Disability Challenges…
I need to clean the litter box (I use disposable ones)…this requires bending, and putting the box in a bag…and all kinds of fine motor skills yeah…we’ll give this a try…after dinner…
I need to clean the litter box (I use disposable ones)…this requires bending, and putting the box in a bag…and all kinds of fine motor skills yeah…we’ll give this a try…after dinner…
Just finished up at the doctor; while we’re going over everything he was like “The problem with Rheumatology is that it’s not like Doabetes where we can just look at your A1C…so while you’re back at the Mayo Clinic in August please see if they’ll take investigate the possibility of Inclusion Body Myositis…”
Okay Doc…
So first – I am so incredibly thankful for the WordPress iPhone App. I’d prefer to be at my desk writing right now, but my body’s on day 5 of a flareup and I spent most of the day sleeping, followed by a good few hours finishing a paper, and I just can’t sit at my desk anymore, and I can’t sit in a position in bed to use my laptop either, snd my arms are in too much pain to type, so I’m super glad this is an option.
I was also about to self sensor and then realized: fuck it, it’s my blog, I can write, bitch, moan, and complain about whatever the fuck I want to here…that’s the whole fucking point.
So that said: I’m on day five of a flare up because my PT wanted to see my pain limits and levels (which was depressing in and of itself because it took ten minutes of barely and activity to fuck up five+ days of my life, and make absolutely everything miserable; I can’t even find a position to sit/exist in comfortably).
Adding this bullshit to my general level of pain and fatigue, I’m amazed I’ve gotten any work done at all. I keep on reminding myself I just have to get through this summer, and then it’s just field placement and two more courses (one class each semester) until graduation.
Fortunately, Akiva (my cat) is super snuggly, I have Netflix, and I’m almost done writing out my work schedule (including time built in for Fibromyalgia Fuckery) to get me through the rest of the summer courses.
One of the hardest things to get used to is forgiving yourself for not being able to do things/giving yourself permission to not check off everything on you to do list because your body just won’t let you.
It’s all a very shitty learning process. And right now it’s a shitty learning process where I can barely walk, everything hurts, and there’s no way of getting comfortable at all.
So I slept all day (with minor breaks to get up and use the facilities, shove food in my mouth, take pills, and make a Skype call). I could easily go back to bed now. This isn’t fibro fatigue though, I don’t think. I am relatively sure this is just my usual reaction to antibiotics which for some reason usually make me tired. But if this somehow handles the IBS it’s worth it.
Anyway, going to do dishes, finish (I hope unpacking and organizing/cleaning the lady of my home office), do the one grad school assignment that has to get done this weekend (an introduction/about myself post) so I can watch the lectures on for addictions and the family tomorrow, so I can greet Monday mostly non-grumpy like.
Part of my long term/dealing with this shit strategy is super vigilance on keeping my house clean and organized, because if it’s done constantly as I go, and it’s never a thing I have to do as one big chore, that’s just one more spoon I get to save for something else.
From a mobility standpoint of course it makes things easier too. This isn’t to say the place had been a wreck, we’ve just been in the throes of unpacking for the past several months and now it *has* to get done.
I am amazed, every y
ear, about how much Anime North & Yaoi North continues to mean to me – it’s honestly the most amazing three days (well, four, when I can get up on the Thursday night beforehand for pre-con shenanigans) where it is totally acceptable to let your inner geek shine on the outside, 24/7. Where every single person you meet is more or less an instant friend, because you’re all into the same stuff, and where you all have (at least some) shared experiences (it’s not like you can just plop down in the break-room at work and discuss the finer points of Doujinshi with the person sitting next to you and be guaranteed that they’ll have an opinion on it). It’s a place where every single staffer is there because they love this world and the people in it…and to me, that’s something truly, truly special.
It’s a place where costumes and music and crafts are all based on the things that have brought together our friends groups, and kept us tethered to reality in stressful situations. Even when I was in the Israel Defense Forces I never unsubscribed from the Anime North staff email list, because it was nice to get those emails, to make sure I was keeping up on what was going on with con, and to see those familiar name pop up on my phone, knowing it was something I was going to return to. When I worked what turned out to be two thankless jobs before returning to Buffalo nearly three years ago, it was the thing I looked forward to most each year, because it meant total freedom to be myself, and I made sure to keep reminders of it around my desk and my workspace at all times.
Anime (when I was introduced to it by my friend Ben in High School) is what gave me one of my first crushes (Spike Spiegel from Cowboy Bebop, who is the bar I still hold men to…see you space cowboy) and I cannot tell you how many times the medium has profoundly moved me with it’s art and beauty, as well as with it’s unique form of humor.
…and the thing is: every single person at AN/YN just gets it…and that to me is so, incredibly, special.
That said, here’s my Wrap Up!
Friday
Saturday
Sunday
First, this was my first convention having neurological disabilities that manifest themselves with physical disabilities/limitations so Zappy the Wonder Walker was with me (not pictured: the additional cane holder and my cup holder, because heck yes pimp my ride!).
https://www.instagram.com/p/BUhHB1mh2LU/
I use a walker for a few reasons. Sometimes I just can’t hold myself up. Sometimes I’m in too much pain. Sometimes my muscles/body aren’t working together. Sometimes my joints/body aren’t working together. Sometimes I lose all energy and need to sit *right now* because I just *can’t* stand, and when those things aren’t all going on at once, I use it to manage/conserve my energy.
