another year older and wiser,
another year homeless



I haven't had both the free time and the wherewithal to work on my website in a while. Or my other hobbies.

A lot has changed since I last worked on this page.

I sit in a friend’s kitchen in Ann Arbor, Michigan, my laptop and bluetooth keyboard setup at a messy kitchen table across from Bel, engrossed in the group chat on his phone. Between us sits a bouquet of crocheted orange and yellow flowers. The glass door to the deck is cracked as we slowly burn through a bowl of weed, and from the black of the unlit yard comes the night chorus; crickets, a different kind of katydid than the ones we had in Manistee with a song of a slightly different pitch, and some kind of tree frog with a raspy, staggering call. Behind it, the familiar old whine of the highway, ever-present in most places we go, though even here, in the heart of the city, its muted by the numerous trees and thriving gardens of this area.

My boyfriend, Bellamy, and I have been together for just over a year, and homeless together for just as long— officially, now that his 25th birthday has come to pass. We were camping for his birthday last year when his “friend” threatened to burn his things and told him not to come back, the day before he was set to start a new job. Three weeks prior, Bel's mother legally evicted us both for being transgender and queer; Bel's friend took him in with a promise never to separate him from his cats, a promise broken in just three weeks, and on his birthday, no less.

We moved into our car that day, and we spent the next two months living in the national forest. We quite enjoyed it, truthfully; it was two months of feeling like we were really at home, in our own space, even without our beloved pets. Two months we spent happily basking in the golden dappled sunlight of the slowly changing leaves, tending the home fires, taking slow, meandering drives to the artesian well where we sourced our drinking water.
,br> But seasons change. Winter drove us to seek shelter indoors. Yet one more stint with a not-so-empathetic friend (again reneging on a promise within just three weeks); a few more months with a better friend and their even worse father; too many other heartbreaks to even begin to list over the winter. I’ve struggled with housing instability for over a decade, my entire adult life, now; I’ve found myself in worse, more distant places, to be sure.

Maybe it's just wishful thinking, but... something about this time and this place does feel different, especially now that he's here.

When we first came back to Michigan, we were so excited and hopeful; especially that first day as we pulled in on the car ferry, with the lake so calm and smooth— but hazy, too, not exactly clear all the way to the horizon— and we sat up on the smoking deck, smoke from the coal stoves blowing into our eyelashes, and there was a small handful of emerald ash borers littered behind the bench there, dead, pushed about occasionally in the breeze— and it was the one place on the boat that our phones had service all the way through, and we were so excited to see the first glimpse of shore. We sat up there with the old folks smoking cigars, and we watched the dunes and lighthouses grow closer, and a couple of people with a camera approached us and said they were taking pictures for the boat’s PR endeavors and would we mind having our photo taken to use in their promotional materials? Somewhere out there is a picture of the both of us on deck, me in my tye-dyed headshop tee and Bel in a bright red floral, leaning into one another and smiling as we watched home draw closer in real time.

We were so happy to be back.

Even without the car, the plan was to go back to the woods. Many homeless in the area do so due to the legalities; it can be difficult to detect notice in a small tourist town, especially at the height of the season, and the penalties are steep and long-lasting- but it’s free and legal to live in the national forest for up to 14 days in any one spot. When your 14 days are up, you're free to move to the next spot over. It makes it immeasuarbly harder to access necessities and services, but we had to be nearby to make it to our housing appointment, and we had no one else in the area to stay with; it was either camp in the woods, or camp in the homeless encampment, if its still standing. My family are still nearby and in loose contact with me. They provided us with a bigger tent to borrow, a cooler we didn’t end up using, a 30-gallon bladder for water storage (far too heavy for us to carry when it was full, and it made the water taste like plastic, so we didn’t use it for drinking, but it did last us almost a full 2 weeks), and a few rides into town.

But at the end of the day, they still left us out there. We had nowhere to be but back at camp.

And when the housing commission turned out to be awful and our “interview” there went more like an interrogation, we had nowhere else to go but back to camp.
And when Bel woke up screaming and vomiting in agony one day, in so much pain he was sure he was about to die, and I couldn’t get a signal on my phone, and his had about half a bar and 1% battery left, I barely managed to reach 911. If I hadn’t, I’d have had to leave him alone and run for help on foot; it would have been a mile to the nearest road and possibly further to the next camper (it was seven miles to the nearest gas station, and nowhere near town).

