Tammy says it’s because they don’t dance like Elwood Blues or have autism the same as he does. Except our autism isn’t the same, but Tammy doesn’t understand. She means well, but autism isn’t one size fits all. Stuart and I are living proof.
Beside Stuart was David in his wheelchair, and beside David was Jeremey. I signed my special hello to Jeremey, and then I flapped at the room so they knew I was happy to see them too.
Sally waved me over. “We’re making plans for a party, Emmet. A New Year’s Eve party. Come join us.”
I ignored her for a minute because every time I see Jeremey after work I give him a touch. Jeremey loves touches and hugs about as much as they make me feel as if someone put my skin on inside out. Sometimes I hug him after work and sometimes I don’t, but he always gets some physical contact from me.
I put a hand on his shoulder, and his body went soft as he leaned his cheek on my hand.
Though physical contact isn’t my favorite thing as a general rule, when I touch Jeremey it’s a different story. Today as it usually happened, when I rested my hand on his shoulder, I wanted to sign for him to go upstairs with me and have sex. But it would be rude to leave the party-planning meeting when I’d just arrived, plus I had the chat with Darren to do. So I found a straight-backed chair I could put near David and Jeremey.
David had waited to greet me because he knew Jeremey came first, but when I sat, he held out his fist for me to bump. Our fist bumps are awkward since I clunk too hard and he can’t close his fist all the way or aim well to meet mine, but it’s okay.
Tammy had a list in front of her with two columns, one labeled activities and another snack food. Karaoke and dancing were under the activities column. They were not my favorites. But Mexican train dominoes was on the list too, and I enjoyed this game a lot. I don’t know what is Mexican about it, and I’ve asked, but Sally says it’s only a name. I haven’t been able to find any research that explains why it’s called that either, but I enjoy the game a great deal.
I studied the snacks side of the list and flapped excitedly when I saw what she’d written. Parmesan popcorn was a treat Tammy made when she was extra happy or wanted to reward a resident. It was on the list twice, once with plain written beside it and the other saying there would be M&M’s in the popcorn. This is because some residents enjoy the sweet and salty mixed together in the same bowl and some of us would need to go to the corner and hum if food were jumbled like that.
I didn’t say much while the others planned. Too many people were talking at once, and work and thinking about how to propose to Jeremey had drained my energy, so when I had an idea, I sent texts to Jeremey, who read them to the group. But then I had a thought so big I wanted to say it myself. I tapped the table, and when Sally called on me, I said, “Can we invite Darren?”
“That sounds like a great idea. I’ll talk to his staff and see about arranging for him to come over.”
I was annoyed because I wanted to invite Darren myself, not have staff do it. I thought if I hurried to the apartment, I could maybe invite him first, but before I could excuse myself, Jeremey tapped my leg twice to get my attention. When I turned to him, he didn’t speak, he signed.
A teacher of mine a long time ago taught me and my family to use American Sign Language to communicate during a period when speaking out loud felt too intense for me. I speak out loud often now, but I still use ASL sometimes because it’s handy. My family, friends, and boyfriend use it too, especially when we wanted to have conversations without other people getting involved. When I saw what Jeremey had to say to me, I understood why he was signing instead of speaking.
I caught Sally and Tammy whispering about budgets in the staffroom when they didn’t think I was close enough to hear.
Jeremey was worried about The Roosevelt closing again. Though if Sally and Tammy were whispering about it, maybe he was right to worry. I signed back to him. We need to talk to David instead of eavesdropping.
Jeremey nodded. I thought I would go see him now before we went upstairs to make dinner. But it might mean we start making dinner and do our laundry late.
This worked out perfectly. I need to talk to Darren about something anyway. We can adjust our schedule by a half an hour or even forty-five minutes without a problem.
Jeremey smiled at me, and my chest felt warm and tight. I love you, Emmet.
I love you too, Jeremey.
