Monday, August 30, 2010

Devo Diary Chapter 19

Rollerboy Part 5

Nov 2000

The second time I drive out to visit Rollerboy for the weekend, we take a trip to Bessemer Historic Village, one of those living history open-air museums. I'm a little surprised he even suggests it, because he clearly thinks anything educational is boring and lame, but I guess he feels we have to do date type stuff. Or maybe he's trying to humor me.
Anyway, I don't think too much about his motivations, because I have a great time. I love wandering through shops on the old-time-y main street: the cooper, the clock maker, the general store, the smoky smell of the blacksmith. At the dry goods store, we gorge ourselves on penny candy.
As we're going down the wooden sidewalk, we pass a teenage girl in a wheelchair, and a man who must be her father strikes up a conversation with Rollerboy. He asks all kinds of questions, like when he was injured, where he did rehab, where he gets replacement parts for his chair. Rollerboy is surprisingly patient with them. I've seen him give surly, short answers to these kinds of questions from strangers, but now he's being really friendly and helpful. The girl and her younger sister watch shyly, not saying anything at first.
The dad comments on how cool and sporty Rollerboy's chair looks, and the girl chimes in, "Yeah, it's stripped down to the bone."
I look more closely at his chair, comparing it with hers. It's true--he doesn't have armrests, push handles, anti-tip wheels in the back, or any extra frame parts. Under the seat, there's just the axle and the footplate, that's it. The seat is tipped back so his knees are slightly elevated, and the wheels angle sharply out. Not only does her chair look bulky and heavy, but it doesn't seem to fit her right. She's sitting awkwardly upright, looking like she might slide off to the side despite the seat belt fastened loosely around her waist.
Rollerboy takes the compliment about his chair graciously, pointing out some of the features of his chair. "I used to have the camber on the wheels even wider, but I narrowed it up to fit in her apartment," he says, waving a hand in my direction.
For the first time, they notice me. "Oh, you're his girlfriend?"
"Yes." I'm glowing with pride. Yes, that's me, the girlfriend of the guy in the wheelchair. I'd like to think they are impressed with how normal our relationship is.
"So how did you meet?" the dad asks. Suddenly this is more attention than I want. I'm certainly not going to tell them about devotees, or that we met on a devotee chat site. I don't even want to say we met online. Only creeps and losers date online. We've already decided not to tell people how we met, so I come out with our agreed-upon lie: "Oh, you know, through friends." As I expect, it's a good enough answer that doesn't invite further questioning. He's really not interested in me anyway.
Later on, in Rollerboy's car as he's driving us back to his place, I say, "It was really nice of you to talk to that girl."
He shrugs. "Yeah, I know who she is."
"You do?"
"I mean, I don't know her but I know of her. She got shot standing on her front lawn. It was all over the news here about a year ago."
"Oh my god, that's horrible."
"Yeah, she's only like fifteen or so. On the news they said it was some gang thing, probably they were aiming at someone else and she got hit by accident, but they never caught the guy."
"Wow." I'm reeling at the horribleness of it all. That poor girl, just minding her own business, getting shot out of nowhere. And so recently too, no wonder she doesn't have her chair set up very well. But still, it bothers me that she didn't get better help in rehab.
I look out the window, trying to ignore the way we're sliding in and out of lanes, leapfrogging ahead of all the other cars. I can't stop thinking about that girl. What would her father have said if he knew I was a devotee? What would she have said? How can I be attracted to something that causes so much suffering? I don't say any of this to Rollerboy.

The next weekend, he comes to my place and we have to go through the whole rigmarole of getting him up and down the insanely steep driveway so he can bypass the double flight of stairs and get in the apartment by the side door. It really hasn't gotten easier with practice--it's still traumatic for both of us. Every time, I'm grunting and whimpering, afraid we're both going to go rolling into the very busy street and get run over, and he's cursing me.
Usually he forgets about the driveway as soon as he gets in the door, but this time he's pissed off about something else. He wheels in angrily, washes his hands angrily, and throws himself onto the couch angrily.
"What? What is it?" I ask, but I have to pester him repeatedly before he answers.
Finally, he bursts out, "Those fucking devotees have posted my photos all over the internet!"
"Where? What sites?"
"Paradevo and one other, I think it was called Dev Girls."
"Oh yeah, those are my sites." It just slips out; I don't even think about how it sounds. His eyes go huge and his jaw drops open as his face is filled with rage.
"Those are YOUR sites?!"
"I didn't post those photos!" I try to reassure him, but it's too late. It takes nearly half an hour of arguing back and forth to convince him that I'm not the one who posted those photos, that I would never do that without telling him, and that there are other people involved with those sites.
And the thing is, I can't even remember seeing those photos. I certainly have wasted hours of my life looking at photos online, but since I starting seeing Rollerboy--no, even earlier, since we started emailing--I haven't felt like it. I just never looked closely at the photos on those sites. If I had noticed earlier, I would have told him.
Now I'm curious, so I dial up the internet and go to the photo page on Paradevo. There are a handful of photos, not that many. No Rollerboy.
"I don't see any of you." I turn to him, sitting behind me on the sofa.
"I wrote to that guy and he took them down," he says petulantly.
"You mean Lee? Ok then. He was the one who posted them. Did he say where he got them?"
"I don't know, some dude." He then tells a long, rambling story about a person he was writing to online who asked him for a lot of photos. He thought it was a girl devotee, but it later turned out to be a gay guy. He punctuates the end of the story with, "That fucking faggot! If I ever meet him in real life, I'll fucking kill him."
"Ok, ok." I try to calm him down. "Lee took down the photos, so it's ok now, right?"
"The one on the other site is still up."
I haven't looked at the Dev Girls website in ages, not since Cindy disappeared with the password, but I pull it up now. Sure enough, there is a photo of Rollerboy, one of the same ones he sent me. How did I never notice that before? I promise to try to get in touch with Cindy and get her to take it down.
It's no use, of course; she is long gone. The email I write to her bounces. I'm so angry and frustrated with her for being so irresponsible, just abandoning that site and not even telling me or giving me the password to work on it myself.
A week goes by, then another, and Rollerboy finally seems to believe that I didn't post the photos, but now every time we talk or get together, we end up arguing about devotees. It's this long, drawn-out fight in slow motion that is fucking exhausting. He keeps saying I'm only interested in him because I'm a dev. I admit that it's the reason we met but I'm dating him because I like him, not his disability. Not just his disability. He doesn't believe me. I don't know what I can say to make him stop doubting me.
"All you devotees are the same," he sneers at me over a dinner of take-out Taco Bell in his apartment. "You just want to see me struggle."
"What? When did I ever say that?"
"Diana said it. But you were thinking it."
"Who the hell is Diana?"
It takes some prodding but eventually he comes out with a mumbled, disjointed story about emailing with some middle aged married dev on the other side of the country. He sent her some photos but she has been pestering him for a video.
"'Send me a video of you struggling. Doing something hard for you,'" he recites in a mocking tone, waving his hands.
"When have I ever asked you to do that! I would never!" He listens to my indignant denial with narrowed eyes, still not buying that I'm not like that. "So stop emailing with her if it makes you so upset!" I continue. "You don't owe her anything. Just tell her no and block her emails." I don't understand why he he's so intent on writing to random devs. I'm not jealous, after all, I'm the one here in his apartment. But is he really that desperate for dev attention that he'll keep emailing even after being insulted? Even knowing that he might be tricked or have his photos stolen?
Eventually the message does seem to get through, and once he stops emailing other devs, the arguments about devs stop too. For now.

still November 2000
Rollerboy asks if I want to go to the Ability Expo with him. It's a weekend long convention for companies selling adaptive equipment, held in the industrial nowhere zone an hour south of Raser City. Hell yes I want to go. I take it as a sign that he's gotten over his resentment of my dev nature.
He comes to my place and we both drive down to the Expo together on a Saturday afternoon. The renovated warehouse space is filled with big vendors like Quickie and Invacare as well as small, specialized companies like Frog Legs. They're all giving out fliers, brochures and freebies, and I acquire a big collection, pleased with myself for learning all the brand names and the details of wheelchair design.
The one thing Rollerboy is really interested in is the hand bike. The company selling them lets him take one for a spin, riding around in a circle in a big open space at the far end of the warehouse. He takes to it right away, whipping the chair around in tight, fast circles, lapping a middle aged man who is struggling to work the hand pedals, even though he seems to be only a para. For the first time, I see a real trace of how physically gifted his is. Before his accident, he was good at sports and great with his hands, fixing cars and doing construction with his father. He's always talking about how frustrating it is not to be able to do any of that anymore.
"I NEED one of these!" the middle aged para cries out happily to his wife, even though he's still barely making it go.
The wife turns to me with a sickly sweet smile. "Were you married before his accident?" she asks me, out of nowhere.
I find it hilarious that she assumes this can be the only scenario in which we are together. "Oh no, nothing like that," I say breezily. "I've only known him a few months." She looks blank. "Actually I'm really only in it for the sex," I add for good measure.
She clamps her mouth shut and turns away. Rollerboy and I share a good laugh about it over hot dogs and soda at the concessions booth. We imagine their reaction if they knew about devotees, and I wished I had come up with an even more shocking reply.
Rollerboy doesn't even ask the sales rep about buying the hand bike. It's way too expensive.
Later, in the bathroom as I'm washing my hands, I see a very attractive, stylish young para woman at the sink next to me.
"My hands always get so dirty in here," she complains. I give her a friendly smile but suddenly I'm feeling bad about being a devotee again. What would she say? I'm sure she wouldn't like it.
When I get home, I stash the brochures I have collected in a drawer, like they were porno mags.