The ambulance managed to find us, 15 miles from town and down a two track, but when they said it was a kidney stone and it should pass in a few days, they sent us away with some pain meds and a pee strainer, we still had nowhere to go but back to camp.

When we first arrived at camp the road was quite busy, and there was only one campsite open that we could take, but the other campers cleared out in short order as the weekend drew to a cose. Once we had the road to ourselves (truly to ourselves- again, one other person was camped a mile up the road), we got more acquainted with our real neighbors, the insects and fauna of the area. It became clear very quickly that we were camped directly next to a bear den, barely 50 paces from camp, and an active one, to boot. Just south of us was a swath of trees, cut freshly since the last time we'd been out at camp, marked and sliced neatly by the lumber companies, then piled and left to dry. There were two stacks at least 10-15 feet high with ample space inside for bears, and sure enough, each and every night around the same time, we heard a tremendous crashing and crunching from the trees as the weight of something huge clumsily extricated itself from the stack.

Bears may not be vocal, like raccoons, owls, or ravens, but the sound of them is unmistakable, especially in our region. Lower Michigan has no other animals of comparable size that behave the way bears do. Deer are large, but they don't den in lumber stacks or cavity trees, and they're light on their feet. Unless they're running or snorting, you likely won't hear them. Raccoons are vocal, but small. You may hear them arguing or rustling in the underbrush, but even the biggest raccoon sounds more like a dog than anything else. Occasionally, deer or other animals will stop on a twig and snap it, but a twig snapping sounds very different than someone breaking down branches for firewood.

Bears sound like they are breaking down firewood. Their weight is audible and unmistakable. Being apex predators, they have no reason to employ stealth or to tread particularly carefully. And that was the sound we heard coming from the wood pile behind camp every night; and whenever we would wake up with the hairs on our bodies standing on end, and the katydids and crickets and owls had abruptly gone silent, we would bang on our metal stool, and whistle, and howl and bark and scream to make as much noise as possible, and we would hear something huge and heavy crashing away outside of camp.

The best bear-safe protocol is to keep food, trash, deodorant, toothpaste etc in your vehicle, which we no longer had.
The next-best option is to use a bear can, a big barrel made specifically to keep bears out even if they detect it’s contents.
Barring those, scent-proof bags should be employed, and the best practice is to hang said bag between two trees (10’ from the ground and 5’ from any branches or trunks), ideally about 200 feet from where you’re camped.

We had none of those options available to us, especially not when we arrived early in the morning to only one campsite open; no bear bag, and too much food to lug that far every day with our disabilities. It made me incredibly nervous to do this because I knew how bad it was, but with few other options, we kept the food in the tent, inside our measly cloth Costco cooler. And in a true testament to the inadvisability of this idea, we had to wake up and scare bears away from the perimeter of camp almost every night. I barely slept, jumping back into consciousness at the slightest rustle.

With no way to charge our phones, it was hard for us to keep in touch with the few supports we still had, and no one was coming to check on us regularly. We got a few rides into town during which we were able to partially charge our phones. At one point, Bel was talking about our situation to our friend, the same one who’s been fostering his cats. Appalled by the situation with the bears, she offered to let us stay with her and the cats for a time.

We were terrified to accept another such open-ended offer, but we had nowhere else to go, and aside from the very real dangers of the distance, the bears, the constant gnaw of mosquitos, the unbearable heat, having to walk 3 miles a day for water… worse than all of that was the mental toll of the isolation. When you have a car and can come and go as you please, it can be soothing.
When someone else takes you out there and leaves you, and drives away, and you’re just… there, with no end in sight, no idea when the next visitor will come or who it will be, no idea how you will continue to get food and medicine, no idea how you’ll keep searching for help and resources without a phone… it leaves you with a very different kind of emptiness.

Thankfully, this offer does not seem to be like some of the others, at least so far. I know this friend from my time in Oshkosh, a mutual with the host who housed us all winter. Formerly a professor at the university and now disabled by long covid, fibro, and chronic pain, she has a very solid grasp of our disabilities, ableism, capitalism and the overarching structure of how things work; she is likewise queer and a sort of anarchist, and not merely someone who says so. It's extremely validating living with someone twice my age that has so much in common with me, and who reacts better to our conditions than my own parents. (My mother could never be bothered to Google how to support a trans person, or the names of my conditions. Miriam Googled POTS the first time I mentioned it just out of curiosity.) When we explain how our symptoms will present and what's the best way to respond, she says, "That's good to know," and takes it to heart, rather than denying the need outright.

