Read Carry the Ocean: The Roosevelt, Book 1 Online
Authors: Heidi Cullinan
Tags: #new adult;autism;depression;anxiety;new adult;college;gay;lgbt;coming of age romance;quadriplegia;The Blues Brothers
“He can’t get a job and go to school,” Mrs. Samson said.
“I don’t want to go to school,” Jeremey said, and everyone started yelling.
This kept happening. Jeremey or Dr. North would explain something about what Jeremey was going to do, and his parents would get upset. I understood now why Jeremey was so nervous to tell them. Even with everyone in the room, they got angry. They make me very stressed.
I imagined Jeremey living with that stressed feeling all the time, and I thought maybe this was why he was so depressed and anxious. Though probably it’s more complicated than that.
“What I need you to understand,” Dr. North said finally when everyone had calmed down, “is decisions about his future are Jeremey’s to make, and his alone. I’m giving him my advice on what I think he should do, but he’s making his own judgment calls about his health.”
“So you expect us to pay for whatever he decides is all right?” Mr. Samson asked. His mustache kept twitching. “To pay to let him shack up with this kid he thinks he’s dating?”
“We’ve started disability paperwork for Jeremey, which will mean he’s eligible for SSI funding—”
“
Disability?
” Mrs. Samson’s face pinched, and Jeremey hunched forward more.
My mom had looked for a while as if she wanted to say something, and now she did. “Gabrielle, I understand about the labeling of your child feeling limiting. I understand more than you can possibly know. But denying it doesn’t change Jeremey’s situation and in fact hurts his chances of getting help and feeling normalized within society.”
Mr. and Mrs. Samson started yelling then, so much that I wanted to make the sign to my mom that I needed to leave. I thought about seeing if Jeremey wanted to leave too, but he couldn’t leave his own therapy session. The yelling made me feel anxious, probably Jeremey too, but I worried if I left, maybe Jeremey and I couldn’t live at The Roosevelt together.
Jeremey didn’t have a phone, but I did. I pulled it out of my pocket, opened Notes and typed, then passed the phone over.
The yelling is bad. I wish we could leave.
He read my note and typed one back.
Yes. I’m sorry. You can go if you want.
When he gave me my phone, I added an E before my text and a J before his, and when I replied, I added my initial so it was organized.
E: I don’t want to leave unless you leave too.
Jeremey let out a small sigh when he read my comment.
J: I don’t think I can. But isn’t the yelling bothering you? It’s hard to tell because you’re so calm. You’re not even humming or rocking.
I wasn’t, and it was stressful not to, with the yelling
and
having to sit still.
E: I’m trying to be good so your parents don’t call me the R word.
That was all I wrote, but Jeremey stared at my text for a long time, like I’d written a whole paragraph. He held my phone tight, not looking up. In the background our parents yelled at each other, and Dr. North used his quiet voice to get them to calm down.
Then Jeremey yelled, “
Stop.
”
I startled. His voice was loud and angry, and a hum escaped before I could stop it. I rocked a few times too, but I stopped when Jeremey put a hand on my shoulder. It was just the right touch. Okay because it was from him, heavy but not too hard, not so light it made my skin tingly.
“Sorry,” he said, his voice much more gentle. “I didn’t mean to scare you.”
I gave one tiny rock, but I didn’t shake off his hand. “There’s a lot of yelling.”
There wasn’t yelling now, though. Everyone was quiet, watching me. I wanted to hum, rock, flap. The more they stared, the more I wanted to relieve the stress, but the Samsons would think I was stupid. Retarded. My grades and scores wouldn’t matter when I was humming and rocking and flapping.
I needed to leave, but I felt I would wreck our chances if I did. Another hum escaped, and a rock.
Jeremey took my hand. He didn’t yell, but he spoke to his parents with a stern voice I hadn’t heard him use before.
“I’m tired of this. I don’t care anymore what you guys think. I’m living on my own. You can pack up my things. Or—get rid of them. I don’t care. It’s bad enough admitting I have mental illness so severe I have to go on disability. But this I don’t have to put up with, everyone yelling and making me and my boyfriend feel like shit.”