The next weekend Rollerboy comes to visit me again, and we decide to take a bath together. This is something I've been wanting to do for a while, ever since he admitted that he has not had a bath since his accident, only showers. At his place, he has a big padded shower seat like a sofa that takes up most of the bath. I don't have anything like that, but if we could just get him to the bathroom, we could take a sexy bath together.
"Yeah, I think I could scoot on my butt," he says, surveying the long hall, too narrow for his chair to fit. Using the bath mat for padding, he transfers out of his chair and onto the wood floor. He goes backward, pushing with his arms then pausing to grab his legs and pull them up, over and over. It takes a long time, but eventually he reaches the small, green tile bathroom.
"This is it," I say with a dramatic flourish. He eyes the rim of the tub, and even though it's not that high, decides to use a chair to get in. I grab my wooden chair, the only chair I own apart from my desk chair, and wedge next to the tub. He transfers up onto it, then takes off his clothes, and slowly, slowly lowers himself into the tub.
As soon as he is in, I realize that this tub is not really meant for bathing. It looks like a regular tub, but actually it's just a base for the shower--it's much too short and shallow for a decent bath. I try to get in with him but there's barely any room and the water only half covers us.
Still we try to make the best of it. He remarks how his butt floats, making him feel like he's about to flip over in the water.
"The water feels good," he admits. "Relaxing."
But soon the water is getting cold and it's time to get out. No problem, I think, he can get out the same way he got in. He tries to transfer up to the edge of the tub but can't quite make it.
"Here, let me help you," I offer. I stand behind him, one foot in and one out of the tub, hook my hands under his armpits and try to heave him onto the edge of the tub.
A second later, I'm doubled over in agony, an unbelievable stabbing pain my knee. I must have twisted it when I tried to pull him sideways. The pain is shocking in its intensity, and it's all I can do to collapse naked into the chair, unable to move. I'm stunned at how incapacitated I suddenly am, and for the first time, I start to seriously worry. What have I done? How the hell are we going to get him out of the bath?
Rollerboy watches me writhing in pain and curls his lip in contempt. "Fuck it, I can do it on my own," he snarls. I feel horrible, but I'm going to feel a whole lot worse if I end up having to call 911. I toss a towel over the edge of the tub and hold my breath as he slowly hoists himself up, arms shaking and butt swaying. It takes him a few tries because he can't get any traction with his feet in the water, and his legs keep kicking out in front of him like floppy anchors. But finally he makes it, and I help him keep his balance until he can transfer onto the floor.
By this time my knee has recovered enough that I can stand up, so I offer to help but he refuses. He chooses to scoot back down the hallway again, naked and wet, with only the bathmat cushioning his butt. It takes even longer this time, because now he's going backwards. With each painful slide, he's picking up more dust and debris. I never noticed how dirty the hallway is. So much for the bath, now he's dirtier than before he got in.
I follow behind him, wringing my hands and offering again to help, each angry expletive from him like a dagger in my guilty heart.
"Fuck," he mutters, resting between shoves and rocking from cheek to cheek. "This is fucking killing my skin. I'm going to get a fucking sore on my ass."
"I'm so sorry," I whimper, but he ignores me. Why did I talk him into this? I should never have suggested it. I'm so mortified at my stupidity and selfishness.
After what feels like a million years, he finally reaches the safety and comfort of his chair at the end of the hall, and once we're both dried off and dressed, I apologize again.
"Whatever, it's ok," he waves me off. Before going to sleep, he stretches out on the bed and checks his skin, but it seems fine, and my knee has recovered too. At least I haven't caused any lasting physical damage. We go to bed without talking much at all.

Dec 2000
In between my classes and visiting Rollerboy, I've been attending weekly rehearsals with the Lester State University Adult Chorus. I'm enjoying singing real music again, the Bach Magnificat, but it hasn't been quite the source of new friendships that I had hoped. At least half of the other members are closer to my parents' age, and the younger women all seem to have formed a mean girls' club. Even though I can tell how fake they are being when they say, "Oh, we should all get together some time!" a big part of me still wants to be friends with them. I can't help sharing details about my life with them in the course of ordinary small talk, and as our Christmas concert approaches and we have extra rehearsals to prepare, there is a lot of down time as we sit on the risers divided by sections.
"Is your boyfriend coming to the concert?" one of the mean girls in the soprano 1 section asks.
"No, it's not his thing," I reply, trying hard to sound casual about it. I have already decided that it doesn't matter if Rollerboy comes or not. In fact, I would rather him not be there than force himself to go and tell me how lame and dorky it is. I offered him a ticket, but he said no in no uncertain terms. It's ok with me if he doesn't like classical music. We don't have to like the same things.
The mean girl doesn't reply, but just stares at me pityingly.
The concert goes great, and it feels so good to be really singing, just pumping out the sound with all my heart. I can't help but glance at the handicapped seating in the front row and imagining Rollerboy there. But it's ok that he isn't.

After the concert comes a blur of final papers and exams then somehow I've finished my first semester of my new graduate program. Following my now well-established pattern of avoiding my family during the holidays, I invite myself to fly out to Kara and Nam's house for Christmas and New Year's. After briefly flirting with graduate school on the East Coast, Kara dropped out and they moved back to the Midwest and bought a house. They were my best friends in college, and I can't believe it's already been seven years since we graduated.
Kara and Nam's house is impressively huge, but the tradeoff is that it's in the middle of nowhere, a two hour drive through desolate cornfields to the nearest small city where Kara works. They set up a big live Christmas tree in the living room under the stained glass window that Nam refers to as the Eye of Sauron. Kara and I spend several days preparing a lavish Christmas dinner. With the snow outside, the fire in the fireplace, playing with their cats, it all feels so cozy.
On the last day of the year, another friend from college, Borek, drives down from Central City to visit. I haven't seen him since I left College Town, since the humiliating end to my relationship with K.
Borek is a crazy artist, a true, inspired-by-the-gods creative genius. In college he labored over immense Renaissance-style oils on canvas of Lovecraftian subjects such as Huntress Riding Dogs and Sacrifice at the Altar of Eris. Now he's making polyresin statues to sell at Ren Faires. As a present, he gives me a 12 inch figure of a squirrel shaman with a staff and skull crown. I love it, but I can't help but remember him in college, worried that taking money for his art would be wrong.
"I thought you didn't want to sell out?" I ask.
He squints at me and shakes his head in disbelief, snapping his waist-length braid. "I said that? What was I thinking?"
We reminisce for a while about other friends, then he asks what I've been up to lately and I tell him about Rollerboy. I've gotten used to the way it takes a few minutes for the information to sink it, so I repeat myself.
"He's a quadriplegic. But not, like, full. He can still use his arms, just not his fingers."
"He's in a wheelchair?" Borek asks, still not quite getting it.
"Yeah, but not an electric one, a manual push one."
Borek's eyes get wider and wider. I can see him making the connection with K, my first blind boyfriend. I can practically see him connecting the mental dots. Beside me on the couch, Kara is shaking with silent laughter.
"And you... you..." Borek splutters.
"I think it's fucking sexy."
"Yeah she does!" Kara chimes in gleefully.
Borek stares at me, mind blown, but not in a bad way. "Whoa," he breathes, blinking. "Whoa."
I blush hard, simultaneously embarrassed and relieved to be telling him.
"So how did he...? why is he...?" he asks.
"Car accident," I reply flatly.
"Whoa," he says again. "You heard about my accident, right?"
I didn't, but apparently Kara and Nam did, and they all three fill me in. Two years ago, Borek was in a big pile-up on the terrifying loop around Central City while driving a clunky old van with no air bags. He smashed his face on the steering wheel and one of his eyes popped right out of the socket. An EMT put it back in.
"I have a metal plate right here," he says cheerfully, pointing to a small scar on his right cheekbone. I'm stunned that I had no idea. He doesn't look at all different to me.
"But no brain or spinal cord injury," I confirm. "You're super lucky."
"Yeah, but maybe if I had then you would be into me," he teases me.
I lean forward to swat him on the knee. "Oh stop it, it doesn't work that way." We all laugh.
Later in the evening, we go out to a bar to celebrate New Year's Eve. I wear a tight black sweater with a huge fake fur stole and matching gloves, which feels very elegant. Before leaving the house, we all take photos together, and Borek flings himself to the floor in front of me, laughing gleefully as I plant my shoe on his chest in full dominatrix mode.
For a moment I wonder if he was ever seriously interested in me. I doubt it, at least not enough to sustain an actual relationship. We're just too different. Sure, we like a lot of the same movies and art, but our personalities are really different.
And what about me and Rollerboy? Our personalities are also different, and we hardly like any of the same things at all. But somehow we've been making it work so far. Is it just about the sex? I'm really not sure any more. The more I talk about him with my friends, the more I feel like there's really a connection between us.