I kissed the inside of my palm, then pressed that palm to Jeremey’s. His eyes were bright as he took the kiss tight in his fist and his open palm to his lips.
I couldn’t stop smiling. I loved him so much.
“I’ll see you at dinner,” I said, then stood to go get some advice on what would be the best way to marry him.
CHAPTER TWO
Jeremey
Emmet is the man I love, the only person I could ever imagine being with for the rest of my life. David Loris, however, is my best friend.
David and Emmet and I are all three best friends, really. People call us the Blues Brothers around town as a kind of local in-joke after our viral video, even though it bothered Emmet for a while as there were only two Blues Brothers in the movie and the Saturday Night Live skits. Honestly, I can’t tell either of them this, but if it were up to me, I’d say the two of them could be John Belushi and Dan Aykroyd—David as Belushi and Emmet as Aykroyd—and I would be the guy with the camera or something. They’re so funny and sharp and determined all the time, the ones who make all the plans. I…don’t. David would say I was the quiet one, the stealth Blues Brother you had to watch out for, or something clever.
David is a C4 incomplete quadriplegic. This means his spine is damaged at the C4 vertebrae, but it’s not completely severed, which is important to understanding how his paralysis works. If he’d had a complete injury, he’d have no feeling whatsoever from those nerves on down, and there’d be no hope of repairing them with current medical technology. With an incomplete injury, however, how each patient experiences paralysis varies widely, and so does their recovery. David can use his left arm somewhat, but not his right, and he can feel parts of his legs on both sides, though he can’t move either of them. I’ve seen him flick a toe on occasion, but he says he’s not doing it. The movement is a nerve response. His nerves do odd things, jerking and twitching without him having any control over them, and he needs to be shifted in his chair manually because without those nerve pathways, his brain can’t send the little signals to twitch and fidget and keep from getting sore that able-bodied people do literally without thinking about it.
Some of this kind of caretaking is my job. I wanted to go to school to be a certified nurse’s aide so I could help David more, but school was too much for me and my anxiety, and I had to step out. David said it was no big deal, but I still feel like I failed him. I help him with daily tasks, though a lot of what I do is keep him company. He says that’s worth more than I give myself credit for.
He must have thought I was having one of my low self-esteem moments as I escorted him back to his room, because when he saw my troubled expression, he gave me a very David grin and bumped my leg with his elbow when I reached for the handle to his door. “Hey. Don’t hang around me when you’ve got your man waiting for you upstairs. I can handle opening my own doors.”
“Actually, I wanted to talk to you about something. Can I come in for a minute?”
“Sure.” He looked surprised and slightly nervous, turning his chair to face me as we entered the room. “What’s up, J? Did I say something stupid to Train Man again? Do I need to go apologize?”
Train Man was David’s nickname for Emmet. “No—you didn’t do anything. I wanted ask about The Roosevelt.” I bit my lip, feeling guilty, though I wasn’t sure why. “Is it…is it in trouble? Money trouble?”
I had my answer in the way he tried to guard his expression. Eventually he gave up and sighed. “I’m not supposed to say anything, so don’t tell anyone. But…yeah.”
I have to tell Emmet, I wanted to po
int out, but I had a feeling David knew that was implied. My stomach twisted, and my throat felt thick and tight. “Is it…is it going to close?”
David shook his head, a rough, clumsy gesture because he was tired and his muscles were getting weak. “He won’t let it close. But he has to find new funding. We’re privately run, but everyone here gets money from state and federal programs, so in the end it’s as if we’re state-run anyway. Plus we got started the first few years on grants, and those have run out. And all these hospitals closing have fucked our shit.”
I’d heard about the closings from Marietta, Emmet’s mother. “The mental health facilities that closed, you mean? The hospitals and large-care institutions closing in favor of group homes?”