His hand tightened on mine. “He
is
my boyfriend. I don’t know why he wants to live with such a hot mess as me, but I’m glad he does, because he’s the only good thing in my life right now. The thought of being with him at The Roosevelt makes me work harder to get up in the morning. I don’t want to have to stay at the hospital until it opens. I wanted to go home and have a smooth, careful transition. I wanted to tell you about it, but I was so nervous I thought this might be better, having Emmet’s family here too, and Emmet. But you’re embarrassing me and upsetting Emmet, and me. So we’re done. We’re just done. I’ll stay at the hospital or under a bridge before I go home to you.”
The Samsons started yelling, and I couldn’t do it anymore. I let go of Jeremey’s hand and made the sign to my mom that I had to leave or I would melt down. Jeremey wanted to talk to me, wanted me to stay, but I couldn’t. I held back until I left the room, but then I hummed, rocked and flapped as I faced the wall. The halls were quiet, but everything felt loud and sharp in my head.
Mom talked me down. She didn’t touch me, but she stood beside me and spoke quietly, told me how my dad was getting the car and we’d go out a side door to the parking lot. Althea stood on the other side, not saying anything, like a guard. It felt good.
We left through the authorized-personnel-only door, which normally isn’t okay, but my mom is a doctor and doctors can do what they want in hospitals.
At home they wanted me to rest, but I wanted to code. I worked for a long time with my door closed, but eventually Mom knocked.
“I’m fine,” I said.
“I need to talk to you and make sure. Also, you need to eat and drink something. It’s been six hours.”
I glanced at my clock and saw this was true. But I still didn’t want to stop. “I’m almost finished. I’m making a design.”
“Okay. I’ll wait. But I’m coming in.”
I didn’t mind that she came into the room. Mom is good at being quiet. I finished the lines of computer code, then checked them. “I’m going to run it and see if it works or if I made a mistake.”
“Is it okay if I watch?”
“Yes.”
I ran the program. It wasn’t difficult, but it looked complicated because I’d written in a lot of patterns.
“That’s pretty. I like the changing colors. Does it do anything else?”
She was making a joke. My programs always do something else. “The patterns are numerical representations of a comment feed. I assigned people different colors and pattern variations, and how long their responses go determine the length of the pattern’s run. I was going to code for common words, but I decided I didn’t want to bother.”
“What was the comment feed?”
“A thread on Reddit.”
“Oh, honey. You know I hate it when you go there. And today of all days.”
I watched the pattern weave by, let the numbers calm me. I’d set it to go slow enough I could remember the code for each part, could remember how I’d written it. “It was an ugly conversation. I made it pretty.”
“What was the conversation about?”
I watched the code some more. “A post where a parent talked about curing his son’s autism.”
“
Emmet.
” She put a hand on my shoulder. “Please tell me you didn’t listen to any of it. We’ve discussed this. You’re not broken. You don’t need to be fixed.”
“I’m not the same as everyone else. As
anyone
else.” The code made swirls now, because it was the part of the thread where people had written lots of short things, and some of the comments had been deleted. I’d made the pattern movement change direction whenever a post was deleted. It changed direction a lot. “Mom, sometimes I think you’re wrong. There is so a normal. There’s a kind of person everyone else can be, and then there’s me.”
She crouched beside me and turned my chair so I faced her, held my face so I had to work to not look her in the eye. Her face was serious, her eyes wet. “Emmet David Washington, you’re beautiful, brilliant and perfect as you are. I don’t ever want you to be normal. I can’t think of anything sadder on this earth than losing you to the pool of lemmings.”
I understood she was making a metaphor, but I was distracted for a minute by the image of an empty swimming pool with lemmings running around the bottom. I couldn’t understand how in the world this would explain anything except that her imagination was really weird.