Thursday, August 26, 2010

Devo Diary Chapter 20

Chapter 20: Rollerboy part 6

Jan 2001
After my trip to visit my old friends from college, I return to Raser City and a new semester of grad school feeling good. I set up the squirrel shaman statue Borek gave me in a place of honor on a bookshelf in my tiny studio apartment. When Rollerboy comes to visit, he spots it right away.
"Ugh, what the hell is that?"
I explain how my artist friend made it and gave it to me as a gift, but he's unimpressed.
"I feel like it's staring at me," he complains. "It's fucking creepy."
"It's not creepy; it's awesome," I retort, feeling slightly wounded.
"There's something wrong with you," he says, dismissing my artistic taste with a sneer as he turns away and wheels over to the couch. I watch as he lifts one foot then the other onto the carpet, scoots forward to the edge of the seat, then swings his butt onto the couch. I sit down next to him and put my arms around him, trying to ignore what he just said. I missed him while I was away, and it feels so damn good to see him again. Those blue eyes get me every time. I kiss him long and hard.
"Did you miss me?" I ask. He nods, his forehead pressed up against mine.
We don't really talk again for a while. The sex with him is so good, and each time it just keeps getting better. I love the feel of him against me, the combination of his strong arms and weak hands, the unique way he moves his fingers by bending his wrists. I know the location of every scar, like a secret map.
He transfers back to his chair, then to the bed. We both like it a bit rough, pretending to wrestle in the bed, rolling around and around. I still can hardly believe that this guy wants to be with me. I feel like the luckiest girl in the world. I think of the contrast between his upper body, writhing and gripping me, and his still lower half, and start to let myself go, sinking into my dev fantasy come to life.
Rollerboy breaks our embrace and stares at me. "Knock it off."
"What?" Muzzy with desire, I have no idea what he's talking about.
"Those noises you were making, like 'uhhh, uuuuhhhh,'" he says, imitating my voice in a mocking tone.
"So? I thought guys like it when girls make noise. Isn't porn full of that kind of thing?"
"Yeah, but you're, like, faking it."
"What?! No I'm not!"
"Yeah, you are. No one makes noises like that for real."
I pull back to look him in the eye. "I wasn't faking! Do you really think it's impossible for someone to be that turned on for you?"
He looks away. "That's not it. You just sound totally fake, ok?"
"Whatever." I don't want to fight. We go back to having sex--even toned down, I enjoy it anyway.
I feel like I have gotten the hang of SCI sex. Strangely, the biggest adjustment for me was about his erection. He only gets hard from direct stimulation, physical only, nothing mental, and the minute I stop touching his penis, it gets soft again. I never realized how much meaning I attached to a guy's erection as a sign that he's into me. For a while, I kept catching myself wondering why he wasn't seeming turned on, then reminding myself it doesn't work that way.
Because he has an incomplete injury and has sensation all over his body, he doesn't have the extra-sensitive ears or neck that I heard some SCI guys get. He can still feel his penis, and he wants to come every time we have sex, even though it takes a lot of work to make it happen. I'm happy to oblige.
Even though we have sex a lot, it's mostly oral or mutual masturbation. We don't do penetration very often, because I'm not on birth control, and using a condom makes it difficult to get the intense sensation he needs for a reflex orgasm. But I'm hesitant to do it without the condom because even though most SCI guys have low sperm count, he did get his ex-girlfriend pregnant a few years ago. She had an abortion, but I really don't want to go down that road with him.
So I decide to look into a prescription for birth control pills. I know I'm a bit socially slow, considering that I'm twenty-seven years old and have never been on the pill, but I never had a boyfriend that lasted long enough to consider it. Except K, but we had to use condoms because we were never monogamous. The other reason I have hesitated until now is I get migraine headaches, and I've heard the hormones can mess you up.
I head down to the student health clinic, intending to just talk it over with a doctor and get more information. But it turns out that if you tell a doctor who sees college girls all day that you want birth control, you are not walking out of that office without a prescription. The doctor, a grey-haired no-nonsense Chinese-American lady, waves away my questions and shoves the scrip in my face. I go home with several circular pill packs and start taking it that day.

The next weekend, it's my turn to drive the three hours out to East Bessemer to visit Rollerboy. I've somewhat conquered my fear of driving. At least now I have a system of laying out snacks and CDs on the passenger seat so I can grab them easily and relieve the tedium a little. It's a chilly, gray winter day. I make it through the traffic around the university and merge onto the highway when it starts to rain. I turn on the windshield wipers, but nothing happens.
I start to freak out slightly. I can't pull over, and if I take an exit, I'll get stuck in the same weekend traffic I just crawled through. I drive on, trying to make up my mind what to do. The rain gets harder, but I'm going so fast it just rolls away. It's not so bad, I realize. I can see just fine, and I really don't want to turn around and go home. I've been thinking about Rollerboy all week, looking forward to seeing him. The disappointment would be crushing. In the end, I just make the whole drive out there without wipers.
When I arrive and tell Rollerboy, he seems impressed. I was half expecting him to tell me I'm lame for even worrying about it, but to the contrary, he's touched that I wanted to see him so badly. "That was really brave of you," he says, hugging me. It feels so good.
On Sunday afternoon when it's time for me to leave, he comes out to the parking lot with me to say goodbye.
"I just hope it doesn't start raining again," I say nervously. I've been worrying about this drive home since I arrived.
"Where's the fuse box?" he asks. I have no idea, but we soon locate it under the dash, next to the door. I pop off the cover, revealing two rows of fuses. He's sitting in his chair next to the open door, and I'm in the driver's seat. He leans over and whacks the fuses with the side of a half-open hand, and suddenly the wipers start moving again.
"You fixed it!" I squeal with delight and relief. "I love you!" I fling my arms around his neck and kiss him on the cheek.
"I didn't do anything," he says, laughing a little.
"Yes you did! At least now I know it's the fuse, I can go get it fixed tomorrow."
I feel so giddy with relief I don't even realize until I'm halfway home that I just said "I love you" to Rollerboy for the first time. Shit! The first I love you is supposed to be a big deal, not "thank you for fixing my windshield wipers." Did he even notice? Is it too soon? I decide to play it cool and not mention it again, at least not for a while.

February 2001

Over a long weekend, Rollerboy and I decide to drive to Arcadia and stay in a fancy resort hotel. I've never been on a romantic getaway before, and now that I'm on birth control like a real grownup lady, I feel very sophisticated. Having to call ahead to book a wheelchair accessible room is like the devilicious cherry on top.
"My boyfriend uses a manual wheelchair. We need to be sure the room has a fully accessible bathroom," I inform the bored-sounding receptionist in my most officious voice.
"Yes, we have you down for one handicap room," she assures me.
Since Arcadia is west of Bessemer, the plan is for me to drive to his apartment and leave my car there, then he drives us over the mountains to the resort. As usual, he's weaving in and out of lanes and tailgating, one quad hand on the wheel, with his seat leaning back like he's in a game of Gran Turismo. I try not to worry about how fast we're going, but as soon as we get up into the switchback roads in the mountains the snow starts coming down hard and the panic sets in.
"Shouldn't we slow down a little?" I mutter as we pass a car embedded in the huge pile of snow on the embankment.
"Pff, it's fine," he snorts. "I don't plan on getting in a wreck today." He says it like it's a conscious decision he makes every morning. Today: live or die? Maybe that is how he thinks of it. It's not a reassuring thought. I grip the handle with white knuckles and scan the road for black ice.
Seeing my discomfort, Rollerboy guns the engine and takes his hand off the wheel for a second, laughing as he sees my panic-stricken face. "Imagine if my hand slipped! I'm a quad--it could happen so easily! Ha!" He waves a limp hand in the air and laughs again. "Relax, it's fine."
He's right, it is fine. We arrive at the hotel without incident. I stagger out of the car with weak knees.
Despite dire warnings I read on the internet about unreliable hotel accessibility, the hotel room is also fine. More than fine, it's gorgeous--a huge, open suite with a plush white carpet, a Jacuzzi and a stunning view of the mountains.
The second evening, we fill up the Jacuzzi and slip in together. It's so big and deep, it's almost like a small swimming pool.
"How is it?" I ask.
"Nice. Weird but kinda nice. I still feel like my butt is trying to flip me over. It's like trying to sit on a beach ball." We float around in the water and embrace, but there's no way to get enough traction to actually have sex.
Once again, the mood is totally broken when we try to get out. He can't get enough leverage to pull his butt back onto the edge of the tub. I try getting out and lifting under his armpits, but I'm not strong enough, and he flops around in the water like a wet noodle. He starts cursing, and I can hear the panicky edge to his voice. I'm cursing myself too. I can't believe I've made the same mistake a second time.
Eventually, we figure out that if I sit in front of him and brace his legs, he can lift himself up and back. Once he's precariously balanced on the edge of the tub, I jump out and help him balance as he transfers to his chair. The white carpet is soaked by the time we're done, but I figure that's the hotel's problem for surrounding a tub with shag carpeting. I'm just relieved to have gotten through another tub incident without having to call for help, which would have been way worse than a wet carpet.

Sex is still our main activity, not just at the hotel, but every weekend. Sex without condoms is easier, but not as easy as I had hoped. It still takes a lot of really hard, fast rubbing to make him come, even with Viagra. Penetration alone just doesn't do it. I've gotten a bit more adept at my bouncing technique, but my legs get tired after a few minutes and it's hard to keep up the pace. We get the idea that maybe a sex swing could help. Rollerboy buys one online, but installing it requires a trip to Home Depot to buy a stud finder and electric drill.
The whole process is occasion for many juvenile jokes (stud finder, haha). Even something as stupid as saying Home "Dehpo" instead of "Deepo" is enough to crack us up for hours. I'm the one who has to drill the hole in the ceiling over the bed, of course, getting drywall and sawdust in my eyes and hair and all over the bed.
As it turns out, the setup is the only fun part. As soon as we get the swing hooked onto the ceiling and installed, it's obvious it will never work. When I get in it, I sway gently six inches above his prone form. We try lowering it, but the straps go slack and don't hold me up enough to make any kind of difference. We consider trying to get him in it, but I'm not strong enough to lift him and without core control, he's just too floppy. It's like trying to get an octopus into a hammock. I take down the swing and ball it up on the bedside table where it collects dust.