Stairs, mind you, are the number one thing that sets off my flareups…along with lack of sleep, and running around, and stress, and walking, and movement…so you know…conventions in general…so I was very nervous (and, being honest, scared), having just gotten off of disability, what this convention would be like (because I. do. not. want. to. ever. have. to. go. back. on. disability. ever. again).
I am so incredibly grateful I had Zappy with me, especially because by day three I was on the very edge of a severe flareup (like, the kind that puts me on disability). However, with Zappy’s help, and the assistance of my fellow staffers (i.e. lifelong friends) I was able to avoid it. I was also able to get to each and every single one of the events/contests/panels/workshops that I was slated to run (and on time)! So yay accessibility devices (and friends and conventions that make accessibility a priority!)!
What was insanely frustrating was the hotel’s utter lack of accessibility (they were grandfathered into Canada’s accessibility laws) and the fact that they gave exactly zero fucks! The floor where our part of the convention was being held was split by six steps. The hotel’s ‘lift’ (and I use that word so loosely) was their food/cleaning cart lift (so nothing someone who’s disabled can manage by themselves), which didn’t have enough strength to lift a power wheelchair (so one of our other attendees was out of luck), and who’s ramp wasn’t wide enough for my walker to safely go on (parts of it were broken off).
This meant that I had two options: one walk to the other side of the hotel, take the elevator down, then walk clear across in the opposite direction, to get to an elevator that serviced only the convention space, and ride that up (nothing like all that extra walking). I tried that a few times…until I just barely avoided getting trapped in the convention space elevator (I had to shove the door open as the elevator waffled on whether it wanted to live or die with me in it). From that point on I was left with option two: be reliant on someone carrying my walker down the flight of stairs while I used my cane to get down. Normally I carry my own walker down a flight of stairs (something I am capable of as long as I use my cane to prop myself up…just not after a long day of conventioning…when all of my nerves are on fire, and my joints and muscles have checked out and given up).
The hallways while theoretically wide enough, were constantly obstructed by the cleaning carts…which wouldn’t have been an issue, if they didn’t hang a ton of extra bags and supplies off the sides (I’m assuming because their task masters/overlords don’t want them restocking), thus having no consideration for anyone with a mobility issue (or, I don’t know, needing to get by).
There were no handicap bathrooms in the hotel’s convention space, which meant that I couldn’t bring my walker in with me when I needed to use the facilities in between my panels and workshops, and I had no grab bars to bring myself down to the toilet (or off of the toilet) safely. This is something that doesn’t affect me on day one of the convention…it is something that affects me on day two and day three.
I hate having to rely on someone else to get me places, or do things for me: I cannot stand not being able to ensure that I am the only one responsible for me being on time to a panel or event (even with mobility issues, provided with the right accommodations/accessibility devices I will get myself around). I don’t like not being able to get to the con office quickly because I have to first return the ring to Mordor on my way to the elevators, or because I have to send an Owl for an able bodied staff member to come and lift my walker for me…and I feel like I missed out because the hotel put up a ton of unnecessary roadblocks which meant that it was just easier for me to remain in one place, rather than bounce around like I’m used to.
I’m glad we’re not going to be back there next year and – quite frankly – as an insanely inclusive organization and convention, I hope we shun this particular hotel until they make some good decisions.
All of that said this – in no way – defined my weekend for me, it was just something new and frustrating (and I’m a blogger, and this is my pensive), and I needed to get it down on digital paper. I am still very much on a post-con happy high 🙂 Additionally, I would be remiss if I didn’t point out that one of the absolute highlights of having our own hotel this year was having the Toronto Gaymers share space with us! They were the absolute best of Con comrades, and we’re looking forward to doing some very cool stuff with them in the future 🙂
Gryvon worked her tail end off getting con off the ground (and not just for our department). I am constantly in awe of how much she gives of herself to this convention (all year round) to make sure that the weekend is just totally seamless. All of our staff went above and beyond the call of duty (including our newbies…who are now family) and I am thankful to every single able bodied individual who lifted Zappy, and who carried, lifted, or moved things for me (especially because everyone also had other things that had to/needed to be doing).
I’m indebted to Chris from A/V who re-wired things to make the mics work better for me so I didn’t have to navigate around the room. I am just always in awe of how cohesive our Yaoi North family is, and always so sad that we’re split across two countries.
Next Year Yaoi North turns 13 – it’s our Bar Mitzvah Year! I can’t wait, I have a bunch of new things in store! I’ll also be graduated next Yaoi North…WHOA!!!
I always tell people: titrate off of the con, otherwise you’ll crash! I’m sure I could write more, but I’m going to ride out this post-con high, and watch a little bit more Anime as I get ready for bed, and continue to snuggle my cat, who hasn’t fully forgiven me for abandoning her for three days while I was at con.
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