Checking My Flail

Just yesterday, I had a conversation with a co-worker, saying that maybe I could hold out on the Bookmobile, maybe till next summer when the new Central opens. Maybe even until we get a new Bookmobile. I took the bus into the shop yesterday to get the heating system looked at (it was previously thought to be irredeemably non-functional), plus we’re getting closer to being fully staffed, and I felt pretty damn good yesterday. I had hope.

So, a few weeks ago, I was placing an online grocery order (in Tulsa, Reasors will let you order online and then bring it out to your car, super helpful for not having to walk all around the ding dang store, and they pick good cuts of meat and stuff), but I missed the cut off (they only do it on weekdays). I was cursing about it at my desk at work, and someone asked if I’d ever tried to use one of the scooters. And I answered in the negative. My reasons were 1) that is a very public admission of one’s disability, and I wasn’t ready but more 2) I was scared I’d run into stuff. Like, are there practice courses I could try them out on? That particular weekend was Halloween, and I was not going to try to navigate an unfamiliar vehicle through holiday weekend grocery chaos. 

But today, I found myself near Super Target with a few hours to spare. I never miss a chance to go to Super Target because they have a deal where if you buy a pound and a half of deli meat, you get a free half pound of cheese. BUT, there is always a very long wait because they cut it fresh, and it’s freezing in that part of the store. There was no way I was going to be able to do that today. I thought as I pulled into the super handy handicap space (I love my placard!) “Maybe I’ll try one of the scooters.” I was far from my neighborhood, not likely to have a lot of acquaintances witness my fumblings and possible crashings. And as luck would have it, an nice lady happened to be parking hers in the corral (or whatever they call it) when I limped in. She sweetly showed me how they worked and I was off! 

The scooter was way easier to control than I was afraid it’d be. That said, there were plenty of problems. First of all, and I know this is not news to anyone who’s used one of these, the aisles are not always big enough to maneuver through. The dollar section, where one always heads first at Target (at least if one is me) was particularly poorly designed. And then the clothing section! Oh god, I made HAY of those racks. They’re on wheels, and I tried, but they got knocked around like pinballs. Between me and the gang of roving 8 year olds waging a lightsaber battle throughout the clearance section, there’s gonna be a really annoyed retail worker tonight. 

In Target’s defense, the sweet girls working the dressing room were so helpful, without being weird. I actually was relieved when I saw young people working back there, because I knew I was going to have to ask for help. I feel like the kids coming up now, the teens, are so much more accepting, and go with the flow about differences like disability. I mean, they saw me roll up in a mobility scooter with a cart full of cocktail dresses, wearing a jean jacket covered in super hero buttons, they didn’t even hesitate with a “Hi! Need help?” Like it didn’t even occur to them that it’s weird, incongruous. And I saw the difference when I came out of the dressing room, when an older attendant was there, and she gave me a look and didn’t say anything for a second when I asked for help. But the younger girl swooped in and took my stuff, got me another size, wasn’t awkward about having to bend down a little to talk to me in the chair. Just, props to the next generation, yo. Eprops, as we used to say. Mad eprops. 

And here’s the thing. So many people have been nice and respectful to me since I started using adaptive aids in public. I approach a door, and I see someone’s eyes go to my cane, and then to the door, and they open it for me. They don’t rush weirdly and defer to me like I’m helpless. They just open it. And I appreciate it. When I was in the grocery aisles today, I had two people offer to grab things off high shelves for me. I didn’t see them and nearly hit them with my cane which I was using to get the things, both times, but still, way to go, humans. And one of them, when I pulled the bag of disposable cups down and caught it neatly, said, “Hey, you got it down to an art!” Which was nice because I don’t. 

But it’s great too, when people don’t do a thing. When I’m ignored the way you’d ignore anyone else in the world. I don’t need special treatment, any more than any other human. As long as you aren’t sneering, or treating me like an invalid, we cool. 

Other weird things about using the scooter: because your sight line is low, your profile is wide, and your speed is invariable, you must approach all intersections like you would in a car; stop, look both ways, wait for an opening in traffic, then go. I said your speed is invariable, though the scooters at Target seem to pick up speed in a straightaway. As I returned mine to the corral, I realized I was going too fast, and there’s no brakes other than just don’t pull the lever, so I kinda crashed into the wall. Eh, rookie mistake. Also, the reverse beeping is immensely obnoxious. 

All in all, I feel pretty good about popping my scooter cherry today. I had to keep my eyes ahead at first, so certain that people were staring, but I got over that pretty quickly as I was able to get around, and rest, and do much more than I could have without it. I did not get in my car and sob with pain and exhaustion afterwards, which I my usual post Big Box Store Trip routine, so that’s a pretty big plus. 

And I got some cute leggings. 