March 2001

I arrive at Rollerboy's apartment Saturday afternoon to find him pushing back and forth in the kitchen, in a state of seething rage.
"That fucking asshole! I'm gonna kill that faggot!"
"What are you talking about?"
"That fucking devotee!"
"Can you please just explain to me what is going on?"
He pushes angrily over to his computer, which is on the dining room table right next to the tiny kitchen area. "Look at this bullshit!" he exclaims, waving a hand at the screen.
I see a Geocities blog with a photo of him and some text underneath against a light blue background.
"Some asshole stole my photo and made up a fucking blog about his life as a quad. It's all about how hard everything is, how much I have to struggle." His voice drips with resentful sarcasm. "Give me a fucking break! I got this quad shit down, motherfucker. It ain't a struggle. Like he even knows what it's like. And the worst part is he made me gay. What the fuck!"
"Do you know who did this? How did he get your photo?"
"Yeah, I know. It was some fucking fag in Utah who pretended to be a devotee chick."
"I thought you decided to stop writing to those devotees online." Instead of answering he just glares at me. I bite back an I told you so and instead say, "You can try writing to Geocities and ask them to take the page down. I'm sure it's a violation of their terms of service."
He starts pacing around in his chair again. "Whatever. Like they fucking care. I can't believe my face is on this bullshit!"
"At least just try writing to them."
"I'm going to drive out to Utah and fucking kill that motherfucker."
"Please, just send an email to Geocities. I can look it up for you."
"I bet I could find his address online. I bet he thinks that because I'm a quad I can't shoot a gun. But I could. I just need a mount on the side of my car. Set it up and just pull the trigger. He thinks I couldn't but I fucking can. I don't need my fingers to blow him away. I can do it with my hand."
The conversation goes in circles like this for a while longer, me trying to come up with a practical solution to get the site taken down, and him fantasizing about shooting the person he thinks is responsible. I understand why he's so angry, even if most likely no one he knows will see the site. It's a violation, a kind of identity theft. It sucks, and I feel angry for him too. But the glee with which he turns to fantasies of violence is also disturbing. On the other hand, he doesn't own a gun, and as far as I know, has never actually used one.
I look up a tech support email for Geocities and give it to him, but I don't know if he ever writes, or even if the site gets taken down. I don't want to get him worked up again by asking about it. He doesn't mention it again.

April 2001

I wake up one morning with a pounding headache. I've had migraines since I was a kid, but this is nothing like that. This feels like a metal stake being driven right through the center of my brain. It feels like my brain is going to explode. The slightest exertion makes it pound even more, like an aneurysm about to blow. The pain is so intense it causes my eyes to water and my nose to run.
I go to the urgent care in the student health clinic, where a doctor gives me a shot of something that cures it almost instantly. But foolishly I don't get the name of the medication. Two days later, the headache is back. I go to urgent care again, but this time there's a different doctor. I tell her about the magic shot, but she looks at me like I'm hallucinating.
"It sounds like a migraine brought on by birth control pills," she says. "We usually don't recommend hormonal birth control for someone with your history of migraines." I'm seething because this is exactly what I was worried about but the gyno who prescribed them to me gave me the brush-off.
"It doesn't feel like a migraine," I insist. "It feels like a blood vessel about to burst."
"That's not how it works. You typically don't feel anything." That's not very reassuring but ok. "Here, I'm switching you to a progesterone-only birth control. You should feel better soon."
But I don't. The headache continues around the clock with no relief. If I stay very very still, it's only just bearable, but the second my heart rate rises even the tiniest bit, it's excruciating. Even rolling over in bed triggers the pounding, enough to wake me out of the deepest sleep.
For the first time in months, I tell Rollerboy I can't drive up to see him on the weekend. It's all I can do to keep up with my coursework. A week passes in a painful haze, then two. I see multiple doctors who give me an array of garden-variety diagnoses--migraine, cluster headache, tension headache. I have an MRI but nothing unusual shows up. The progesterone-only birth control makes no difference, so I quit it altogether, but still the pounding through the center of my skull continues.
In the third week, Rollerboy drives down to visit me. At first he's kind and solicitous. "What do you wanna do?"
"I don't know, something relaxing that won't get my heart rate up."
"So no sex, huh?"
"I'm afraid not."
I give him an apologetic look, but his face falls. We both suck at hiding how we feel.
Since it's a nice day, we decide to go to a little park near my apartment. It's basically one small city block, a square of green grass ringed by trees. Some kids are playing soccer at one end. We settle down in the shade at the opposite corner. I carefully lie down in the grass and he transfers out of his chair to lie next to me. I spend the next hour trying not to move. If I lie completely still, the pain abates to a bearable level, the squeezing sensation in the center of my skull receding to the edges of my consciousness. But even the tiniest movement, the slightest shifting, and it all comes back, like a pickaxe through my head.
After another hour, Rollerboy starts getting antsy.
"Are you feeling better yet? Are you sure you don't want to go do something else?"
I put on my apologetic face again. "I'm sorry, I really can't."
He starts to make jokes about how "it's all in my head" and drop references to frigid housewives claiming to have "headaches," references as subtle as a stake through the skull.
We go out for a subdued dinner, then he opts to go back home rather than staying over. Normally I would be upset, but under the circumstances, I have to admit it's for the best. I can't face an evening of rebuffing his sexual advances, and even under the best circumstances, it's not that comfortable to sleep next to him in my Ikea double bed. His legs spasm at night while he's sleeping, not a lot, but enough to keep me awake. His foot will start going like a metronome--1, 2, 3, shake. And if I accidentally brush his leg with my foot, the spasms go crazy and wake him up, then we're both awake and cranky. I'm just too wrung out to deal, so we say goodbye after dinner and he drives back to Bessemer.

Through all of this, I'm still attending classes in my graduate program. Over lunch with my classmate Sarah (she of the glorious copper curls and Buffy superfandom), I fill her in on my latest phone conversation with Rollerboy.
"And then he said I need to just get over it! Like I'm faking or something." I poke at my pasta salad angrily.
"You'd think that having a disability himself, he'd be more sympathetic to your problem," she replies tartly.
I glance up at her uneasily. "It's not really the same, you know." I know where this is going.
"He isn't the only disabled guy out there," she ventures hesitantly. Sarah's been not so subtly nudging me to dump Rollerboy since she first met him a few months ago. I told her all about me being a devotee and she's cool with it, but she keeps pressuring me to find someone else. "He just seems like an unhappy person..." She trails off.
We've had this conversation so many times we don't even need to say all the lines. I kind of know she's right. But I love him, dammit. I just have to let things play out, see where it goes. Just like with K, I always hang on to the bitter end.
Rather than continue this futile line of discussion, I change the topic back to my headache. "It's so infuriating. There's literally nothing to see, so it's like there's no proof there's anything wrong. I feel like everyone thinks I'm making it all up. Even the doctors."
Sarah nods. "I feel the same way." She has thyroid disease, and often feels like crap for no outwardly visible reason.
"At least you have a diagnosis. All I get are shrugs. How long is this going to go on for? Months? Years? The rest of my life? Seriously, the pain makes me want to fucking kill myself." I'm sort of kidding, but my eyes fill up with tears.
"Go back to that one doctor and ask her to give you the shot again," Sarah suggests.
At the end of the fourth week, I finally follow her advice.
When I go back to urgent care, the doctor from the first time is there again. She gives me the shot, and within an hour, the headache is gone. I feel like I won the freaking lottery. I ask her what's in it (morphine? ecstasy?). She says it's a form of injectable acetaminophen. Seriously? I could have taken Tylenol all this time? But whatever, I'm so relieved I don't question it.

Friday, August 20, 2010

Devo Diary Chapter 21

Rollerboy part 7

May 2001

After I recover from my month-long headache, the rest of the semester goes by in a blur. I scramble to get caught up in my classes and finish my final projects. At the same time, the community chorus I sing in has another concert, this time the Schopfungmesse by Haydn. It's a magnificent piece of music and singing it makes me so happy. Once again Rollerboy does not offer to come, and I don't ask.
We still spend every weekend together. Sarah complains that I'm never available to do anything with her on the weekends, but whatever. I want to be with Rollerboy. If I wasn't sure about my feelings for him when we first started dating, I am now. I really love him. When we're together, it just feels right somehow. I hug him and it feels like home.
It's not just Sarah who thinks we should break up. I open up about Rollerboy, including my dev desires, to another classmate, a lesbian with spiky pink hair and tattoos, named Stephanie. The name doesn't suit her at all. Stephanie lives in a hip basement apartment with her girlfriend who looks exactly like her (except with undyed hair) and a map of the world on the wall with pushpins marking every city where they've had sex. There are a lot of pins. Stephanie is in one of the most high-pressure grad programs at Lester State but she does not give a fuck about anything. She's the coolest person I know. I really want to impress her, to prove to her I'm not like all the other prudes and dorks in our class, so I tell her everything. She is like "whatever" about whole disability fetish thing. But just like Sarah, she doesn't get what I see in Rollerboy.
"He's not stupid," I insist, answering a question she hasn't asked. "If I thought he was stupid I wouldn't be with him. He's just not, um, intellectual. Like, he doesn't care about book learning. It's refreshing, actually."
"Uh huh." Stephanie nods and stares at me blankly.
"We find plenty of things to do together."
"Yeah, but it's mostly you driving to fucking Bessemer, right? What do you do there besides go to the mall?"
I shrug. "I'm coming to appreciate life in the suburbs. When we first started dating we spent more time in Raser City but things are not that accessible around here. A lot of neighborhoods here don't have curb cuts, or the sidewalks are all broken up and hilly. The mall is much easier to get around. I don't mind spending time there."
Stephanie looks at me pityingly. "Oh, honey."