I shook my head to clear out the lemmings and pushed her hands away. “I don’t want to be special. I want to belong the way other people do.” The fear that had lurked in the back of my mind while I wrote code found its way out. “I messed up the meeting, and now I won’t be able to live with Jeremey. And I want to, Mom. More than anything.”
“You didn’t mess up anything. In fact, I think you gave Jeremey exactly what he needed: someone to protect. He was so nervous until he saw you needed rescuing, and that gave him his courage. You helped
him
belong. You were better medicine for him than anything Dr. North could prescribe.”
“Really?”
“Really.” She smiled, but she looked sad at the same time. “Your dad is right. This is important for Jeremey, and for you too. Just promise me you’ll be careful. That you’ll practice being a good boyfriend as much as you do learning emotions and conversation prompts.”
“I will.” This was good, but she hadn’t said everything was settled. I worried about what would happen to Jeremey if his parents wouldn’t help him. I hoped Dr. North would get him SSI money. But what if he couldn’t? “Mom, can Jeremey come live with us here if his parents kick him out? I don’t want him to live under a bridge.”
“His parents aren’t going to kick him out, and he won’t live under a bridge. Your dad went over to talk to Mr. Samson. Mrs. Samson got upset and went to her room crying and hasn’t come out all afternoon. I think her husband is ready to listen to a little reason.”
“Mom, if mental illness can run in families, she might be depressed too.”
“She might be.” She rubbed my arms. “Don’t worry about it. It’s all going to work out.”
I hoped she was right. “I wish I could make Mrs. Samson like me. I wish she thought I didn’t need to be fixed.”
“This isn’t about you, hon. This is about her processing what’s going on with Jeremey. She’s only seeing the outside of you, not the inside. She’s only looking at what makes you different and not at what makes you special. She sees safety in normal. But remember normal doesn’t mean
right
. It means average. Conforming. Why would you want to do that?”
“Because I want to drive a car and have a boyfriend.”
“You have a boyfriend. He called earlier to make sure you were okay and to ask if you were still visiting tomorrow. Remember, too, conforming to the way most people are means giving up a lot of what makes you
you
. If you conformed, you couldn’t see numbers the way you do. You couldn’t shut the world out with a little rocking and humming. You wouldn’t be you, Emmet. You’d be someone else.”
She was right, I didn’t want to be someone else. But sometimes it was so hard to be me.
Dr. North called in the morning and asked if I could come to a group session with Jeremey in the afternoon. I didn’t want to. I still felt bad about the meeting from the day before, but I did want to see Jeremey, so I said yes. I was glad I went. Jeremey’s smile made his whole face light up when I came into the room, and he hugged me.
“I’m glad you’re okay. I’m sorry for my parents.”
I nodded. I didn’t know what else to do.
“There’s good that came of it, though. My dad came this morning and told me they’d be okay with me moving to The Roosevelt, that they’d help pay what my job couldn’t cover until the SSI comes through. Dr. North still thinks I should move to the residential group home near the hospital first, though, instead of going home until our apartment is ready. My mom is pretty upset, and my dad says it might be best for everyone if we take it slow.”
I couldn’t believe it. I wanted to laugh, be happy, but I felt like if I did that, I’d find out this was a dream.
Jeremey’s smile fell. “Emmet, aren’t you glad?”
I tried to say yes, but I was so frozen. In the end all I could do was hug him. I held him tight, so tight it was almost too much, but I couldn’t stop.
Jeremey kissed my cheek and hugged me too. This time when he kissed my cheek, it was a longer kiss, and it made my skin tingle.
Dr. North wasn’t in the room, and I wanted to kiss Jeremey for real. I turned my head so our mouths met, and we kissed, mouths together, lips moving over lips while the electricity built up in my body. It was the same as being on his bed, the kiss before the hospital, except we were standing up. It was a good kiss, and everything felt right.
I belonged. I wasn’t normal, but I belonged—to Jeremey. We could stay boyfriends, and we’d get to live in The Roosevelt together, just like we wanted.
I smiled against Jeremey’s mouth, and he smiled back.
