Grieving Your Identity Never Ends: Disability and Travel

me trying to get alone time on an Ireland trip in 2011,
moments before someone boy wanders over
and prevents me from getting that alone time

Exactly seven months ago I wrote a blog post on grief for my past identity and who I always thought I'd become, and who I now can't be due to my disability. You'd think I might have made some progress since then, but to be honest it feels like I'm constantly finding new parts of myself to grieve, aspects of my identity that I hadn't even thought of in years or decades but were once so important to me.

If you know me currently, you probably think I abhor traveling. I find any excuse to avoid it no matter how much I actually want to be at the destination. If you knew me when I was younger, you probably remember me as a really annoying travel companion.

When I was a teenager (and maybe younger, I don't remember much from my single digits), I loved seeing and exploring new places. I never traveled for leisure - my family was too poor for vacations that weren't just camping in the woods somewhere - so I didn't see much of the world, but the opportunities I did have were amazing. I traveled around the United States for various Highland Games and Scottish Harp Competitions (where we also camped, but still). I went to Scottish Arts camp several years in a row. I got to go to Ireland three times with my high school dance company. I loved every single trip and every place I visited shaped who I am today in some form or fashion.

But the actual traveling part has always been difficult for me. In hindsight, I acknowledge that a lot of my difficulties stemmed from being neurodivergent, mentally ill kid with chronic pain who had zero diagnoses and accommodations and didn't even know I needed them. I would get so upset about my routine constantly changing, about spending so much time in cars or airplanes, about never knowing exactly what or when I would eat, about not having the option for silence and solitude. I don't think I ever had full on meltdowns, but I know I was incredibly grumpy and not fun to be around, and later I'd be ashamed of myself for being so childish when no one else was having problems. But I would still go.

Now I don't. There are so many factors to travelling that I now have to deal with. Where am I staying? Will I have a quiet place I can retreat to if I get overstimulated? Will there be ramps or elevators? Will whoever I'm with plan on walking around a lot and will someone be able to drop me off where I can sit? Will I even have access to a chair that wont make my hips and back ache? Is there even a point in going if I can't participate in the group's plans? Will I be able to eat when and what I need to? What if I have a flare up or a migraine? If I fly will I be able to keep my cane with me? What even are flight regulations for canes? Will people think I'm a paranoid hypochondriac? What if I actually am a paranoid hypochondriac? Will I just turn the whole trip into a nightmare for everyone else because I can't keep up and take out my pain on them? Will I be able to bring the four pillows I need to prop up my body so I don't subluxate anything in my sleep? What if something happens to my cats while I'm gone (one time my shitty roommates let Palmer get out and he was lost for a whole weekend and I didn't even KNOW and yes I'm still pissed about it)?

Anyway I usually just say no now.

But I don't have a lot to do these days besides think, and inevitably I've started remembering all those trips I used to take. Highland games with all the people in kilts and the constant bagpipes and the pre-competition nerves and that horrifying moment when I mispronounced Edinburgh when introducing my set and I still think that's why I didn't win that time. I remember visiting Ireland and falling in love with the rain and the green and the people and the art and thinking that I'd never stop going back there no matter what. I think of all the people I met who I thought I'd know forever. Teachers and mentors I wanted to impress. Friends I wanted to write letters to until we were old.

I stopped traveling for harp in high school when I had to choose between it and dance - but then I started traveling for dance. Later in college I got to go to more dance conventions and showcases, but by then I was starting to fall apart and spent most of the time sitting alone in coffee shops, only showing up to the concerts I was in.

And now I'm completely fallen. I drove to the liquor store the other day and that was the first time I went outside in weeks. I regretted it too, because kept missing turns because of traffic and the cashier asked if I was on a roller derby team and I just didn't know how to respond to that. I said I wasn't coordinated enough for that even though I was a professional dancer so I should be pretty damn coordinated.

Anyway.

I keep dreaming of a time when my life "calms down." As if my pain will even out and become more predictable, or I'll finally be given some treatment that helps, or I just get used to it. I don't know.

I've been reading a lot of historical romance and listening to a bizarre amount of 60s-80s rock and folk and being sad about it. I have no idea if it's helping, and I have no idea what that says about me or my mental state, but there you go.

Night in the Woods - disability and playability

 

    I have hEDS. All of my joints are always in pain, especially my hands. I also love video games. How does gaming work when your fingers slip out of place from time to time? Well, depends on the game. Thus, here is a review of Night in the Woods - and its playability for a disabled gamer with bad finger joints.