Since the day we arrived she’s made an effort to listen actively and try to understand the both of us, and seems to actually care if we’re comfortable, rather than just provided for. Her listening ears have been invaluable these past few weeks, even moreso than the space she’s letting us inhabit so fully. (She told us about the school she went to growing up in this area and how progressive it was; it operated on a foundational concept of everyone has something to teach you, and if you can’t figure out what that is, that’s a you problem.) She is an excellent communicator and seems to actually enjoy our company and our efforts to change the space to everyone’s benefit. Unlike before, there has been no air here of, “That’s just how it is, if you don’t like it then leave.”

We’re comfortable here so far. We like it. We can relax ever so slightly-- as much as we ever can. We have the basement to ourselves. Unfortunately our “bed” got ruined in the rain, a foam pad we had formerly been using and liking quite well, but in the meantime until we can replace it, we’ve pushed two ends of a sectional together to form a sort of bowl about the size of a full mattress. It’s cool and quiet down there. We come upstairs every day and smoke in the kitchen or on the porch, admiring the admirably overgrown plot on which Miriam’s house rests. She calls it a nightmare and blesses the patience of her neighbors; Bellamy and I adore it for how wild and unlike a lawn it is, with even the prairie grasses and coneflowers reaching head height, and so many fireflies at night. I’ve been so worried about missing them, seeing them less and less over the last few years.

One day, I even caught a glimpse of my favorite bug in her garden, one I’ve only seen once before in my life— a hummingbird moth. Supposedly they are all over the midwest, but they can be rare in certain areas. The only other one I’ve seen was in Colorado (another place I wound up due to being homeless).

I’m choosing to believe this all bodes well. I’m choosing to lean into that feeling, that maybe this time it’s different. Ann Arbor has many more resources, especially queer ones, than we are typically used to having at our disposal (and higher demand for said resources, but still). The fear is always in the wait. Will we be able to stay here long enough to actually wait out the necessary lists, to make all the calls, to maintain the residency that grants us a shot? Only time can tell. But we both like it here so far, and we both hope we’re still in Michigan come this time next year.

We aren’t merely living here; everywhere we go, we try to build community, and put down little roots, even if we don’t want to stay there forever. It’s good to have friends in far-flung places. If it weren’t for that, we wouldn’t have even made it this far. We like to give back, too. We like to help tackle the dreaded projects that are too overwhelming for our friends to take on alone. We like to help clean, or clean for them, because sharing the burden makes it so much lighter. We like to offer listening ears, and pet care, and shoulders to cry on, and moral support, and childcare, and good, friendly advice and encouragement.

We are lucky to even have this much, and it's a lot; to have each other, not having to be doing it alone, and to enjoy and need each other’s company so fully and equally. To have even a small handful of friends who show up regularly, even if not often, to listen to us, to get us where we need to be, to give us someplace safe to sleep. Even if none of them can help us indefinitely, we have a chain of kindness keeping us alive.

Years ago, just as my housing instability began, I was a member of a now-defunct pet owner forum. It was for all pet owners, but had a special focus on exotics, especially rats. The community there was amazing and so loving and empathetic. You could talk to them about anything, not just pets, and many deep friendships were formed there. If someone on the West Coast found themselves in possession of a rat they could not keep, and someone on the East Coast was available to take the animal but couldn’t make the trip, the members of Goosemoose pet portal would band together to form a train. Someone near the starting point would drive for several hours to meet another member of the forum, who would then take over for as long as they could, and so on and so forth, until the animal made its way home.

That’s kind of what people are doing for us, over so many years, and miles, and many different kinds of favors. No single one may be able to carry us the whole way, but their ability to take us even to the next stop is keeping us alive for that much longer. There are times when it feels like it won’t be enough, but it’s gotten us this far, and that’s not nothing. Building community, trying to find where home is, trying to make the next right choice amidst a never-ending torrent of things happening (and the damned things overlap). I do worry often about how long it will last, how far we will get in the end. Bellamy’s hair started turning gray before his 25th birthday, and I think about how the life expectancy for BPD is only 26. I am showing concerning signs of memory loss in my 30s, not unheard of when dementia runs in the family, as in mine, and I have a disorder that will progress until I am on a feeding tube. Will I even have a home to recover in when the time finally comes? Will I survive to need the tube, in the end? When our welcome wears thin here, will we end up in a tent under the bypass with the rest of the forgotten masses who reached the ends of their ropes, too?