Chapter Fourteen
J
eremey
I
’d been tempted to move back with my parents after being discharged from the hospital, and when my mom and dad started accepting my condition after the disaster of a family meeting, at first I considered giving a return home a try. Dr. North made me wait to finalize my decision, and he asked me a lot of questions about why I wanted to go home. “Do you think you’ll be kicked out of the hospital?”
Well, not
kicked
, exactly, but yeah, I didn’t think I could hang out until The Roosevelt was finished. I wasn’t sure what would have happened if my parents had disowned me, but I figured now that they hadn’t, I
had
to go home. “I can’t move in with Emmet yet, so where else would I go?”
That was when he told me about the group home.
In my head I called it the halfway house, which I know the term is for people with drug additions, but it fit me too. I wasn’t ready for living on my own, and honestly, I worried if I went home, Mom especially would try to make everything the way it used to be. I didn’t know if I could be strong enough for that yet, and just thinking about it, Dr. North pointed out, increased my anxiety. The Icarus House was meant to be a bridge, he told me, between an institution and total independence.
I was confused. “Isn’t that what The Roosevelt is?”
“It is, in a way. The Roosevelt won’t have such a formal daily structure. Essentially there will be a common area for laundry and socialization, plus social workers will live on site and be available in case of trouble. Beyond that, though, the residents will be responsible for rent, utilities, everything but building maintenance. If you don’t clean your apartment, it won’t get clean. But if the social workers are concerned about how unsafe the room is, they might say something. And Bob will probably make occasional inspections to make sure someone hasn’t set up something that would harm the residents. At Icarus the residents are much more monitored. Many live there permanently or in similar facilities, and The Roosevelt is wildly beyond their reach. Some are like you, simply needing one more leg of recovery or a stop-gap between situations.”
I’d had no idea group homes existed—which was how most of my life felt right now. I felt like Alice, lost in an alternate world that didn’t always make sense or at least followed a logic pattern I’d never considered.
I went home for an afternoon the day I moved into Icarus. Mom wanted me to stay a night at the house, but she didn’t push when I said I didn’t want to. That was good, but things were still tense as I packed.
It felt weird to be home, even for a few hours. Everything was familiar, which was nice, but the house felt heavy too. It would be easy to slide into my room, to let my mom nag me to send clothes down the chute, to empty the dishwasher, and then go back to shutting out the world.
That wouldn’t be the case at Icarus. Dr. North had told me I’d have chores, house meetings in the morning and group therapy meetings in the afternoon. I’d made my peace with this and told myself it would be temporary, a bridge between the hospital and getting my own place with Emmet. However, when I arrived with Mom and Dad to check in, I became immediately aware of a challenge I hadn’t considered: the other residents.
To be blunt, the other men and women at Icarus were a mess, and it shocked me to think these were my peers. Sometimes their disabilities were starkly, physically obvious, from vacant stares and odd postures to loud noises and inappropriate gestures and comments. Some of them appeared normal until you tried to talk to them. One woman had severe schizophrenia and carried on whole conversations with people only she could see. One boy made noises that could have been the soundtrack to a horror movie—screams, moans and other elements of cacophony that made my skin tingle. A middle-aged woman had Down’s syndrome—she was my favorite because she didn’t make loud noises, and she always smiled.
Three residents were autistic, a condition I thought I was familiar with, but I quickly learned wherever Emmet was on the spectrum, it wasn’t
anything
close to these guys. They were a mixed bag of strange behaviors: one guy never moved, always sitting at a small table by the window watching the street, maybe rocking back and forth a little, sometimes humming. He only got up to go to the restroom, to eat and to sleep. Another guy was his polar opposite, talking nonstop and always moving. He had his own room, and it was a cluttered mess of clothes, books and broken things. He had a strict idea of how the house should be run, and something as simple as his cup not being in the right spot in the cupboard could send him into a frenzy.
