief that doesn’t go away. I know that one day, I’ll be in that place too.

One day I won’t have mine.

So today, I choose gratitude. For the complicated. For the quiet. For the distance that still somehow holds love in it.

Dads

Dads are strong.
Dads are brave.
Dads are the quiet ones:
reserved, contained, restrained.

Dads are strong enough
to lift you on a horse,
to make you feel like everyone else:
steady, sure, of course.

Dads don’t always say it.
Sometimes they never do.
But love doesn’t need a lot of words
to still come shining through.

Dads are a little squeamish
when the blood starts flowing free.
He had to sit down for that one:
my chin split, lip like a fish on the sea.

My dad and I,
we’re not always close.
Our relationship is complicated:
the kind that teaches you the most.

But he’s still here.
And I still call.
And somewhere in that quiet space
is love enough for all.

I know what it means to have him.
I’ve watched my friends say goodbye.
I’ve seen the empty chairs on days like this
and heard the muffled cries.

I saw him cry once: maybe twice.
When grandma left this earth.
That crack in all that quiet strength
showed everything it’s worth.

One day I won’t have mine.
That thought sits heavy, true.
So today I choose gratitude:
for all the complicated too.

Dads are many things.
No single mold or measure.
I am one of the lucky ones:
and that I will always treasure.

Happy Father’s Day, Dad.

If you still have your dad: call him. Even if it’s complicated. Even if you don’t know what to say. The call matters more than the words.

And if you don’t: I see you today. The empty chair is real, and so is the love that filled it.

To every kind of dad out there: happy Father’s Day.

What does Father’s Day look like for you? I’d love to hear in the comments.

06/21/26
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
When the Bus Doesn’t Pull Up: Advocating from the Back of the Bus

So this actually happened last Saturday, and I’m just now sitting down to write about it because life has a way of doing that. But it’s been living rent-free in my head all week, so here we go.

Jason and I went to the Minnesota United game. Simple enough, right? Except it wasn’t.

The green line was down for maintenance, so Metro Transit had shuttle buses running between downtown Minneapolis and downtown St. Paul. Shuttles on game days tend to get packed, so we decided to skip it and just take the 94. I take the 94 to work most days. I know the 94. The 94 and I are old friends.

Or so I thought.

Going: When the Bus Just… Doesn’t

When the 94 pulled up to our stop, it didn’t actually pull up. It stopped in the street. The driver leaned out and shouted that he was full, that he couldn’t accommodate me.

Does that happen? Yes. Is there much I can do about it in the moment if a driver says the bus is full? Not really. So I took him at his word. Everyone else at the stop stepped off the curb and boarded. Jason and I watched the bus go.

We ended up taking the green line shuttle after all. We made it to Allianz Field just in time for kickoff. I was a little annoyed, but the game was good, and I shook it off. Soccer helps.

Coming Home: A Different Story

After the game, I figured the shuttle would be the easy option heading back. It was not easy.

The shuttle loading area was right next to where a CVS had been torn down a few weeks earlier. Construction barricades were everywhere, and they were blocking the sidewalk. I couldn’t get through. I couldn’t load onto the shuttle. Just like that, the “easy” option was off the table.

Since I don’t usually take the 94 from downtown St. Paul, I wasn’t entirely sure where it picked up. Cue some finagling, some frustration, and, honestly, a little aggravation on Jason’s part too. But we found it.

This Time, I Spoke Up

Here’s where it got interesting. The same scenario played out: the bus wasn’t pulled to the curb. But this time, I decided to speak up. A little louder. A little more firmly.

The driver seemed to think I was just going to hop off the curb into the street. Power wheelchairs do not hop curbs. A few people nearby offered to lift me. They meant well, genuinely. I politely declined. One wrong move and someone gets hurt, I get hurt, or my chair gets damaged. None of those are great outcomes.

The driver eventually maneuvered the bus to the curb and loaded me on. I don’t know if he was having a rough day. Game days are chaotic, the green line was down, and everyone was stressed. I get it. But it still needed to happen, and it happened because I asked for it to happen.

Oh, and then the bus had a mechanical issue and had to pull off on the freeway. Which has genuinely never happened to me in all my years of riding Metro Transit. So that was a thing.

Even Advocates Need a Nudge Sometimes

Here’s what I keep coming back to: even those of us who do this work, who talk about disability rights, who know our rights, who have the language, sometimes freeze up in the moment. Sometimes we’re tired. Sometimes we’re just trying to get home after a long day and we don’t want to make it a whole thing.

I needed a gentle nudge from Jason to speak up on the way home. And that’s okay. Advocacy isn’t a switch you flip on and it stays on forever. It takes energy. And sometimes it takes a partner, literally or figuratively, reminding you that you’re allowed to take up space.

Even if that space is at the back of the bus, waiting for the driver to pull six feet closer to the curb.

We got home. Minnesota United lost 0-1 to LAFC. And I’m still thinking about that ride.

Have you ever frozen up in a moment when you knew you needed to speak up? What helped you find your voice?

As for today: no bus rides on the agenda. Minnesota United is playing the Columbus Crew in Columbus tonight at 6:30, so I’ll be watching from the couch.

Good thing too, because Metro Transit is doing more maintenance on the green line this weekend. Shuttle buses again. I’ll be staying home, thanks.

05/02/26
What Do You Want Your Story to Say

Not too long ago, I learned that someone I went to high school with had suddenly passed away.

We weren’t close. Growing up, they lived on the next street over from me. Both our families were into horses, so we spent time together as kids at horse shows and other horse related things.

