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.


  1. Wow! Terrific episode! I really enjoyed getting the mixed perspectives of all sides -- friends, family, and Rollerboy, too. Well done.

    1. Thank you Pepper! I'm so glad you enjoyed it.

  2. So interesting to hear all the details from all sides. Wow,roller boy does go off. Lol

    1. Thank you! This was a really unpleasant chapter to write but I'm glad something good could come if these experiences eventually.