The third autistic boy played solitaire and watched YouTube videos on an iPad, and he talked to the people in the videos. He wouldn’t speak to anyone directly, but if his videos were playing, sometimes he’d tell the people in the videos if he wanted oatmeal or pancakes for breakfast, stuff like that.
My parents flipped out.
“Are you sure you want to stay here, honey?” Mom kept asking me this as we set up my room. I could tell she was working not to shout or be angry and barely making it. “I understand you’re…sick, but you’re not like
this
. This isn’t the place for you. Come home. It’ll be so much better now.”
I wanted to believe her, but here’s the thing—Jan was with me too. While Mom made promises about how everything was different, Jan stood behind her, shaking her head and mouthing the word
no
over and over. The reason Jan had come all the way from Chicago to help move me in was to make sure I
did
move in. When my parents left, she lingered and drove the point home.
“I know this place looks freaky, Germ, but let me tell you how much better it is than Home Farm. You’ll get one good night, and then she’ll start undermining every decision you’ve made. You want to know what’s spread all over the kitchen table? Apartment brochures. Regular apartments close to campus. She still wants you to go to school, to be a real boy.” She ruffled my hair and kissed my forehead. “Except you
are
a real boy. You can do this. If your therapist said this is the place for you to be, then it is.”
I stayed, but the first night was horrible. My roommate was the YouTube-watching autistic boy, Darren, and I lay awake late into the morning listening to him snore as he tossed and turned in his sleep.
It was difficult to believe I belonged here. If I didn’t have my parents or The Roosevelt as a backup, I’d
have
to live here, or somewhere like Icarus, and the idea terrified me.
I told this to Dr. North when we had our session back at the hospital the next morning. “I don’t belong there. Or if I do, I don’t
want
to.”
“Tell me what upsets you specifically.”
Specifically? Where did I start? “Everyone is so broken. I’m not that bad, am I?” I sighed. “I guess I thought Icarus House would be a warm, safe place. It’s not. It’s not a
home
at all. It’s stark, cold and weird. We’re all the rejects nobody knows what to do with.”
I thought this might make him mad, but he only smiled a little sadly. “You will find, I’m sorry to say, this population is rarely given priority or much attention by our culture. Caring for adults with special needs is challenging on the best of days and always costs a great deal of money. Staff are paid poorly and often move to different jobs. Housing is rarely kept up. Food is government issued and not often prepared with the care one might expect at home. No, group homes are rarely homes at all, despite the best efforts by those who care for the residents. But they are better than institutions. In decades past, many of these people would have been institutionalized at birth.”
The idea of Emmet in an institution—of
me
in an institution—was beyond thinking about. “I guess I’m nervous about what happens if I can’t make it work at The Roosevelt and I have to live there.”
“Perhaps it would be better to focus on working to be sure you
are
successful.”
That would be smart, yes, but I’m rarely able to focus on the positive. I’m so conscious of the negative ready to pounce.
I tried, though. I didn’t have it in me to actively make friends, but as I sat in the living room watching daytime TV talk shows while Darren watched YouTube with headphones, I made an effort to notice the good things, not the bad. The room was threadbare and the furnishings tired, yes, but the room was actually quite clean. This, it turned out, was because of Carrie, the woman with Down’s syndrome. It was her job to clean up, and she loved her work. In fact she came through once in the morning with a dust mop and a cloth and again in the afternoon. No food or drink was allowed in the living room, so there were no wrappers. If someone got out a puzzle or a game, they had to pick it up when they were done.
The staff was also great. Sure, they spoke to most residents as if they were children, but honestly? Mentally a lot of them were. I noticed Darren got different vocal tones than Carrie. In fact the female staff member working that first day seemed to quietly favor Darren. As I watched the two of them interact, I thought maybe he felt the same way. His face didn’t change much, but his mouth almost smiled when she was nearby. I’d learned with Emmet that autistic facial changes are subtle and difficult to catch—but they’re always there.
I wanted to connect with Darren. Partly I was curious—I was about to live with someone with autism, so some recon couldn’t be bad, right? Also, there was something so comforting about him. While he wasn’t really like Emmet, he kind of was. Sitting on the couch next to Darren made me feel calm and okay. I still didn’t know how to interact with him, or if I should, but wanting to felt like a good start.