I don’t know. I don’t know what will happen six hours from now, let alone tomorrow, let alone next year. But I do know that right now, in spite of all I’m lacking, I do still have a lot. I have a partner who loves me, who makes me better, who listens to me and cuts my hair for me and rubs my neck when I’m sore, someone who depends on me. I have a friend who’s keeping us safe, letting us use her car, and before she heads to bed, hands me a Kindle with full access to her own personal library on it (I am a book lover, and having to leave behind so many of my own has been hard, especially after having to drop out of school; sharing a college professors library is a dream). I may have little say in where I go or when, but I get to travel around and see different places, even places I’ve hoped to see, on accident. We get to try all different kinds of foods, and meet all different kinds of people. Here in the kitchen at 1am, I try flan for the first time, a 2-dollar prepackaged cup from the Mexican food market, and it looks unassuming but tastes divine.

It’s not a perfect picture; our days are spent primarily regulating our symptoms, from start to finish. Bel has nightmares every night. It takes us all day to complete a single task, even combined. We need more time, more space, more grace that most people are willing to give us. But he is the love of my life, absolutely and fully, and we are here together, every day, and as much as I wish I could give him a real home, I know that he is home to me. Even though we can’t get married (or risk losing the benefits that keep us alive), we talk often about choosing the same last name for ourselves when we change our documents for our transitions.

Figuring things out in spite of the never ending blows landing on you, forging ahead, figuring out who you are, who you want to be, where you want to go, and what relationships you want to have… trying, and failing, and keeping going no matter the circumstance, until you just can’t anymore…

I’m practicing embodying more fluid, non-binary, community-rooted ways of being— I think this practice is called “living” or “being alive”?

People have tried and failed and succeeded and suffered and thrived and loved and lived in conditions far worse than what we’re working with now. And so can we.





Killjoys, Make Some Noise



Welcome friends, family, gamers, bloggers, internet neighbors and benevolent passersby to my house of existential horrors!!!

(Thu Sep 22, 22) … I’ve had an itch to blog for some time now, but I hesitated to start for a number of reasons… not least among them self-preservation. I'm no stranger to being bullied and heckled, and putting something raw and vulnerable online makes you a bigger target than, perhaps, simply not doing that.

That, and the way I've chosen to use my words online, in the past, has been... unpleasant at best. Definitely unhelpful. I'm not at all offended by the idea that someone might decline to hear me out because of that. It's perfectly understandable. I've taken a bit of a hiatus from writing and sharing too much in recent years becuase I wanted to pull back and really think about how I wanted to use and choose my words, and what I wanted to say.

Likewise, my brain is not what it used to be. Finding words is difficult; I am plagued by brain fog and poor memory, reaching for words is often a long stretch, and I tend to talk in circles, forgetting the points I’ve already made, even upon re-reading. (Also lol at the version of me who was going to be an English major. What the hell is this? I can’t even read this shit. “Reed receipts”? UGH.)

Anyway, there’s some pretty solid reasons why I’m afraid that I won’t be able to express myself clearly; or worse, that maybe I will finally find the words and express myself just how I need to, but it will be overlooked because of the reputation I've built for myself.

tl;dr i'm not so much of a great writer anymore and im not sure how much i have to say is worthwhile. I mean… Oh well, right? I gotta try. can't bottle that shit up. And writing helps to get stuff off my chest even if I don't get my point across well.

Then there’s the one last big hurdle: I have to talk about my health rather a lot. And the things I have to say about my health are rather unpleasant, and I admit it’s not fun to listen to. It’s certainly not the kind of thing loved ones want to hear when they call for updates. They want to hear that you’re doing well, that good things are happening, that you’re able to come hang out.

Let me tell you what, it’s not fun to live with these things I talk about, either… but if you can manage to listen, it helps to carry the weight. When you bear witness, you help share the burden. Maybe this won't even touch the people closest to me, but rather, people who are very far away and fighting the same fights. Maybe someday when they finally start taking MALS and POTS seriously it will help the research. I don't know who it's for besides myself primarily, and because it's for me, it's real and fairly uncensored.

I do joke and jest sometimes, and I try to find a way to tell these stories that isn't quite as hard to listen to as it was to live through. Sometimes. There are times when things should make you uncomfortable, but I try to lessen the fatigue for myself as much as anyone else. That said, I make no guarantees:


ye who enter here, be prepared for shit to get kinda serious.