“Yeah, that bullshit. The state closed all of them. Like, all of them. There are floors of some hospitals, but that’s it. Then there are group homes, and us. So you’d think, good business for The Roosevelt, right? Nope. They changed the way the law read, and you have to be a certain type of group home with a certain type of certification with a certain type of government contract. Dad about blew a gasket. What this boils down to is mental health services being sold off to corporations who don’t give a shit about mental health, just business.”
Now I understood why Marietta was so angry. “How can they do this?”
“The governor is a dick, is how, and in the last election people listened to a bunch of religious loonies and bigots, and now we have a conservative majority who—surprise—have no interest in anything but promoting corporate agendas. And since my dad isn’t one of the corporate assholes in on the gravy train, we’re screwed. We have no grants, none of these backroom-deal contracts, and fewer residents. There’s no waitlist right now, and someone is moving out the first of the year. Which I didn’t tell you about, but, so you know, it’s happening.”
The knot in my stomach tightened. “But you’re sure The Roosevelt won’t close?”
“I’m pretty sure my dad will move my family in here before he’d let things come to that, but yeah, money is tight. And getting tighter. What he’s trying to do right now, as far as I know, is find better funding options. More workarounds on these stupid restrictions and asshole laws the governor wrote for his dickhead buddies who own managed care companies. He wants to lobby local lawmakers, that kind of thing. But it’s getting hard for him to run his day job and keep The Roosevelt solvent too.”
“Is there anything we can do? You and me, or any of us at The Roosevelt?”
David shrugged. “I don’t know. I doubt it. I mean, I’ve thought about asking if I could go with Dad more to his fundraisers, but I hate being the crip on display, you know?”
“Yeah.” I’d gone with David to a few of those fundraisers, and they were indeed pretty uncomfortable. David usually ended up on stage beside his dad, pasting on a smile while Bob got teary and talked about David’s rehabilitation. Sometimes David told his own story, but it felt like a performance. As if everyone was there to watch a movie, to feel moved by David’s trials and tribulations, make a donation, then go home. Meanwhile, this was David’s life.
David grimaced. “I hate doing that shit, but if it’s schmooze or close The Roosevelt, I’ll do it.”
I wasn’t going to let him make the sacrifice alone. “I’ll do it with you.”
But my voice trembled as I said it, and David gave me a knowing look. “You’re doing no such thing. You want to go barf up your sob story in front of strangers on a stage so they can masturbate to your pain, but you haven’t told your boyfriend how bad your situation is yet?”
My cheeks got hot, and I averted my gaze. “How…how did you know I haven’t told him?”
“Because he hasn’t turned into a tornado of activity trying to help you.” David leaned over as far as he dared in his chair and bumped me with his hand. “You’ve got to tell him. I know he’s gonna freak out, but you’ve got to tell him how much worse your depression is. Pretty soon he’s going to notice on his own, and then he’s going to be worried and hurt both. He’s already going to be upset he’s the last to know.”
I knew all of this and, ironically, it was making my depression worse. I wrapped my arms tight around myself and rocked, aware this was a habit I’d picked up from Emmet, the rocking as self-soothing. I wished I had told him a long time ago. I bit my lip and let a tear slide down my cheek. “Do you…think it’s too late?”
“What, do I think he’s going to break up with you over this? No. That’s your depression talking. He might be mad, yes, but I think annoyed is more likely. Tell him why you held back. Then don’t hold back anymore. And a bit of advice, bro: go tell him now. Get out of here and go do it. I need to take a nap anyway.”
I wiped my eyes and stood, then went to David and hugged him. “Thank you.”
He hugged me too, a quick but firm one-armed pat on my shoulder. “You’re welcome. Now go. Don’t worry about The Roosevelt, and don’t worry about Emmet. Everything’s going to be fine.”
I did leave, but I worried too. About Emmet’s reaction, and about the future of The Roosevelt.
I had a feeling I was going to worry about the future of The Roosevelt a lot.
CHAPTER THREE
Emmet
While Jeremey went to talk to David, I went to our room and invited my friend Darren to a Google Hangout.