I admit, though, that while I could focus on the positive, I still couldn’t wait to move into The Roosevelt.
Emmet came to Icarus House the afternoon of my second day there. At first I worried it would upset him, because it was sometimes so loud, but he surprised me by being almost cheerful about the visit. In fact he knew several residents, including my roommate.
He also taught me the trick of how to talk to Darren.
When Emmet came into the living room and saw Darren sitting on the couch with his tablet watching YouTube, he smiled what for him was a pretty impressive smile. He didn’t say anything, however. He sat on the far end of the couch and remained still. Then, when Darren’s video finished, Emmet lifted his hands and began to sign. Not spelling the way we sometimes did, no ASL that Emmet had taught me, but complicated gestures I couldn’t understand.
For the first time since I’d met him, Darren put down his tablet. He signed back.
This went on for several minutes, and it was the damnedest thing because neither Emmet nor Darren looked at each other, but they seemed to see anyway. I, however, couldn’t stop staring. Every so often one of them would laugh, and sometimes Darren made one of his semi-articulate sounds. Eventually Emmet made one last sign and stood up. He took my hand, which made my heart flutter, and led me out back to sit in the garden on one of the benches.
“I didn’t know your roommate was Darren. He’s nice. We were friends in Iowa City. I didn’t know he was here in Ames now. That was a nice surprise.”
I blinked. “How did you know he was my roommate? I hadn’t had a chance to tell you yet.”
“Darren told me.”
“So you were using sign language?”
“Darren language. Some of it is ASL, but mostly he made up his own language. It’s simpler. He says he works at the library sorting books. He’s good at that kind of thing.”
He’d learned more about my roommate in ten minutes than I’d learned in a day. “How could you read what he said with his hands without looking at him? And the same for him with you?”
“We both have camera eyes. It’s easy.”
“You have
what
?”
“Camera eyes. A lot of autistic people can see things like camera pictures. We use our peripheral vision to see things, and we can remember what we see. It’s why sometimes we get overwhelmed in busy places. We take too many pictures.”
This potentially explained so much about Emmet. “Are you telling me right now, though you’re not looking at me, you’re looking at me? I mean, even though your eyes aren’t focused on me, for you they are?” Every time I said it, the words didn’t make sense.
Emmet smiled, understanding anyway. “Yes. I can show you. We’ll play a game. Hold up a number with your fingers and I’ll tell you. You can try to hide it a little to make it challenging.”
I did try, and he never, not once, failed to know exactly how many fingers I held up. I went into the house and got a book to hold up, and as soon as I held it close enough, he could read it from the side as well as he could in the front. In fact, it wasn’t as close as I’d have had to have the book reading it the usual way.
“That’s amazing.” I put the book down and shook my head. “You’re Superman or something.”
He smiled, but it was a subtle smile. “I am. Super Emmet.”
“Are you this way with everything? Can you hear like that too?”
“Yes.”
I never thought I’d be jealous of an autistic person, but I was. A veil had been lifted between us, and while I’d admired him before, I was besotted with Emmet now. “Everything about you is more powerful, isn’t it? When you smile, it’s big to you. And to you your voice isn’t flat at all. I’m the stupid one.”
“Not stupid. You can’t use the S word.” He rocked on the seat. “Sometimes autism is bad. Sometimes I don’t have control. I’m lucky. It’s not as severe for me, and most of the therapy worked to help me modify myself. Some autistic people have a difficult time. We have trouble sleeping, and our digestive systems can be sensitive. Darren can’t make his mouth work the way he wants. He thinks a lot, but he can’t make his mouth work right. He says people are too loud too, so he watches YouTube.”
“Is that why you sat so far from him? So you wouldn’t be loud for him?”
“Yes.”
Huh. I watched Emmet rock for a second. “How can I be a friend to Darren? I don’t know his sign language.”