The next weekend I convince Rollerboy to come visit me. At first we alternated weeks but now it's like three to one I drive out to him. It's not just that my neighborhood in general is less accessible, it's the whole rigmarole of pushing him up and down my insanely steep driveway, and the fact that he can't get in my bathroom. I can't even consider moving, since I'm tied to a two year lease and the housing market here is so tight.
We go out for pizza for dinner, then go through the still slightly terrifying process of getting him in my apartment. Once we're inside, he announces that he has to empty his leg bag.
"My legs have been jumping around since we left the restaurant," he grumbles. I noticed it too, his knees going up and down, his feet tapping on the footrest like some impatient dance. If the bag gets too full, he gets autonomic dysreflexia, which is his body's reaction when something goes wrong below his injury level. Spasms are just the first sign. It also makes his blood pressure go really high, which is super dangerous. Like, potentially fatal kind of dangerous.
I run to get the plastic urinal bottle, but when he hikes up his pants, the leg bag is flat and empty. He looks up at me with fear in his eyes.
"Oh shit!" He starts tugging at the button on his jeans, pushing the palms of his hands together to try to grip the fabric and pull it open.
"What? What is it?"
"Oh shit, this is not good!"
"What is wrong?"
Instead of answering, he finally manages to yank open his pants, revealing his suprapubic catheter, a tube going right into his bladder, just below his navel. He pokes at the tube with a finger, moving it around, then pushes on his bladder, but nothing comes out.
"Fuck! The tube is clogged. Like, on the inside." We stare at each other, our eyes wide with panic.
"What do you want me to do?" I ask.
"This happened once before. I have to take it out and put in a new one."
"Do you have a new one?"
"It's in the trunk of my car. I'm so fucked!" He leans his head back, and I can see the sweat trickling down the side of his face. The dysreflexia is getting worse.
"I'll go get it," I say, grabbing his car key from his backpack.
"Wait," he shouts as I'm heading out the door. "Get me a towel first." I toss him one from the bathroom then run out the door and down the two long flights of steps in front of my apartment building.
Tonight we were particularly unlucky with the street parking. The only spot was way down at the bottom of the hill, the distance of what might be two or three blocks on a normal street. I sprint down the hill to his car and open the trunk. There is the catheter, in its white paper and plastic package, the only thing back there. I take it and run back up the street as fast as I can.
I come back in to find Rollerboy has wriggled out of his pants and somehow gotten the towel mostly under his butt. His whole upper body is broken out in sweat, huge round bullets covering his chest, arms and face. He pulls apart the connector to the leg bag, leaving just a short length of tube, branched up near the top. Then he opens up a valve on the shorter branch to deflate the balloon that holds the catheter in place. With a tug, he pulls it out. It's surprisingly long, and as the end comes out, urine seeps over his belly onto the towel.
I open the new catheter and hand it to him carefully, not letting the end touch anything. He inserts it and reconnects the leg bag, which instantly fills to capacity.
"Damn, look at that," he says. "No wonder." The spasms and sweating stop, and his color returns to normal as his blood pressure goes back down.
I throw the gunked up old catheter away in the kitchen trash and empty the leg bag. Rollerboy transfers onto the bed, and I throw myself down next to him. We're both exhausted.
He puts his arm around my shoulders and squeezes. "Thanks."
"For what?"
"For not freaking out."
"Um, ok, you're welcome." Secretly I think I did freak out a little. I feel guilty that this happened while he was visiting me, where he can't even get in and out of the apartment on his own. This would have been so much easier to manage at his place, where everything is set up for him. As we drift off to sleep, I reflect, not for the first time, how precarious life as a quad seems. It's like the doctors patched him up partway then said "Good luck with all that!" He could die from having to pee, or a pressure sore. Actually he knows someone who recently died because he fell forward onto his knees and couldn't push himself back up again. It seems so unfair.

June 2001

Since I created a devotee website with Lee, I've been feeling like it needs more content. I write up a bunch of reviews of my favorite books and movies, but it seems like the most hits on the site are from the stories. I think about writing some erotica, but I don't really feel like it's my thing. On the other hand, I'm still bummed about the terrible second season of Dark Angel. It could have been so much better. I think more about how much better it could have been, and before I know it, I've written some steamy fanfic of Max and Logan having hot para sex.
I post the story not only on Paradevo but also some Dark Angel fan sites, where it gets a decidedly mixed reaction. Some people seem shocked by the explicit sex, which is weird to me. Isn't the whole purpose of fan fiction to show the sexy times you can't see on TV? What's the big deal?
I also hear from a few sister devs, but most of them are deeply conflicted. One in particular draws me into a long email exchange about how she is determined to marry her able-bodied boyfriend even though the sight of a random guy in a wheelchair sends her into a weeks-long spiral of desire, obsession and guilt. I try to gently suggest that as long as she's fantasizing about passing strangers, maybe marrying this other guy isn't the best idea. She writes back a tortured defense.
"I don't know," she writes at the end. "I just want that house with a white picket fence and 2.5 kids."
"We don't get to have that," I reply. "These desires make us different, and our lives go in different directions. We don't get the white picket fence, but we get other things instead, like sexual fulfillment and experimentation."
Maybe it's a bit harsh. I understand where she's coming from. I want a husband and kids too. Rollerboy will never be that guy, not because he's SCI, but because that's just not his personality. But the white picket fence was never for me. If I weren't a devotee, I probably would have married my first boyfriend in college. We split up, he wanted to get back together, but instead I fell for K. And even though K brought me so much heartbreak, I know I would never have been happy with the other guy.
These thoughts about settling down, marriage and kids are taking on more weight because I'm about to turn twenty-nine. I don't feel that old. I feel like a kid still. I've never even lived with a boyfriend.
I try to bring up the idea with Rollerboy obliquely. I'm so sick of driving three hours each way to see him, and it seems like things would be so much easier if we lived together.
He shuts me down abruptly. "That would never work."
"Why not?" I wheedle. "I at least want to try."
"You have school here, you can't move to Bessemer," he points out.
"Ok, yeah, but what about you?"
"Ugh, I'm not moving to Raser City," he says like I'm asking him to relocate to the surface of the moon. I know he hates all the hipsters and the high rents and the crumbling sidewalks here, but I thought he might at least consider the idea. I don't want to argue, so I let it go.

For my birthday, I reserve a big round table at The Vine, a nearby bar/restaurant that has decent wheelchair access. I invite the mean girls clique from the chorus, and my friends Sarah and Stephanie from my graduate program. To my surprise, they all come.
Honestly, the chorus mean girls are not so bad; they've even been slightly friendly to me. It's the other girls in my grad program who are the super mean clique. I once ran into one of them at the supermarket in the evening with her boyfriend. They were just ahead of me in the checkout line, buying cheese, crackers and two bottles of wine.
"So you're going to Evangeline's party too?" the boyfriend asks, naming another grad school mean girl.
I stare at them blankly. "Evangeline's having a party?" His girlfriend loudly shushes him while elbowing him in the ribs, rolling her eyes in the least subtle way. Ever slow on the uptake, I don't fully get it until they have already paid and left, but even then I don't care, because Rollerboy is waiting for me in the car. I would never bring him to one of their lame grad student parties anyway, and I'd rather spend my time with him. But the more I think about it, the more I lose respect for them. Seriously, are we not adults? I thought people would outgrow that kind of junior high school behavior, but I guess not. Well, none of those assholes are invited to my party.
Anyway, I have my birthday party on a Saturday evening so Rollerboy can come. I really want him to meet more of my friends. I strategize to arrive early with him so he can maneuver around the tables before it gets crowded. The restaurant is big and open, no access issues, but he's still cursing as he pushes empty chairs out of his way.
"Look, here we are," I say cheerfully as we settle in. The hostess obligingly removes the chair from his spot. "See, no problem." I try to improve his mood by example. I really want this to go well.
Once everyone arrives, we're all seated around the table, with Rollerboy on my right, and one of the girls from the chorus on his right.  As we're starting on our salad course, Chorus Mean Girl #1 gamely attempts to make polite conversation with him.
"So what do you do?" she asks.
He glares at her. "I push a fucking wheelchair around all day."
I watch as she turns first white then red, and I can't help laughing. It's hilarious to me the way he uses his disability to shock her. Sarah looks uncomfortable, but over on the other side of the table, Stephanie is laughing along with me. I know I shouldn't find this so funny, or be so delighted with the mean girls' mortification. I should say something to smooth it over rather than laughing. But I can't help it. That comment totally makes the evening for me.