Darren lives at Icarus House, a group home near the hospital. He’s Jeremey’s friend too because they’d been roommates while we waited for The Roosevelt to open. Darren is autistic, but his autism isn’t the same as mine. He has other disabilities too, like our autistic hero Carly Fleischmann, that won’t let him talk at all with his voice. He can whisper sometimes to videos, or make barking noises, or sometimes yell like he’s a foghorn, but he says those noises bother him too. So usually he uses his computer to talk for him, or he signs.
Darren is a funny guy. He makes the best jokes. Also he is a panromantic asexual. He says most people don’t know what it means. I do because I asked him, though I also Googled it. He says he’s interested in romantic relationships, with any gender identity or orientation, for companionship, affection, and intimacy. However, he is not interested in sex and feels no sexual attraction whatsoever. He also does not care for most touch at all, especially not sexual touch, but he says he’s curious about kisses from a philosophical and experimental standpoint.
I’m particular about who touches me and how, but I am definitely not asexual. I enjoy sex a great deal. Also, I am strictly gay.
Talking with Darren about asexuality is interesting. I hadn’t heard about it until he told me he was asexual, but now I’ve done a lot of research and I feel more secure in my knowledge. I’m disappointed in how little information there is on non-binary and gray sexuality. Darren says this is because the world has a decided sexual bias. When he told me this, I pointed out the world probably has a sexual bias because of a biological imperative to procreate, and then we had a long debate about whether or not procreation was a necessary modern bias.
Darren is quite intelligent, but most people don’t know this about him. Most people think he’s the R-word and S-word autistic guy who hums and rocks on the couch while he whispers to his YouTube videos on his iPad. Except they don’t say R-word and S-word. They say retarded and stupid. And dumb and moron and all the words I would never use about Darren or myself or any of my friends, anyone at The Roosevelt, anyone with a disability. Darren isn’t any of those words. In fact, Darren is smarter than most of the people who call him names. He programmed his iPad to talk for him by writing his own app because the systems available for his family to order were too expensive. When we lived in the same town, we had a teacher who taught us American Sign Language to use for communication on days when speaking out loud felt like too much effort, but ASL was too tricky for Darren with his hands sometimes, so he modified ASL to be DSL, or Darren Sign Language. I learned it too, and the two of us can speak to each other in a code only he, a few teachers from junior high and high school, an
d his parents know. He took both the ACT and the SAT in high school, and while we both got perfect ACT scores, he got a 1550 on his SAT, and I only got a 1500.
Except he needed to take the test over several days, and it was only a practice test at home. He couldn’t do the test in the testing center. It was hard for me to take it regularly with the other people, and I think it’s why my score was a little low. I was lucky on my ACT because the testing center where I took it was empty that day and set up in an ideal way for me. Darren is more sensitive than I am, though. He needs to take tests in perfectly quiet rooms with headphones on or something to decrease the stimuli, and he needs breaks. But according to people on the mean, this is cheating.
Even if Darren could have taken the tests in the center, it would have been difficult for him to go to college. His family doesn’t have any money. They did for a while, but then his dad lost his job at Amana Manufacturing when it got bought by Maytag, and his mom got sick. She’s better now, but between Darren’s health issues and hers, and his dad’s unemployment due to severe depression, they don’t have any money.
I knew Darren when we were in junior high, when we both lived in Iowa City, before my family moved to Rochester, Minnesota. Darren’s family still lives in Iowa City, but Darren came to Icarus House a few months before I met Jeremey. The group home he’d been living in closed, and when he heard Dr. North—my therapist and Jeremey’s too—had relocated to Ames, Darren asked to be transferred to a facility here instead. He and I rediscovered each other when Darren and Jeremey became roommates for a brief time after Jeremey left the hospital, after Jeremey’s suicide attempt but before we moved into The Roosevelt.
Shelter the Sea Page 2