I know that following along with what I’m saying is not always easy, for both of the reasons I’ve listed and more. If you decide to try nonetheless, I humbly appreciate it. It’s a kind and patient thing to take so much time out of your day to listen to my sad, meandering riddles.

— moving onto the sad riddles. —

The short version is I got what I think was swine flu in 2010, and I simply haven't been the same since. It seems I was prediposed to POTS, a type of dysautonomia, that was acutely worsened by my 4-month flu. Then, after a couple years of battling with new and much worse symptoms than I was ever used to, the MALS began to act up as well- though I wouldn't know that's what it was called for almost 10 more years.

My symptoms are varied and complex, and it's hard for me to do anything that requires being upright. I found out from wearing a fitbit that, when I'm driving- a task I'm very good at, confident in, and something that I actually enjoy doing and that often calms me down- my heart rate never falls below 100. Nor while I'm cooking, cleaning, working at a desk, or anything else that, again, requires being upright. If I "push through," I black out.

I say this only to establish the basis of my little backstory here. My website is not a pity party, but rather, my own personal record of living with these conditions. Other such records have been immeasurably useful to me; maybe someday this will be useful to someone else as well.

Likewise I just want to chronicle my journey for my own sake. I do journal with a pen and paper IRL, but that's a different scope of record. Putting it online allows me to achive one other crucial possibility: to feel like I have folks in my corner. No, this is not your fight, but it helps for someone to merely bear witness. We share the weight, we learn from each other, we improve ourselves and our lives.

So if you read all that and you’re still sticking with me from the sidelines… thanks :heart emoji: it sure means a lot.

This has been the weather.



how to make lying in bed doing nothing sound interesting?



(Fri Nov 25, 2022)...This is, at least, my favorite time of year to be laid up. Dad watching football a few rooms away feels cozy, a bit similar to someone practicing an instrument nearby. I’m sleepy under too many blankets, never more thankful to be warm and dry than as snow and wind whirl in the cold outside. Windows shine gold in the gloom, warm points of light on a bruised-blue backdrop. It feels just how you’d imagine, being on the other side of one of those windows. Like you are a perfectly cooked loaf of bread in the oven.

So that’s nice, at least. You really do gotta hold onto those little things. Especially in winter.

I recently had an infected tooth & emergency extraction. Since my mouth had started to heal, I was eating really well. Suspiciously so. And I knew it had to end, that it was merely a fluke come to pass, but you can never know just when it will.

I started a new drug, a little pink pill called amitriptyline. Prescribed mostly for sleep, but partially, as well, in the hope that as a nerve pain reliever, it may help my MALS pain somewhat.

It seems like maybe it has— somewhat. But of course, it’s just a band-aid. Underneath the mask of pain management, the MALS marches on. Nerve damage continues unabated. Arteries weaken. Muscles constrict. Something is still wrong whether your nerves are turned on to see it or not. (If an artery collapses but I'm too fucked up to even notice, does it make a sound?)

Most days are… fine. Even on a good day it’s uncomfortable, it hurts, I have to be careful with each and every movement, and things take me four times as long as they should. But as long as I have weed and am able to stomach at least one meal, that’s a success in may book.

Then there are the bad days.

Yesterday was fine. Totally normal. Thanksgiving, even. I ate not one normal-sized meal, but two, all with a manageable amount of pain and only a small headache afterwards.

Today, though.

Today, from the first moment I entered consciousness, I was in excruciating pain. No food yet, no water, no pills, no stimuli whatsoever. The first and only: pain, pain, pain.

It wraps around the abdomen. A thick, searing band of pain and tightness, and an odd sensation of coolness at the center, like the shock of metal when it first touches skin. Except it’s deep. So deep. It feels like I am made of paper and I’ve been folded in half, sharply, at the center. Hamburger-style. Crease smoothed down all the way. No matter how much I stretch and draw back my shoulders and arch my back and try to release that tension, it will not release. It feels like all my muscles are pulled tight around a center point, like a mouse trap set to spring. It feels like I am being pinched in half by razor thin cheese wire.

Today the pain is noticeably more severe, and has spread to the muscles all around my abdomen, making them feel sensitive and weak. They shiver and convulse at random. It feels just like I’ve already spent hours throwing up, though I haven’t yet, but the feeling is so strong, the pain so intense and nauseating, I wonder when— not if— I will start.
Instead of breakfast, I heat up a hot compress in the microwave. I fill up my water bottle, make sure my ER-issue barf bucket is handy, and I go back to bed.

