Thursday, October 1, 2015

VIGNETTE: Two of a Kind

I remember those days well. The ones just after I was injured, when it was all so new and traumatic. I remember each time a doctor or a nurse or my parents delivered another piece of bad news, which seemed to be the only kind I ever got around that time. That I was going to be paralyzed from my shoulders down for the rest of my life. That I’d never be able to live independently. That I’d be incontinent. That I might never have kids (though, at fourteen, that wasn’t exactly my biggest concern).

And it sucked for about three months. But I can honestly say that, by the time I came home, I’d reached acceptance (which is more than I can say for several of the whiny paras I’d met in rehab). Maybe it was because I had a supportive family and good friends and excellent healthcare. But I think it also had something to do with me. That I decided to be happy. And that’s something I’m proud of. It’s also how I ended up talking to Chelsea.

When I saw her first post on Apparelyzed, I thought, “This girl needs some guidance. And I’m just the one to give it.” It wasn’t the first time I’d appointed myself some kind of SCI ambassador, but it was the first time that what ended up happening happened…

At first it was just advice on catheters. She was newly injured—a college cheerleader who’d landed on her noggin during a particularly dangerous stunt at an NCAA championship game. Naturally, she was having some trouble adjusting. She irrationally wanted to keep her indwelling catheter, and the recurrent UTIs it brought, because she didn’t want a suprapubic. She said she didn’t want to pee out of a tube. Which was just stupid, obviously. She’d be peeing out a tube the rest of her life, just like I’d been doing for the last ten years. Did it really matter if it came out of her abdomen instead of her urethra?

Not that I didn’t have compassion for her; her injury was even higher than mine. At C2, she’d need to be mechanically ventilated full-time. I knew at least part of her hesitation was just not wanting another tube in her body. As high-level quads, so much is out of our control. Almost everything, really. I understood wanting to hold onto something. Even so, I eventually convinced her to get the suprapubic, and she ended up thanking me for it by sending me an iTunes gift card. And that’s when it got weird and maybe a little bit beautiful.

First things first: I know what you’re thinking. “Aw, idn’t that cute? The widdle disabled kids are in wove!” No. That’s offensive and annoying and I’ve been getting it since I got hurt. I’ll be out at a mall with my brother, and some family'll roll in with a girl my age with Down syndrome or something. And suddenly, I’ll feel all the eyes in the vicinity on us. All expectant, like that crab from the mermaid movie's going to start encouraging me to “kiss da girl” or something. I hope it doesn’t sound snobby, but, basically, I wasn’t into disabled girls before I got injured, so why would I be into them after? Besides I didn’t really know any, before. It's not like we have a directory.

The only thing is, dating able-bodied girls was pretty much impossible. I tried, believe me. But it’s hard to take a girl on a date when you’re not able to drive a car. Or feed yourself. Or lean in for a kiss, if that was ever even on the table. So I became the mascot of my small group of friends. Just a funny, firmly friend-zoned dude who was always game to hang out, as long as there was someone around to empty my piss bag.

But it was different with Chels. Maybe because we communicated strictly through text for months before I ever saw a picture of her. I got to know how funny and cool and smart she was before I saw a picture of her. So when I did see a picture, I mostly saw her pretty brown eyes and adorably freckly nose, instead of the vent tube coming out of her neck, or the strap that wrapped around her headrest to hold her head up. Again, I hope that doesn’t sound snobby. It’s not like I think I’m some prize. I haven’t moved my own body for a decade, and it shows. I wear a diaper. My mom bathes me and dresses me every morning and will for the foreseeable future. But I’m still a man. So I was pleasantly surprised by my reaction to Chelsea. And when we Skyped for the first time (through the computer I taught her how to set up and use), it was even more obvious that we just clicked.

That was two years ago.

And now, here we are. In a hotel room in Chicago, the rough midpoint between our parents’ homes in Ann Arbor (me) and Cedar Rapids (her). Lying side-by-side in bed together. She laughs self-consciously at the hiss and wheeze of her ventilator, loud in the quiet room, as her attendant (a big, black woman improbably named Olga) busily lubricates her, uh, down there. I can't see what she's doing, but I can see the tube in Olga’s hand, and know it’s the same thing both of us use for our bowel programs: lidocaine. Neither Chelsea nor I have any sensation below our injury levels, and we’re both susceptible to autonomic dysreflexia. So the numbing gel won’t dampen our fun (oh, god, I hope this is fun), and will hopefully prevent either of us from stroking out.

“Ready to turn over?” Sylvie, my caregiver, asks.

Yes, there are four of us in the room. Chelsea and I are both totally dependent, which includes in the bedroom. We’re both used to other people taking care of our bodies for us. “Chels?” I say, turning my head to look at her. Because Chelsea can’t turn her head on her own, or nod, she just whispers in her breathy voice to the ceiling, “Now or never.” With that, Sylvie hefts me onto my left side, and Olga moves Chelsea onto her right, careful to keep her vent tubes unkinked.

And suddenly I’m face to face with my beautiful girl.

And Chelsea really is still beautiful. Way hotter than I’d have ever landed, even if we were both able-bodied. I glance down, now that we’re both naked, and I’m astonished at her body. It’s beautiful, too.

I know, I know. I said I wasn’t into it. But there’s a familiarity to her curled hands, her “quad belly,” her thin arms and legs. They say a majority of people marry someone who looks like them, and I get it now. Not only is there no shame between me and Chelsea, but there’s a feeling of coming home.

And that’s the feeling that’s going to stick with me, I know. Even after Olga holds Chelsea’s head so we can kiss softly, deeply for twenty minutes. Even after Olga and Sylvie position us, and let us know that we’re technically having sex (Chelsea's first time since her accident! My first time since ever!).  Even after I watch Olga dress Chelsea, manipulating Chelsea’s full breasts into her bra. Something I know I’ll never be able to do, but wish to god I could. Even after we share the most romantic meal of either of our lives, over McDonald’s down the street from the hotel, Olga feeding us both while Sylvie packs up our luggage.

Even after I’m home. And still missing the person I now think of as my real Home.

We both know we won’t have a normal relationship. We won’t marry and have babies. Or ever even live closer than a several-hour drive—we both require too much care to ever be away from family. But hey, as I'm teaching Chelsea, that’s life as a high-level quad.

And anyway, we'll always have Chicago.


  1. That was beautiful. Superbly written. Missed you around here. I'd love it if you would write more for us.

  2. I second what Pepper said. Beautiful.

  3. That was beautiful and very, very sad...

  4. Another wonderful story! Your writing is always excellent. And since I live just outside Ann Arbor I felt an extra connection to it ☺thank you for sharing!

  5. You write so well!! Would LOVE to read more. Thanks for this one!

  6. Really nice. A little sad. Well written. Always enjoy everything you write. Thanks

  7. Thanks! I really, really enjoyed this.

  8. I loved this story when I read it. I thought back to it when I saw this video:
    They have SMA, but are similarly dependent as the couple in this story.