July 2001

I fly back east to visit my parents during the summer break. I've kind of been avoiding them since I started dating Rollerboy, but after going to see Kara and Nam instead of going home during the winter break, I really owe my parents a visit.
I usually think of my relationship with my parents as pretty good. We talk on the phone every Sunday, and I tell them about my progress in my studies. But I keep my dating life on a strictly need-to-know basis, especially after the way Mom freaked out over K. But as things get more serious, and as my trip home gets closer, I finally give in and tell her about Rollerboy.
"So I have to tell you, I've been seeing someone," I admit over the phone. My heart already starts racing and my palms start sweating.
"Really?! That's great! Tell me all about him!" I can hear the hopeful enthusiasm in Mom's voice and it kind of kills me a little. There's no way she's going to be happy about Rollerboy, especially after K. There are definitely going to be dots connected, and not in a good way.
"Uh.... what do you want to know?" I say, intentionally stalling.
"So what does he do?"
Ugh, this question again. Well at the very least, I don't want to make the same mistake I did with K, and try to hide his disability. I might as well come out with it right away. "He, um, he doesn't work right now because he's in a wheelchair, but he's going to school full time," I say in a rush.
There's stunned silence on the other end of the line. "A what?"
"He uses a wheelchair. He was injured in a car accident when he was a teenager." I don't add, drunk driving in a stolen car.
"Um, okaaaaaayyy...."
Shit, this is going even worse than I thought.
"So is this serious?" she asks, her voice flat, all the cheer from a few moments ago drained away.
"Uh, I dunno. It's kinda too soon to tell." Actually it's been almost a year, but I'm not telling her that.
"So are you teaching in the summer semester?"
"No, I don't have to start TAing until the fall." I'm so relieved to be off the topic of Rollerboy that I let it all slide, even though there is probably a lot more that needed to be said. I just can't bear to have these kinds of conversations with my mom. There are lots of things my parents keep from my grandparents. Why should I be any different?
That's the only conversation we have about Rollerboy before I fly home. Before I leave, Sarah helps me sort through the stack of snapshots I have of him, to pick out the best one to show my parents. We settle on one of him in my apartment, leaning forward with his elbows on his knees, and for once smiling rather than scowling. The wheelchair is very visible, but he looks more like a para than a quad, and his smile is bright and open. He looks friendly and handsome, like someone you'd say hello to on the street.
When I first get back, the topic of Rollerboy does not come up. I'm tired after the long flight, and I manage to fill the conversational space with small talk about the flight, what I want for dinner, how my studies are going, anything but that one topic. The days stretch on, and still we avoid mentioning him.
On the weekend, Mom, Dad and I drive out to a beach resort and stay in a hotel. My brother, who just finished culinary school and is working his first full time restaurant job, can't join us. Because it's just the three of us, we all stay in one hotel room with a sofa bed.
So there we are, just arrived in our room, sitting on the sofa that will later convert to my bed, staring at each other with nothing much to do. I figure this is as good a time as any to bring out my photos. I show them some pictures of my latest concert, my birthday party, and that carefully selected photo of Rollerboy. He looks so cute. How could you not like him in that picture?
My mother stares at the photo like it's something she scraped off the bottom of her shoe. Then she looks up at me and her eyes are snapping.
"Your father and I are very angry about this," she hisses at me.
Now the mature adult thing would be to calmly ask why my boyfriend's disability makes her angry, or perhaps to note that this is her issue to work through, and people with disabilities are human beings deserving of love and respect.
I say none of those things, and I certainly don't stay calm. I instantly regress to my rebellious teenage self.
"You can't talk to me that way! I can date whoever I want! I don't need your permission! Why do you always have to harass me like this? It's so unfair! Aaagghhh!" I trail off in inarticulate screaming and crying. If we were at home, now is when I would stomp off to my room and slam the door, but here there is nowhere to go. I sob on the couch for a while and no one says anything. Eventually I retreat to the tiny patio outside our hotel room and fling myself into a beach chair. I feel like even the furniture is mocking me. We came to this resort to have a good time, but I am utterly sunk in misery.
My parents go out for a walk to cool down, and I slink back into the room to retrieve my cell phone. I call Kara and Nam and pour out my heart to them.
"I knew it would be bad, but I had no idea it would be this bad!" I wail. "What does she mean she's angry? How dare she say that!"
"Wow, that's terrible." Kara sounds sympathetic, but she doesn't have much to add beyond that.
Nam offers me advice based on his relationship with his abusive father. "You just have to cut her off and tell her you won't talk to her until she can be civil to you."
"I don't know. It's not like I can just give her the silent treatment. Besides, I'm trapped in this fucking hotel room with them."
"You can't allow assholes to keep abusing you," he states forcefully.
I reluctantly end the conversation that feels like the only tether to sanity. I click the phone off and just lie on the sofa, staring up at the ceiling. As horrible as I feel, Nam's advice doesn't seem right. It's like the nuclear option. Things are not that bad yet. Besides, I really want to yell at her some more.
Around dinner time, Dad comes back into the room and asks to talk to me. Mom hovers in the background with her mouth turned down, but they've clearly decided he will do all the talking.
"We're just concerned about you," he says as Mom scowls angrily at me.
I don't reply.
"It's could date anyone...why...."
"Oh my god!" I explode, sitting up. "You think I'm settling for a disabled guy because I think I couldn't get anyone else? Do you even realize how insulting that is?"
Now Dad doesn't reply.
"That's not it at all. You're so wrong," I continue. "I know I could date anyone. This is who I'm choosing because I want to. It's not a low self esteem thing, ok? Jeez."
I'm gearing up for a full-on disability rant, but instead Dad just says, "Are you happy?"
"Ok then," he says, smiling and looking meaningfully first at me then at my mother. "As long as you're happy, that's all that matters."
"Thank you. I'm sorry I yelled."
"Your mother's sorry too. Now let's go get some dinner."
Mom doesn't look sorry at all, but this is the end of the discussion. No one brings it up again for the entire week.
I get on the plane back to Raser City swearing, not for the first time, that I will never go home again. Fuck them and their stupid narrow-minded expectations.

As soon as I get back, Rollerboy comes to visit at my place. I make the mistake of telling Rollerboy about my mom's reaction to him.
At first he looks puzzled. "That's weird. Why would she be angry?"
"I don't know. She has some messed-up phobia about disabled people, I guess." I hadn't ever really thought about it until this very moment as I'm talking about it, but the details start to add up. It's not only the way she freaked out over K and Rollerboy. And not only the constant embarrassed admonitions to "Stop staring!" when I inevitably stared at someone with a disability. Maybe it's the fact that after her constant ranting about how the newly constructed neighborhood CVS has too many handicapped parking spots, my dad said, "Your mom hates disabled people."
But there's also the story she told me about how when she was a teenager, she spent one summer working as an aide in a hospital doing occupational therapy. On her first day, some crusty old dude who was a DAK amputee teased her by shouting, "Look what they did to me!" and pulling away the blanket to expose his stumps. Coming from someone else, this could have been a funny ha-ha story, but the way she told it, with the horror still in her eyes all these decades later, she had clearly been traumatized.
Then there was that time when I was in high school and she had a this client, a young man who was in a wheelchair. At the time I was mildly obsessed with meeting this guy. I combed through her files and hung around her office trying to run into him, but I never did. She clearly hated having to be around him. I remember her talking in horrified tones about his curved hands. From my snooping, I was able to piece together that he was a quad with a fairly recent SCI, probably less than 5 years. In retrospect, I feel so bad for him having to deal with her bullshit attitude on top of everything else.
I foolishly tell Rollerboy all of this, though, and as I'm talking, his face changes from bewilderment to rage.
"What a fucking bitch," he spits when I tell him about the quad client. "You have no idea what that guy was going through, and she just made it worse."
"Yeah, I know," I say uncomfortably, feeling suddenly defensive. Even though I agree with him, even though I'm still angry at her, I don't like him calling my mom a bitch. I love my mom. Despite her flaws, in the grand scheme of things, she has always been a pretty great mom.
"What if it happened to her," Rollerboy continues. "What if she was hit by a bus and became a quad too. It could happen so easily. How would she like it, being stuck in a fucking wheelchair all day and everyone acting all freaked out around her. She wouldn't be able to take it." He goes on and on like this, spinning out a petty revenge fantasy in sickening detail, just like he did about the guy who stole his identity online. I hate this vindictive, nasty side of him. I hate hearing him talk about my mother this way. I hate that he's forcing me to defend her when I'm still so angry at her.
Or try to defend her, anyway. "She's really not a bad person," I offer halfheartedly, not wanting to fight with him, but he steamrolls right over me.
"What a fucking bitch. She should be the one who's a quad." His rant is far from over.
Inwardly, I'm kicking myself for ever mentioning any of this. I'm so stupid for not realizing that he would take her reaction personally. Sometimes it feels like we're just playing at a serious relationship, like this is still just a casual hookup that has improbably stretched out to nearly a year. But of course he would be upset that his girlfriend's mother doesn't approve of the relationship, and what's more has an irrational prejudice against him.
So even though it pains me not to defend my mom, I don't try to change his mind about her. The only thing to do is let him ramble on until he's had enough, then try to change the subject and not bring it up again.
Later in the week, after Rollerboy has gone home, I rehash the whole thing again with Sarah, trying to make sense of it as we eat ice cream and watch tv late at night in her apartment. I tell her everything: the fight over Rollerboy, the stories that I never thought to put together until now.
"Wow," she says, raising her eyebrows. "'Your father and I are very angry about this.' That's quite a statement. I mean, she could have chosen any other way to react, but she went with 'angry.' There's definitely something going on there."
"You think?" I pick unhappily at the blue velveteen upholstery on her couch. "So do you think she, like, made me into a devotee?"
Sarah nods thoughtfully. "There does seem to be some negative feedback loop going on between you two."
I hate this idea. When I first found out about devotees, I spent some time trying to figure out where it came from. A theory popular on the terrible devotee websites I was reading at the time suggested that it was caused by some event in early childhood, like seeing a disabled person get positive attention. This seemed ridiculous to me. Wouldn't that make every person in the world a devotee then? Besides, my earliest memories of disabled people are all from books and movies, not real life, and I knew I had this attraction by the age of four. I hate this Freudian idea that our adult personalities are shaped by a single traumatic event in early childhood. There was no trauma in my childhood, and life is way more complicated than that. Eventually, I decided that trying to deduce the origins of devotee feelings is a fool's errand when we don't know how any human sexual desires are formed. Why are some people gay? People also used to think it was because of a trauma in early childhood, but that's clearly not true.
On the other hand, I remember hearing Dan Savage talk about how many fetishes and other sexual fixations are a way to work through fear and anxiety. We take the thing we fear the most and sexualize it. So what if when I was very little, my mother implanted a fear of disability in me, and instead of mirroring her fear, I inverted it and made it sexual instead? I suppose it's possible. But I still hate the idea that my mother could have caused it. I prefer to think if it as something that just happens, like a crossed wire or genetic blip. I don't blame her for me being like this. I just wish we didn't have to fight about it.

