Category: Life & Perspective

Personal experiences, reflections, accessibility topics, and disability advocacy.

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
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
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
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
That First Sip

It’s Saturday morning. I’m sitting in the early sunrise, coffee in hand, watching the light come up. I added a splash of Irish cream, and the second it hit the cup — that smell. Warm. Sweet. Fragrant. That first sip was divine. Smooth. Relaxing.

And then, not long after, it went to my head.

That’s when the realization hit me.

I don’t like this feeling.

Don’t get me wrong I love the smell. I love the taste of Irish cream, of a cold beer, of a good glass of wine. I genuinely enjoy those things. What I don’t love is what alcohol does to me after. The unpredictability. The way I lose the thread of control I work so hard to hold onto.

I’ve talked before about my struggles with alcohol. For a long time, it was a crutch — a way to cope with hard situations and even harder feelings. Press the pain down. Don’t sit with it. Don’t feel it. And there’s this social current that pulls at you too. You’re at a party and drinking is just… what you do. Non-alcoholic options are rare. If they exist, they are usually an afterthought. They sit in the corner next to the ice bucket.

The problem is, once I start, sometimes I can’t stop. One becomes two. Two becomes three.

I remember one New Year’s Eve. I was hanging out with my best friend, and a mutual friend was there earlier in the evening. He started drinking, so I started drinking, because that’s how it goes, right?

You keep up. You match the energy. By the time the actual party started, I was already drunk. I don’t remember making it to midnight. I don’t remember the countdown, the cheers, any of it.

What I do remember is waking up sometime after midnight on my best friend’s couch, disoriented, and getting sick. I threw up all over the blanket they’d so kindly tucked around me while I was passed out. I remember stumbling to their bedroom in the dark, waking them up, letting them know what had happened.

They got up and helped me clean everything up — no complaint, no judgment, just quiet kindness. That’s what a best friend does.

The next morning I went back to my aunt’s house, where I was staying at the time. She asked how I was feeling. I told her I was sick.

That was a lie. I was hungover.

I don’t tell that story to be dramatic. I tell it because it’s real. I think some of you reading this know exactly what that night feels like. There is the shame and the confusion. Then comes the cleanup and the lie you tell the next morning. It’s easier than the truth.

Here’s the complicated part though: I don’t actually want to give up the experience of drinking.

I want to come home after seven-plus hours of staring at a computer screen. Then, I want to crack open a cold beer. I want to just taste it — the cool, the flavor. It’s that exhale of a hard day finally being done. I want a glass of red wine and that first hit of aroma before it even touches my lips. I love those things. I genuinely do.

That’s a big part of why I’ve been leaning into non-alcoholic beers. Some of them are genuinely terrible — I’m not going to sugarcoat that. But I’ve found a few brands I actually like, and honestly? They give me exactly what I’m after. The ritual. The taste. The reward at the end of a long day. Without the part where I lose myself.

For the times I do drink alcohol, I’ve had to set my own rules. Weekends only, when I have no commitments, nowhere to be, nothing that requires me to be fully sharp.

During the week, almost never. Maybe a small pour of Irish cream with an evening snack. Maybe a single glass of wine for a birthday or a work event. Small. Intentional. Bounded.

Because I’ve learned I have to be intentional about it. The alternative is not pretty — and I’ve lived the alternative.

As I’m writing this, I’m already on my second coffee with Irish cream. Did I want it? Yes. Did my brain tell me to go pour another? Absolutely. Did I listen when I probably shouldn’t have? …Also yes.

Self-control is something I’ve wrestled with for a long time — and it goes way beyond alcohol. If there are cookies in the house, I hear them calling from the kitchen. Chips, candy, M&Ms — I must portion things into a bowl physically. I tell myself out loud: this is what you get. Because I know what happens if I don’t. I’ve eaten an entire sleeve of Thin Mints in one sitting without a second thought. No hesitation. No regret — until later.

I don’t totally know where this post was supposed to go, honestly. It started as a 6 AM realization over a cup of coffee on a quiet Saturday morning. I just knew I had to get it out. I needed to release it into the universe, into words, somewhere outside of my own head. Maybe something here clicks for you. Maybe it’s just me talking to myself in public, which, let’s be honest, is what blogging is anyway.

But I’ll leave you with this: what do you struggle with? Is it alcohol? Sugar? Gambling? Something else entirely? How do you cope with it? How do you draw your lines and actually hold them?

I’d genuinely love to hear.

03/28/26
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