So, I love my co-workers. We are a big ol’ sisterhood of librarianship and misandry, with a healthy mix of nerddom, creativity and hyper-organization, and a moderate amount of clubbishness about ourselves. There are many organizations and offices, I’m sure, that feel the same way, but these ladies are mine and I think they’re the best. I have since day one. And if I have to leave them, I’ll miss them like a limb.

But so every day, sometimes many times a day, I lay upon the floor for a time. Sometimes I do it behind my desk, but my desk is in a very crowded and much trafficked corner. I’ll often lay in the “area” of one of my co-workers, or even just in the middle of the room, because I just. can’t. even. anymore. 

It started as a joke, but now it’s just a matter of course, to do a survey of the floor before you assume I’m not in the room. 

Often, it seems, I get my best laughs from my co-workers while I lie upon the floor. Perhaps my mind is clearest then, as I’m usually attempting to check my flail. Perhaps it’s sharpened by the pain. Or perhaps everything is funnier when it comes from a disembodied voice somewhere beneath you. 

Today, I lay behind and to the right of a colleague's desk, we’ll call her Millson. To the left of Millson’s desk is a woman named, we’ll say Janusch. I don’t know if anyone else was in earshot of this exchange. So, I was lying there, attempting psych myself up for the day’s route, and I was whining to myself a bit. I don’t recall precisely what I said, but I know I was half singing, something like this.

“My body, please be fixed. Please fix yourself so I don’t HUUUURT anymore!”

I think I mumbled something about it not rhyming, and Millson said, “Sounds like a spell.” 

“Yes, yes, because I am a witch!” Remember, I’m lying on the floor. I’m also not speaking very loudly, at least for me. “A witch, we are, yes . . . I have had congress with the beast!” 

Many people crack up, but especially Janush. “What, what!?” I exclaim. “It’s from Firefly!” (It’s from Serenity, actually, but it’s always easier to just say Firefly.) 

As my previous post suggests, I don’t know how long I’ll be able to continue driving the bookmobile. This decision is not being made at all lightly. Since early on, I’ve known I couldn’t do it forever (despite my declaration that they’ll have to pry the steering wheel from my cold dead hands. I like to say that because it’s so melodramatic, but it is apropos because when I do finally surrender my job, it will be a kind of death). At first, I thought I’d have 10 years. Then, I hoped for 5. Then maybe one or two more years, if I was vigilant about physical therapy, used every ergonomic trick I could find. And part of me still hopes that, that I’ll find a few magic bullets that will enable me to keep going for another year. But I’ve used more sick time in the past 2 months than all the rest of the year, and though I usually feel great on Mondays, start the week thinking I’m finally on top of it, by Tuesday (today is a Tuesday) I’m falling apart again.  It’s hard to ignore the fact that my job is destroying my body, and it’s getting to the tipping point.

And it’s not just the driving, or the shelving, or the happy, beautiful, adrenaline fueled chaos of the bookmobile stops themselves that’s destroying me. It’s not even just spending a minimum of 5 hours a week being banged around like beans in a maraca as our cantankerous rattletrap bounces down the road (though the lack of a real suspension on our bus is a public enemy number one in my book). It’s the combination of all of it, every day, constantly. It’s the fact that I’ve spent my whole life on the front lines, refusing to sit behind a desk, building it myself, riding instead of driving, unable to sit still, unable to take the easy way. It’s the fact that I’ve done all that for 30 years and my body just simply can’t take any more. Not if I want to be mobile for another 30. Not if I want to have a family. 

There’s a Pedro the Lion song, The Poison. The last line goes, “My old man always swore that hell would have no flames, just a front row seat to watch your true love pack her things and drive away.” I’ve never experienced that, but I just watched my Bookmobile drive away without me because I was in too much pain. 

It’s not the first time I’ve had to abandon the route because of an EDS issue, but it’s the first time I was in the driver’s seat and had to let go. I subluxed my left rib (or maybe my shoulder blade) for the first time today, and I think that’s why it got so down to the wire. I didn’t know the warning signs until it was upon me. I tell you what, you don’t fully appreciate that this is a connective tissue disorder until static parts of your anatomy start moving around. 

I felt something was off when I did my traditional pre-route lay down/meditative breathing/physical therapy/stretch time. I lay on my back on the floor in my office and it felt like I was laying on uneven ground, like when you lay on the dirt underneath trees, like there were roots beneath me. I tried to breath, and stretch, and had a friend press on the spot that felt the most out of whack, and it helped. She said she felt something move and I did too. But once I began to gather my things to leave, I felt it pop right back out. 