Title: Night in the Woods

Developer: Infinite Fall

Publisher: Finji
Platforms: PC (steam, epic, itch.io), PS4, Xbox one, Nintendo Switch, mobile

Controls: Keyboard or controller (I used keyboard)

Content Warnings: mentions of child abuse, alcohol, depression, anxiety, depersonalization

Playtime: 8-9 hours for one playthrough (impossible to see all content in one playthrough)

Pain level: 7 nightmare eyes out of 10

Worth it? Yes

Night in the Woods is a story-driven game about Mae Borowski, a cool young cat who drops out of college and moves back to her hometown. There she meets up with her mom and dad and her three childhood friends - Gregg the hyperactive deer (he looks like a fox but there's one line where he says he's a deer but who cares either way), Gregg's boyfriend Angus the gentle giant, and Bea the hard working and cynical crocodile. Mae spends her days exploring her childhood home, marveling over what has changed and what has not, and also avoiding talking to anyone about why she left school. She begins having strange dreams and things around town start to get weird...and it just gets weirder and weirder.

Gameplay is mostly running back and forth across the two-dimensional town and doing some platforming as Mae jumps up trees and walks across electric lines. You press a button to observe things or talk to people, sometimes getting dialogue choices and sometimes not. You can choose who to hang out with (Bea or Gregg) and where you want to explore, and these choices fill up Mae's journal with doodles and recountings of their adventures. You can also decide how much time you want to spend practicing your bass or trying to beat Demontower.

If you have pain in your hands I would recommend you don't worry about mastering the bass or beating Demontower.

Several times Mae joins the gang for band practice and you play a little rhythm mini game. There's no real consequence for fucking up a song (because I definitely did), but mastering it during band practice gets you an extra page in your journal. You can also practice your bass at Mae's home a few times a day. This minigame is actually pretty fun - the music is rad and it's not overly complicated. If you're striving for perfection, however... frantically jamming your fingers onto the keys over and over again isn't the best.

Demontower is another minigame that Mae can play on her laptop. It's a simple top-down arcade game where you have to fight enemies, find a key to the exit, fight a boss, and then move onto another level and do it all over again. At first it's a fun little jaunt, but it easily gets frustrating and merciless. There are nine levels total and two different possible endings. Because it's top-down, you're pressing four buttons to move as well as the two action buttons - and you have to be precise and quick. And you also die a lot so you have to do it over and over and over again. This one really fucked with my hands, so I let it go after level 6 and played the rest of the game with finger splints.

Aside from the two mini games, you typically only have to press four buttons - left, right, jump, and interact. It only becomes frustrating because of the size of the town and the need to constantly check each location to see who's there or what has changed. Or you mess up the platforming and have to walk all the way back to the mailbox to jump onto the tree to get onto the power lines... 

The controls really become an issue if you're any kind of completionist and want to see everything the game has to offer. It's actually impossible to see everything in only one playthrough - if you choose to hang out with Bea one night then you don't get to see what Gregg is up to until you play the game a second time. BUT the idea of replaying the running back and forth and the platforming makes me actually dread it - despite my desire to experience the story again. I plan to replay it and make different choices eventually, but it won't be for a long time.

Okay I admit, it also probably didn't help that I insisted on jumping everywhere and couldn't walk in a fucking straight line.

Night in the Woods could hugely benefit from a toggle run button rather than having to hold down the left and right keys. Alternatively, if you can comfortably hold a controller it might be easier to use the joystick. Since the controls aren't complicated, you don't need to worry about being able to press all the buttons on the controller so you can also modify your grip if you need to.

All of these things can be avoided simply by playing in small amounts. I very quickly became invested in the story and the characters (Bea is my fav) so I played it in only two sittings - do not do this. If you're like me and like to marathon games you should find ways of pacing yourself. Night in the Woods happens one day at a time, and it also has different acts that also make good rest points. If those don't work for you, set yourself a timer to pause, stretch, do something that doesn't involve your hands, etc.

To be honest I'm talking to myself here, please don't think I actually follow my advice and live a healthy lifestyle.

Yes, Night in the Woods was painful to play but it is playable and it is worth it. The characters are fascinating and full of depth and the story takes so many unexpected twists and turns. Not to mention the gorgeous music and art style. It's such a beautiful game and a beautiful experience that, fortunately, is playable for gamers with hand issues.

I also have the expensive urge to get every doodle from the journal tattooed on my body.