But the way it goes in small towns, we grew apart as we got older. By the time we were adults, we were little more than names in each other’s memories.

And now they’re gone.

The news hit differently than I expected. Something about the suddenness of it made me stop and wonder. If something happened to me tomorrow, what would my story say? Would the people who knew me, even a little, understand who I actually was?

I’ve thought about death before. Living with a disability means you sometimes have a different relationship with your own mortality than other people do.

You think about who will advocate for you if you can’t advocate for yourself. You think about legacy in ways that feel both practical and deeply personal.

But I had never actually sat down and tried to put my story into words. Not like this.

So I did. I wrote my own obituary.

It felt strange at first. A little uncomfortable. But somewhere in the middle of it, it became something else entirely. It became clear.

Writing it forced me to ask: what actually matters? Not what sounds good, not what looks impressive on paper, but what is true about who I am and what I’ve cared about.

The answer wasn’t my job titles. It wasn’t my degrees. It was the people, the animals, the moments, and the work that filled the space in between.

The first version came out long and traditional. The kind of obituary you’d find in a newspaper. But it felt like mine. Here’s a piece of it:

Alyn spent their childhood surrounded by animals and found a particular kind of freedom on the back of a horse named Comanche. Those rides, Alyn often said, were the times they forgot their limitations entirely.

Alyn was a service dog handler for much of their adult life. Their first partner, Dempsey, was a chocolate Lab who helped Alyn step into spaces that once felt overwhelming; less than three weeks after meeting, they rode an Amtrak train to Chicago together. After Dempsey passed in 2022, Alyn was matched with Surley, a yellow Labrador Retriever trained by Can Do Canines. Those who knew Alyn knew Surley too, a steady presence at the office, at Allianz Field, and at the campsite.

Alyn believed in direct conversation, deep friendships, a good cup of Caribou Coffee, the joy of soccer, and time in the woods around a campfire with good people. They believed that accessibility is not a courtesy; it’s a right. And they spent their life proving that a person can come from a place that wasn’t built for them and still build something worth leaving behind.

It was a good first attempt. But it still felt like a summary more than a story.

That’s when I started thinking about a movie I saw many years ago when I was a kid called With Honors. Near the end, a character named Simon Wilder leaves behind an obituary he wrote himself. It’s short. It doesn’t list his accomplishments. It captures who he was in a handful of true sentences, and everyone named in the survived-by section gets a single defining characteristic instead of just a title or a relation.

“He saw the world out of the porthole of a leaky freighter, was a collector of memories, and interrupted a lecture at Harvard.”
Simon Wilder, With Honors (1994)

That stuck with me.

So I tried again. I tried to write something that felt less like a record and more like a truth.

It’s harder than it sounds. You can go through a hundred versions and never feel fully satisfied. You second-guess every word. You wonder if you’re being too honest or not honest enough. You realize how strange it is to try to sum up a life while you’re still in the middle of living it.

But here’s where I landed, at least for now:

In Loving Memory

Levi “Alyn” Dokken

Born: November 17, 1983 Death: ________

Minneapolis, Minnesota

Alyn Dokken came into this world small and fierce, and proceeded to prove everyone wrong for the rest of his life.

He grew up on a farm in Benson, Minnesota, that wasn’t built for him, in a small town that didn’t always know what to do with him, with parents who loved him and were still figuring things out and a sister he fought with almost daily. He rode a horse named Comanche as if he had no limitations at all.

Alyn knew Benson wasn’t the whole story, so he hit the road; first to Hutchinson, where he started to find his footing, then to Minneapolis, where he found his voice.

In his travels, Alyn met people who saw him. He grew. He stopped asking permission and started just doing it: for himself, for his service dogs, for every disabled person who was told the table wasn’t theirs. He advocated for disabled people, visibly disabled and invisibly disabled, in rooms that were not always ready to hear it.

Alyn co-founded AccessiLoons, the first accessibility-focused supporter group at Allianz Field.

He started a blog he’d been thinking about for years because he wanted a place that was truly his and where he didn’t have to answer to anyone else.

He spoke for Can Do Canines wherever he was: in front of crowds, in front of classrooms, in front of a three-year-old who just wanted to give his dog their ice cream cone. He explained what a service dog is and what a service dog isn’t — that under the vest is a living, breathing creature, silly and lovable, and nothing like a machine. He was lucky enough to know two of them. Lucky enough twice.

He made choices he would make differently, and not one of them did he regret.

Alyn is survived by his family: his partner, who has been a steady presence for over sixteen years; Dad and Mom, who lifted him into the truck and onto the back of horses never once letting it slow any of them down; his sister, who even though they had a rough childhood always had his back no matter what, and her husband, who married into the chaos willingly; C, G, and A, who still have the whole road of life ahead of them; many aunts and uncles who once said, “He will ride the elephant”; Jens, Kat and their boys T and D, who became family without ever being asked; and by Surley, who still has work to do.

Alyn was preceded in death by his grandparents, who loved him unconditionally; Dempsey and Spaz, who were constants, one at his feet, one in his lap, and who taught him that the best companions don’t ask for much and give everything.

Keep rolling, keep exploring, keep speaking your truth.

Is it finished? Probably not. I’ll likely come back to it and change a word here, move a sentence there. That’s the thing about trying to tell your own story — there’s no final draft while you’re still writing the chapters.

But the exercise itself was worth it. It reminded me of what I actually care about. It reminded me who I actually am. And it reminded me that the story I’m living right now is the one that will be told later.

And I think that’s worth something.

04/25/26
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