I let folks know I wasn’t sure if I could drive, but I’d try. I went out to my bus, went through the motions, and felt ok. I’ve driven that bus with my left shoulder completely dislocated, I was sure I could manage. The co-worker who was riding shot gun tonight came out, and I got ready to go. But when it came to the moment when I had to release the air brakes, I couldn’t do it. I couldn’t get enough leverage against my own spine to push the button in. My co-worker kept asking if I was gonna be able to drive, I couldn’t answer. I re-centered myself, took a deep breath, got a better angle and was able to do it. We began to move. But as I turned the wheel at the same time as we hit a small bump, my whole upper body flashed with pain and I knew I couldn’t make it through the night. Not safely. 

My co-worker offered to get someone else to park the bus again while we figured out another driver. I was not ready to do that, to leave my bus abandoned in the middle of the street while someone else parked it. Slowly and carefully, I reentered the parking lot. Once we’d parked, I just sat there while she went inside. I didn’t let go of the wheel, didn’t move. Half from the fear of the pain, and half from the feeling of finality, of surrender, that would come with releasing that steering wheel. 

Another driver came out. “I’m not ready to let go,” I said. 

“I’m not gonna take it from you,” she said.

“I meant what I’ve said, all those times. Cold, dead hands, they’ll have to pry this bus from. My cold, dead hands.” 

“I know.” 

So, see my first post for a real downer. I had to get that out of my system.

I’m starting this blog for a lot of reasons. Everyone I know is always tossing around the idea of having a blog, though I probably swear I’ll do it at least once a week. I’ve been saying I’m going to do it to chronicle the weirdness of my job. Or to encourage me to write again. Or to take a more active part in the fandoms I enjoy. Blah-di-blah blah. What finally got me to sit down and fiddle with my Tumblr settings and put some GD words on the screen was my exhaustion with explaining to everyone, yes, I have a genetic disorder, yes, I need my cane to walk, yes, I’ll have it forever. And having to recap my doctor’s appointments, reactions to medicine, physical therapy, to friends, family, colleagues, etc etc. So I’ll be putting all that here. It occurs to me now that will be helpful not only to keep me from having to talk about my illness over and over, but will also help me keep track of it all.

I will hopefully I also post other stuff here. Weird stories from work, funny stories from work, stuff about The Magicians and Marvel and the Whedonverse. Hopefully some artwork and fiction. But I’m not getting ahead of myself. One evening spent at a keyboard does not a habit make. 

I hope this will also serve as an outlet, as the description says, for all the physical dynamism my life has contained up to this point. I have always been on the front lines of any field I was in, never sitting behind a desk. I have always been very kinetic, I focus best when I’m moving, doing something with my hands, being active. I feel most proud of something I built, a room I cleaned, an activity I conquered. I simply can’t do that anymore. Not that there won’t be days I can be physical, but I can’t rely on my mobility for my sanity. 

Once, when I was a kid, I fell out of a tree. A maple tree in my backyard, a climbing tree into the crook of which one of my older siblings had at one point wedged a 2x6 board, forming a small platform. By the time of this story, the trunk had grown up and around the board, squashing over it like a stomach over too tight pants.  I don’t remember exactly what I was doing when I fell, likely swinging on the rope swing I’d masterfully constructed by tossing a rope over a branch, tying a knot in it’s doubled halves at waist height, and then sticking a piece of firewood above the knot, creating a very tenuous “seat.” Perhaps I tumbled from the swing, or just from a branch. But I fell from some kind of height, flat on my back, onto the packed dirt. 

I remember the impact, having the wind knocked out of me. That’s always so scary when you’re a kid, being unable to breath, in shock, not sure if you’re really alive or dead in that moment. Gradually, you get your breath back, usually to find you’re ok. But when I fell out of the tree, my breath returned momentarily, but I still couldn’t move, couldn’t speak, and was in terrible pain. I was aware enough in that moment that I thought I’d injured my spine in some irreparable way, and that I’d lie there, unable to speak or move, until my mother noticed my absence, possibly not for hours. It crossed my mind that I had hurt myself in a fatal way, that I would die gasping in my own backyard, at 9 years old, alone. The pain was so great, to my young mind, as to be inexplicable if it wasn’t a precursor to death. 

When I was 23 years old, I awoke in my bed in a similar situation. My body was wracked with pain, seemingly from nowhere, and I couldn’t move, could barely breath. This was my first adult experience with what I now know as Ehlers-Danlos Syndrome. The pain faded enough, eventually, for me to rise, get help. Though no one could explain why everything hurt now, all the time. My spine, my knees, my hips, my hands. My hands hurt too badly to hold a book. I remember the day it got that bad, how hard I cried. I saw a rheumatologist, who told me there was nothing wrong, except maybe I should eat less red meat? He’d read a study that it caused inflammation? 

It would be six years from then before I heard the term Ehlers-Danlos. But in those years, and after, there were many moments of pain so intense as to make me lose hope. Moments when I felt helpless, overwhelmed, and alone. Paralyzed by the pain and the fear of more pain. And I would think of that day I fell from the tree.