Wednesday, August 18, 2010

Devo Diary Chapter 22

Rollerboy Part 8

August 2001

"I went to a quad rugby practice with Rollerboy last weekend."
"Oh yeah? How was it?"
I'm sprawled on Sarah's blue velveteen couch, watching Buffy reruns. We're making the most of the few weeks of freedom left before the fall semester starts.
"All those guys in chairs, oh my god, it was like I'd died and gone to heaven," I joke.
Sarah laughs awkwardly. "No, really."
"It was cool to watch him play, and the other guys on the team seem like good guys, but they're not that skilled. Rollerboy complains that they always lose. Mostly he said playing just an excuse to ram his chair into people, to get his aggressions out."
"Really? They hit each other?"
"Yeah, they use special chairs that are built like tanks. It's fun to watch."
"It's good that he has a hobby."
"I don't know, he's not that into it. He always says it's pointless because he can't really compete and win at anything. He just doesn't have enough arm strength."
"Maybe he could do like wheelchair racing or something?"
"I don't know. I mean, a few weeks ago he let me borrow his extra chair and we were messing around in the parking lot of his apartment complex, racing, and I could beat him easily. Me! Look how weak I am." I pull up my sleeve to display my puny bicep. "His arms are partially paralyzed. No matter how much he trains, he'll never be that fast. I think he's just really frustrated."
We watch a few scenes in silence.
"Sounds like he's been frustrated a lot lately," Sarah offers nervously.
I immediately get defensive. "Well yeah, wouldn't you be? The doctor told him he's been losing weight, but it's not muscle or fat, it's, like, his bones."
"That poor guy," Sarah murmurs.
"Yeah, so, you know, it's hard." This isn't just an argument I'm having with a friend. I've had the same argument with Rollerboy, and with myself. It feels like he's short tempered all the time, and all he ever does is sit around and play Gran Turismo and watch NASCAR. I wish he had something in his life that made him happy, some reason to get up in the morning, something to get excited about.
"I know I can't make him happy," I say to Sarah for like the hundredth time. "You can't make someone else be happy. But I keep hoping I could, like, lead by example. He could see what it looks like to have a happy life with me, and maybe he would want to make those changes." I really, really want this to be true.
Sarah glances at me warily, not wanting to spark another argument. "He just seems like an angry person," she says carefully. "He's not the only guy in a wheelchair in Raser City. If you just look around more..."
"But I love him," I say, my voice sounding more whiny that I want it to.

The last weekend before classes start, I drive up to Bessemer to see Rollerboy. The weather is gorgeous, hot and sunny. We decide to go to the park for the afternoon, with me in his extra chair.
"You're probably, like, all turned on by this," he says, half joking and half sneering, as he pulls the extra chair out from the corner by the couch.
"No," I says seriously. Since this is the second time I'm using his chair (including that time we raced in the parking lot) I don't want him to get the wrong idea and think I'm a pretender or wannabe or something. I don't want to be disabled, and I don't want people to think I have a disability. This is just for fun. "This is your idea, remember? You said you wanted me to know what it's like to push."
"I'm just messing with you," he backpedals, smiling. He pops off the wheels and tops them up with an air compressor. It always makes me nervous to watch him to this, because the only way he can keep the pin in the hole is to hold the wheel across his lap and jam it against his belly, the flat of his hand pushing against the air hose. What if he overinflates the tire and it explodes?
"Relax, nothing's going to happen," he assures me. He pops the wheels back on and hands me an extra pair of gloves.
I sit down in the chair and he tries to show me how to pop a wheelie, but I can't do it. The front casters feel bolted to the floor.
"You gotta throw your weight backward a little," he explains, but I can't bring myself to do it.
"I feel like I'm gonna flip over backwards."
"That's why we're practicing on the carpet. Come on, back and up."
Very gingerly, I shift my center of gravity back, while pushing back on the rims with a small tug. The casters lift up a fraction of an inch.
"See, you got it! Come on, let's go."
At the park, I unload the extra chair from the trunk of the car while Rollerboy pulls his from the back seat. I feel silly setting it up while standing, then sitting down in the chair, but there's no one around to see.
Inside the park, on the walkway it's another story. There are tons of people out, and they all stare sappily at us, the crippled couple. A few people even go out of their way to come over to us and say how great we look together.
"Keep going, you can do it!" gushes an older dude on a bike as he rides by.
We laugh at all these dopes behind their backs.
Then we come to a pedestrian bridge over a small creek, and suddenly my casters get stuck in a metal rut, the join where the asphalt path and the bridge come together. Rollerboy pops a wheelie and glides over it easily, then turns to laugh at me as I struggle to lift my casters.
"Come on, back and up," he says, but I can't do it. As I'm rocking back and forth, trying to get unstuck, a small crowd forms.
"Do you need help?" asks a fortyish woman in jogging clothes. I stare up at her, not knowing what to say. I was just about to stand up and walk the chair over the bridge, but now with all these people watching, I somehow feel like I shouldn't.
"Don't help her. She needs to learn how to do it herself," Rollerboy instructs, but when I glance over, I can see he's about to burst out laughing.
"I'm ok," I insist, staring at my shoes and trying to will the footplate to rise up, just one inch.
But before I know what's happening, some dudes lift me up over the rut and deposit me on the other side.
"Um thanks, I got it from here!" I wave at them. The crowd beams happily at us before dispersing. Everyone is clearly congratulating themselves on doing their good deed for the day.
By this point, Rollerboy is dying laughing. "Oh my god, I can't believe you got stuck in that tiny rut! That's like, not even half an inch! And those idiots helping you! I'm like, no she has to learn to do it herself." He affects a patronizing tone that I can only imagine he has heard a thousand times.
I feel a little bad for fooling those people into thinking that I'm disabled. That was never my intention. But it all happened so quickly, before I had a chance to say, no it's ok, I can walk. And I have to agree with Rollerboy, it is pretty hilarious that I got stuck so pathetically, and had to be rescued by clueless do-gooders.
After that incident, though, I manage not to embarrass myself further. It's a beautiful sunny day, and rolling around the park together is fun. For the most part, the walkways are smooth, flat asphalt, really easy to roll on. It's kind of cool to both be on the same level for once. And it's so nice to be doing something low key and relaxing together, outside in the fresh air, rather than going to a mall or spending the whole day watching tv.
We spend a few hours at the park, but eventually Rollerboy starts to get tired and hot. He sprays himself with water to avoid overheating, because he can't sweat below the line of his injury.
"When I was first injured, the doctor told me to stay out of the sun because I would just cook," he says. "Those were his exact words: 'you'll cook like a steak in the sun.'"
By this point, we're both feeling a bit warm, so we head back to his car, where he cranks up the air conditioning as far as it will go. He doesn't say much on the ride home, but I don't think much of it. He often falls silent for long stretches, especially in the car. I quell my urge to fill up the space with constant chatter, to ask how he's feeling or what he's thinking. It's a bad girly habit to pester a guy like that to try to feel close, but I'm trying to break it. Instead I zone out, looking out the window and feeling happy that we had this fun experience together.
He pulls into his parking spot at the apartment complex, and I hop out and unload the extra wheelchair from the trunk, expecting him to pull his own chair out of the back seat like he always does. It takes me a minute or two behind the car to pop the wheels back on the extra chair, because I'm not very good at lining up rod in the hole. But when I come back around the car on the driver's side, pushing the extra chair in front of me, he still hasn't gotten out of the car yet.
"I have a headache," he says gruffly, leaning back in the seat. He's left the engine running and the air con still on, even though he's got his door open. "Can you get my chair out?"
"Sure." It's scorching in the parking lot, with no shade and the sun beating right down on us. I guess he's still feeling hot. I fumble around with his chair, struggling to get the wheels on while he grumbles at me to hurry up. I also grab his backpack out of the back seat.
"Do you want me to open the door?" I figure it will hurry things along if I go ahead while he's transferring. He grunts yes, so I take his key out of the backpack and sprint down the walkway to his door.
The single key is screwed into a big metal loop, to make it easier for him to get it in the keyhole and turn it just using the flat of his hands. I've seen him do it dozens of times, and he makes it look easy, but the lock on his door is kind of messed up and if you don't get the key in exactly right, it won't turn. I try it, but nothing happens. I pull the key out and stick it in again, but still nothing. I try a bunch more, but the lock is completely frozen; it feels like I have the wrong key.
Finally I give up in frustration and run back to the car, where Rollerboy is still sitting in the driver's seat.
"I can't get the key to turn," I admit apologetically.
"What the FUCK!" he shouts. "Jesus Christ! What is wrong with you? Just open the fucking door!"
"I can't get it! I'm sorry! Are you ok? What's wrong?"
"I'm having dysreflexia! Just open the fucking door!" He stretches his arm above his head, maybe trying to bring his blood pressure down. His arm and hand spasm, his fingers flapping robotically as I watch helplessly. Giant drops of sweat are standing out on his forehead.
"I'm sorry! I just think it will be faster if you unlock it yourself. Do you want me to help you transfer?"
"No I don't want you to fucking help me transfer." But I help anyway, holding the chair as close as possible to the seat of the car. He slowly edges to the side of the seat then hoists his butt in the air. For a second he hangs there, shaking slightly, then falls into the wheelchair seat.
I follow him to the apartment door and hand him the key. He gives me a dirty look then jams it in the lock and turns it with the side of his hand, using the metal holder as a lever, cursing at me the whole time.
"I don't see what's so fucking hard about it," he mutters as he bumps over the threshold.
He cranks up the air conditioning then throws himself onto the sofa and strips off his shoes and shirt, while I bring him a glass of water and the spray bottle. He switches on the TV and we sit there silently until the spasms stop and presumably his headache clears and spiking blood pressure goes down.
I feel terrible. He needed me to do a simple task and I couldn't do it. Why does this keep happening? I feel like I'm always running around frantically, trying to salvage some near disaster. This never happened with K. It was like I spent my whole life before I met him practicing for a blind boyfriend, and I knew exactly what to do, how to help him without making him feel bad about it. A mutual friend once told me that he seemed less disabled when he was around me.
But I'm still so clueless about Rollerboy. I feel like I'm always doing the wrong thing and pissing him off.