You can get Night in the Woods on itch.io (where I played it) for $19.99, or if you happened to get that racial justice bundle a few years ago you may already have it... It's also available on steam and Epic Games, as well as on consoles and ios devices.

Longest Night and Lost Constellation

There are two supplemental games that take place in the same universe that I do want to mention briefly. Both games are much shorter (Longest Night is like, ten minutes) and so much easier on the hands. These two do use the mouse as well as the keyboard, but they don't require precision or quick reaction time, and you don't even need to use the mouse and the keyboard at the same time. Both games are also free on itch.io and are a good way to try out the series and game mechanics, and they don't spoil anything in the main game.

I'm not the first disabled gamer to review this game! The Geeky Gimp did an excellent job of talking about the mental health side of the game and how it tackles depression and trauma. 

grief for who you were, and who you might've been

 I am writing this because I am depressed and hopeless and sad.

I have no idea what I'm going to write. I just need to write something. I need to eject all these thoughts and feelings into some format, and these days writing is the only thing I can still do.

I may post this, or I may not. Who knows. I haven't exactly kept up with this blog that last few years. I want to get in the habit of writing more, whether it's blog posts or short stories or working on my scifi novel I started when I was ten. I can't dance anymore and I can't play my harp anymore and I just need some kind of outlet.

If you don't know, I've been in debilitating pain for over a year now. I've always experience pain, but in the past I wrote it off as dance injuries or that it was normal or that I was just plain weak. But in 2020 it suddenly got much, much worse and spread to new places and before I knew it I couldn't use silverware and had to use both hands to hold a book. My knees and ankles have become bad enough to where I use a cane (that I luckily bought from a thrift store years ago for a burlesque routine) to get around the apartment. I almost constantly wear braces on my elbows and compression gloves and often add my knee braces to the mix. I even went to the doctor (I hate doctors) and obediently went to specialist after specialist. No one could ever give me a real diagnosis, and no one seemed too concerned about the whole ordeal.

I'm still hoping and fighting for answers, but in the meantime there's an awful lot of waiting and pain. Turns out medical mysteries aren't like on House - where a highly trained team of professionals spend hours on your case trying to figure out the problem.

I never liked House very much. I didn't see what was so funny about a doctor being mean to patients and coworkers. My dad loved the show, appreciated how House treated "dumb idiots." Of course, my dad also likes the word libtard.

I've been sent to an arm specialist, an occupational therapist, a nerve study, a sleep clinic, and a mental health therapist who specializes in chronic pain. I finally asked to see a rheumatologist who I'll see next week.

Throughout all of this I've only gotten more depressed, and I've been unable to do any of the things that used to bring me joy - as well as the things that earned me money. Poor, depressed, and in pain is not a great combo, let me tell you.

Even if I finally get a diagnosis, if I finally get treatment, if I ever start feeling better and can function again... I know I'll still be depressed. I've been depressed my whole life and no one has ever been able to give me any kind of hope. Maybe I'm not trying hard enough. Maybe I'm just a dumb idiot patient in the world of House.

I feel like I'm constantly grieving something. All of my grandparents who died in the last five years. My dance mentor when I was growing up. Friends and family who don't talk to me anymore. Who I used to be before the pain settled in. Who I could've been if I had just been better.

I don't have a lot of experience with grief - most of the people I've loved who have died were old and had lived a long and fulfilling life. Sometimes I still get overwhelmed by memories, but in the end I can accept that they have moved on. But, selfishly perhaps, grieving for yourself never seems to stop. I'm still young. I haven't done anything great or made an impact on anyone's life. I'm not even dead. I'm just different, changed against my will. Desperately trying to find enough hope to keep going, to find some purpose, something greater than reading as many books as possible despite repeatedly being unable to concentrate on a book.

I used to be a little prideful of my hands. People said I had musician hands - long, slender fingers that precisely pressed keys, strummed guitar strings, and plucked melodies from a harp. I could express emotions through a simple port de bras in ballet, sending energy out of my fingertips to the farthest seat in the balcony.

Now my fingers are swollen. My pinkies are crooked, bending in unnatural directions. When I try to write by hand the words are illegible. When I try to type I have to constantly go back and correct typos because my accuracy has diminished. I'm afraid to try to play my harp. When at rest my fingers naturally curl into claws befitting an old wizened crone. 

I have nothing against old wizened crones. I've often had fantasies about being a little old person with an expansive library and multiple photo albums dedicated to every cat I've ever befriended. Of having a complete matching tea set to offer to guests and to invite them to browse my library and read whatever they like.

I just didn't plan on becoming that at 27.