Within just a few hours I am exhausted, depleted from the pain. I have done nothing all day but shake through it. Fatigue clouds my emotions and weighs my eyelids. There is one (1) comfortable position I can find when my stomach hurts like this: flat on my back, no pillow propping up my head, holding nothing (not a phone or a book) above me, as even that light compression of my abdomen makes it all worse. This is the kind of pain that makes your mind go blank when it hits. And all you can do is wait for the wave to pass, and the next to wash over you.

Any other position besides flat on my back is wildly uncomfortable. Even just sitting upright. My diaphragm itches all around and under my ribs, as if it’s inflamed. Breath comes short; I constantly have to remind myself to keep breathing. My head pounds, starved of oxygen in spite of the effort. Anytime I move, reach, bend or twist, my stomach howls, convulsing in emptiness and hunger pangs as much as in response to the pain. It throbs like an enormous wound, and all of my other muscles freeze up as the rogue wave of that pain reverberates around inside my body like a boomerang. Being hungry hurts. Having anything in my stomach hurts. Resting my hands on my abdomen hurts. I don’t know how to move my body. I don’t know how to get comfortable.

Living with this for so long has done things to my appetite. Most noticeably, it doesn’t usually exist. I have to force it into being with the use of cannabis. It does not come easily. My MALS-restricted diet was further cut down by my recent tooth infection; already barely eating, I was now unable to chew. The place where my tooth once was has began to heal, but for three weeks, I starved.

It’s been three more, now, and somehow I have rediscovered my appetite, but no matter what I eat, my stomach hurts. And the more (and the denser, and the more nutrient-rich) the food, the more it hurts, and the more the headache afterwards rages.
I am incapable of eating until I’m sated. I eat like a baby bird, small portions every 2-3 hours, sometimes even more frequently. My entire day has to revolve around food and my meals. I can’t go anywhere, even to run simple errands, without emergency snacks.
I am still. Always. Hungry.
Even on my best, least-painful, goodest-eater days, I can’t make up for the weeks and months I will inevitably spend eating the bare minimum.

Today, the pain makes eating unthinkable. The mere thought of food makes my gorge rise. I know better than to try; last time I tried to “push through” this feeling, I would up having a screaming panic attack on the floor, and not eating the food that caused it, anyway.

So. Here I am. Unable to sate my hunger. Unable to function otherwise on this lack of calories. Unable to sit upright. Too tired to focus on games or TV, let alone a book— but even if I could, holding my phone up in front of my face means resting my arms, however slightly, on my abdomen, and even that hurts.

I am trapped here, lying flat in bed, too tired and weak and painful to do anything, floating between states of consciousness and fatigue and boredom. If I can manage to play a game for a while, I try not to feel too badly about it. No amount of wanting it gives me the option of playing outside instead.

time spent recovering is never wasted.

Remember that. Remember it. Remember.

Tell yourself every time this happens, this entire "wasted" day of rest.
Tell yourself even though it was your 21st birthday and you always thought it would be different, you're not sure how, but you didn't think you'd just go home from work and pass out... but that's okay. You obviously really needed the rest.

Tell yourself even when it was your only day off, and other things really needed doing, but all you could do was sleep. And you tell yourself when it wasn't your day off but you had to call in. Again. And then again.

Keep telling yourself.

When it starts happening once a month, keep telling yourself.
Now once a week.
Keep telling yourself.

You need rest to live. Everyone needs rest.
Keep telling yourself.

Even as you lose not the first, nor second, but third job in a row.

Even as rent looms on the horizon and nothing is budging and you're spending more time in the ER than at the job interviews you can't get to anymore.

You know you need rest to live.
You can't afford it any more than the groceries you've stopped buying. And yet.

You keep telling yourself that all this time hasn't been wasted.

That you haven't wasted your youth.

Before you know it, 10 years has gone by. Now, you spend more time abed than anywhere else; a good day is a rare treat to take advantage of, not simply par for the course of your age. That Animal Crossing island you’ve built is as real and tangible and important as any relationship IRL. You feel like you spend more time playing games and daydreaming than on your real, waking life, and at this point, you’re scared to quantify it.