The next weekend I'm up at Rollerboy's place again, and the weather is still sunny and hot. His dad and step mom are out of town for the weekend, and they offered to let him come over and use their pool while they're gone.
I'm not sure what I was expecting, but his dad's house is really nice--big and new and in a nice part of town. The pool is even a real in-ground type. Whenever Rollerboy talked about his childhood, he made it sound like he was poor, but I guess his dad is better off since then. Also his parents got divorced when he was like 14 and he lived with his mom, while his dad married a woman who had three kids.
It feels weird to be in their house when they're not at home. If I was a normal person it might also feel weird that Rollerboy and I have been dating for almost a year and I have not yet met any of his family, neither his dad nor his mom, who is officially listed on his SSI forms as a live-in PCA but never seems to be around. I mean, I assume they know he's seeing someone, hence the invitation to use the pool, but he has never indicated that they want to meet me, or that he wants me to meet them. Which actually is fine with me, because I have no intention of having him meet my parents either, not after the way my mom freaked out when I told her about him.
The house is not fully accessible. There's only one step to get in so that's no big deal, but he can't get up to the second floor. There are tons of photos on the wall above the staircase and in the upstairs hall, the kind of posed portraits you get from school and at the mall. I creep upstairs to look at them, trying and failing to guess who everyone is. There are a lot of different people, so clearly the display includes some extended family. I try to pick out a photo of young Rollerboy, or spot any family resemblance with his dad, but can't be sure about anything, and I can't ask him because he can't get up the stairs. It seems so strange that he's never been upstairs in this house.
I abandon my moderate attempts at snooping and we head out back to the pool. It's another brilliantly clear day, not a cloud in the sky and the air hot and dry. The water looks perfect, warm and inviting. But there's no hoist or ramp or even stairs, just a flimsy looking ladder on one side.
I pull off my shorts and t shirt, revealing the bathing suit underneath, and pile up some towels on a chair, while Rollerboy clamps off his leg bag and parks his chair right at the edge of the pool.
"Um, have you done this before? Will you be ok getting in and out?" I ask nervously, flashing back to the near disasters in the bathtub, not once, but two times.
But Rollerboy seems unconcerned. "It'll be fine," he insists impatiently, directing me to lay a folded towel at the edge of the pool.
I get in first, then slowly, he transfers out of his chair onto the towel, then swings his legs into the water. As I stand in the water in front of him, he leans his torso against me, our arms around each other, as he slips into the pool.
I have a poster on my wall at home of a painting by Howard Pyle called The Mermaid. It's an embrace between a mermaid, half rising out of the water, and a sailor, draped heavily over her as he stands on the rocks, his leg at an unnatural angle. I feel exactly like the mermaid in that picture. Holding him in the pool is unbelievably sexy, for once effortlessly eye to eye. Not like when I stand him up from the couch, where he sags heavily against me. The water makes our embrace weightless, smooth and slippery. We laugh and kiss and bounce around, enjoying the new sensation. The sun glitters on the surface of the water, throwing off blinding shards of light.
"Do you think you could swim?" I ask.
"I don't know, I never tried. Maybe. Yeah, I guess so."
"Want to try?"
"Sure, why not."
"Ok, so I'm going to let go of you, ok? You're sure it's ok?" We're still right at the edge of the pool in the shallow end. He nods and I let go, stepping back one pace and watching.
Rollerboy flaps wildly with his arms, sinking immediately lower in the water, then rising slightly, his head sort of bobbing up and down. He seems ok even though he's working really hard, so I let him go for a minute or so before grabbing him again around the waist.
"What the hell!" he gasps. "I was drowning!"
"What? You were swimming."
"No, I was fucking drowning." But he seems only mildly annoyed. He can't have been that traumatized because five minutes later he asks to do it again, and this time he manages to balance a bit better, doing a kind of frantic dog paddle that at least keeps his head out of the water. I watch him more closely, feeling terrible that I didn't realize he was having trouble before. What is wrong with me? I grab him again, just to make sure I'm not misreading the situation.
"Hey, I was swimming!"
"Really? It was ok that time?"
"Yeah, but it's too much effort. Not worth it."
We spend the rest of the time floating instead, clinging to the edge of the pool.
Getting out is much easier than I had feared. I stand in front of him and help keep him from pitching forward as he hauls himself back up onto the towel. The pool seems to provide a lot more buoyancy than a bathtub, because he pops right up out of the water without too much difficulty. I drag over a plastic chair and he transfers into it to dry off and change out of his bathing suit, so he won't make his wheelchair seat wet.
The whole thing is so easy and fun, I wish we could do it every weekend, but of course it's not every weekend his dad is out of town.

The weekend after classes start, Rollerboy comes to visit me. We are both so sick of my miserable little apartment--the terrifying chore of pushing him up and down the insanely steep driveway, the fact that he can't use the bathroom. Not to mention the constant noise from the busy street, and the way I have to drive through downtown traffic whenever I want to go anywhere. There have been problems with the heating system as well that the landlord can't seem to fix. I really don't want to spend another fall and winter here. Even though I have another year on my lease, I'm so ready to move out.
Which brings up another issue. I mean, we've been together for almost a year. I've never lived with a boyfriend before, but isn't that what people do when they've been together this long?
As we're lounging on the sofa in my apartment, I list all the things I hate about this apartment. Actually we're just killing time until it's time to go out to dinner, because there's nothing in Raser City that Rollerboy wants to do and he hates pushing over the broken and hilly sidewalks.
"We should move in together," I suggest.
"That would be a terrible idea," Rollerboy replies in a rare moment of calm clarity.
We've been over this before, so I don't even bother rehashing the argument, because I know he's right. Neither of us can leave where we are right now, and in between Raser City and Bessemer is a vast wasteland of strip malls and farmland. There's no point in moving to some shitty little town in the middle of nowhere, where we will each have a two hour daily commute. But even though I despise the idea of leaving Raser City, I can't stop thinking about moving in with him.
"What about Cowtown?" I suggest.
"Ugh, no way. Cowtown? You've got to be kidding." It's one of the shittier towns on the way to Bessemer, but it is at least slightly closer to me. "Anyway, it doesn't matter because it would never work."
"But I at least want to tryyyyyy," I whine.

Ok, I can accept that we are not moving in together, but because I am truly sick of the craphole I currently live in, I start looking for a new apartment on my own. Not a place where we will live together, but someplace that will make the weekend visits more bearable. Someplace that is actually wheelchair accessible and that will make the commute to Bessemer easier.
Finding a wheelchair accessible apartment that is not too far from the university and that fits my grad student budget is surprisingly difficult. There are no high rises or sprawling condo complexes in this part of Raser City, just a ton of old houses converted to student apartments not even remotely up to code.
I look at one place that's the back half of a cute house that has been divided up into separate units. The main door of the back unit opens into the spacious back yard. There's only one step up, but the doorway seems suspiciously narrow. I like the apartment but I'm worried about that door. I stand in the middle of the doorway with my arms pressed up against the sides, trying to mentally judge the width.
"Something wrong?" the landlord asks.
"Uh, this door seems narrower than normal."
Instantly he's on the defensive. "The door is fine. See, it has a deadbolt. It's a normal door."
"Yeah, but it seems narrow."
"Why does that matter?" I can guess it really isn't up to code, because he definitely does not want to talk about this.
"Well, my boyfriend uses a wheelchair, and I'm worried he couldn't get in."
The landlord's whole demeanor softens. "Oh, yeah, well, that might be a problem. It is a little narrower than a standard door." By a little, he means a lot. It's crazy how he's relieved that I'm only turning down the apartment because it's not wheelchair accessible. I'm sad to turn down that place because it was otherwise really nice, but I'm determined to find something better.