Your virtual lives are works of art in a different medium, you tell yourself. Along with "recovering isn't doing nothing" and all of that. And you know it’s true. But it bears repeating because no matter how many times you tell yourself, you still find yourself here: You grip the sink to steady yourself. You grit your teeth when you look in the mirror and you keep. telling yourself.

It’s not a waste of time.

It’s not a waste.
You are not a waste.

You are not a waste.

This is important, I tell myself. It’s not just that “I can’t do a single damn thing with my body today.” It’s important that I rest; resting, too, is doing a thing. That, too, is a type of work, though on a cellular level we can barely comprehend, but nonetheless… We don’t “waste” a third of our lives sleeping even at the best of times.

Our dreams are as much a real part of our lives as breakfast.

(Keep telling yourself this. Never forget this. I don’t mean it ironically; it’s true. But it is hard to accept, I know.)

(Keep telling yourself.)

There are days— more with every year that passes— where even that is too much. Where even the smallest movement is nauseating agony, where visuals are dizzying, and every sound is like a knife to the ears. Days where my phone is somehow too heavy to hold, where focusing on something is beyond me, days where I am so fatigued I feel I’m lost in an endless fog, stripped bare of anything that once made me real and individual.

These are days spent drifting somewhere between the dream world and this other one, too tired to be able to tell the difference anymore. Too exhausted to focus on the real world; too sick of fucking resting to fully lose myself in the dream.
Too many days to count.

No amount of body positivity and crip pride and healthy coping skills can make those days easier to pass. Nothing I’ve yet found eases that itchy feeling under the soul that, I’m only 30, I “should be” moving, should be doing something else on those days. I should be somewhere. I should be someone. I’m supposed to be doing… Anything else but fucking laying here. I don’t know what it is. Bettering myself, somehow, doing my stupid little DuoLingo lessons or still making art from bed, or whatever. Finding some way to be plugged in and Learning or Doing or Creating despite the fact that I’m flat on my ass and reading too fast makes my head hurt and my arms aren’t listening.

It’s hard, even for me, not to think of these days as “wasted” nonetheless.

Can I synthesize this into something… useful and poignant? Somehow?

I don’t know. These days leave me with the same sorts of questions you might have after hearing about them: How do I suffer it? How do I keep doing that, indefinitely, forever? I don’t know, I don't know. It’s been 10 years and I still am no closer to understanding.
But I wonder this, too:

What will I say to my friends and family when they, inevitably, start asking the same questions?

I got a head start on aging— not just ahead of my peers, but my parents as well. The specifics of my condition may be mine alone, but the general concept of “guy can’t do things he once used to do, is in pain all the time, no longer knows what foods will nuke his guts, etc” is, effectively, a near-universal experience for any organism that survives long enough.

Maybe there are no answers. Maybe these are merely evergreen rhetorical exercises. A sad riddle with no one answer, but rather, many potential ones.

Because even if you remove the cultural context and the feelings of uselessness and stagnation, of capitalism and the hustle and grind culture. Even if the world were perfectly accepting of disability and of taking time to rest and heal; even then, on these days, you are still left with these bitter, uncompromising facts:

I am bored.

I am lonely.

I am stuck in here while my peers live life without me.

Reaching life milestones, and finishing school, and meeting people, and finding work they can take pride in, and developing their skills, and seeing the world, and having new experiences, and settling down and having kids.

I don't get to do anything, or be any of the things, that I had planned. I don't even get my own space, one small little corner of this vast world to call my own. I live with my parents. (The answer to the question, "How do you survive once you can't work?" You hope and pray that someone keeps loving you. That's how.)

Sure, if you could remove the wider context of ableism that would be great. I’d love it if people quit thinking I was choosing to live like this. I would hope my tone makes it evident that absolutely nothing about this is benficial to me, and there are thousands of better and more effective ways to get "attention," which I, frankly, avoid aggressively, even in my own home.

But even so.
How do you cope with watching your friends, your peers, growing up and moving on without you?

How do you cope with therapies like CBT that teach you that your body is safe, when it’s patently not safe for you? When it’s your body that’s traumatizing you?

These are questions I’m still trying to answer. They’re percolating in here. But I DO think there are answers. Probably many, that's the thing. I think so many of us prefer one concise, “correct” answer for things, but the reality of, indeed, MOST things— especially people— is far more complex than that.

We are far more than just one thing.

Why would the questions & answers that guide us be so simple?

what is up w these divs am I right lads