This was possibly the most important day of my life. Marian had scheduled a visit for me at nursing facility that would have a bed available at the end of the month. I wasn’t very excited about it, but my 21st birthday was fast approaching and I needed to make a decision. Marian told me this was a good place and she thought I’d like it, although I was kind of turned off by all the photos of old people on the front of the brochure.
I was pretty anxious about seeing the place. I wanted to like it, because I knew my options were not great at this point. Wherever I picked, I might end up living there for the next fifty years, if I ended up living that long, which I doubted I would. My lifespan was going to be a lot shorter due to being a quad. I guessed I’d probably die around age sixty.
As Casey was getting me dressed in the morning, I was surprised to see my mother walk into my room. I hadn’t seen her since that incident at the restaurant on my birthday, which was now a really long time ago. I had been so angry at her that day, but I really wasn’t anymore. I was beginning to realize how much work my care involved and I didn’t blame her for not wanting to do it. She gave a little sad smile when she saw me. “Hi, Ethan,” she said.
Casey winked at me, “I’ll give you two a moment of privacy.”
I was half-dressed. Casey had gotten my shirt on but my pants were still lying on the bed next to me. I didn’t feel self-conscious though. After all, this was my mom.
My mother held up a paper bag, “I brought you something.”
She pulled a big package of Depends out of the bag. I’m a little embarrassed to admit that my eyes lit up when I saw them. I really hated the diapers at the subacute and I had been gunning for the Depends all year. Like I said, it’s embarrassing that I was so excited over some diapers, but I couldn’t wait to get them on.
“Thanks,” I said.
Mom sat down next to my bed, “Marian told me that you’re going to see the nursing home where you’ll be living today and I want to come with you. I want to continue to be a part of your life, even if you’re not living with me.”
“I… I want that too,” I said.
Mom smiled and laced her fingers into mine. “I want to come visit you at least three times a week at the home. When you were younger, we used to be very close and I miss that. I want us to be best friends again.”
Then she hugged me and got kind of tearful. I’m not really big on the tear-jerking scenes, but I do love my mom and I didn’t like being angry at her. Plus I was probably going to be bored as shit at the nursing home, so it would be nice to have some company.
Casey came back in to finish dressing me and my mom said she was going to take me to lunch before we left. At my insistence, Casey changed me into the Depends and I was in love with them. Compared with the diapers I usually wore, you couldn’t even tell I had them on. I know it sounds funny, but I kept looking down at my crotch in admiration.
We went out to the same restaurant where we got into the fight last time. I was a little embarrassed to go back there, but it was a long time ago and probably nobody remembered. When I approached that same full length mirror that had shaken me last time I was here, I felt a lot more confidence. I had seen myself in the mirror many times since then, and I finally was beginning to connect the reflection of the guy in the wheelchair with myself. And there was no sign to give away that I was wearing a diaper (for a change) and even my legbag was pretty well concealed.
Still, there was a lot to critique. I was wearing a T-shirt and my arms were really withered and atrophied, looking really useless strapped to the armrests. In the year since my injury, I had regained all the weight I had lost, plus about ten pounds… but the weight distributed differently than it had been before. My arms and legs were pretty skinny still, while my abdomen and face packed on most of the pounds. For the first time in my life, I had a huge gut and the beginning of a double chin. I knew I needed to watch my diet really carefully, but my metabolism was ridiculous. I could eat one olive and gain five pounds.
At the restaurant, I picked a dish that was on the “light” menu and tried not to eat too much. My mom took turns feeding me and herself, and honestly, she did a great job. I was really looking forward to seeing more of her. She was right that we used to be close when I was younger and I guess things just fell apart. Probably because of my stepfather.
After I got back from lunch, I was loaded into a van to go to Shady Oaks Nursing Facility. Marian also came along, so she could rave to me about how wonderful the place was. She had told me at least five times that this was the best I could do while on Medicare. She said that some of the other places that were willing to take me were “really awful.”
When I saw Shady Oaks out the window of the van, my heart sunk. If this was the best place out there, I would have hated to see the places that were really awful. It looked really dingy and run down. “Depressing” was the word that popped into my head.
“I don’t like it,” I said.
“Ethan, we haven’t even gotten out of the van yet,” my mother said in a scolding voice.
I didn’t want to be difficult so I agreed to give the place a chance. I followed my mother and Marian to the front entrance, wondering if I could make a break for it. I wondered if anybody picked up quadriplegic hitchhikers.
We were met at the front entrance by a busty black woman who called herself Olivia. She was actually sort of pretty, but my first reaction was to feel kind of afraid of her. She looked like the kind of woman who didn’t tolerate any bullshit.
“You must be Ethan,” she said to me. “I’m going to be the charge nurse on the orthopedic floor where you’ll be staying and I’ll be showing you around today.”
“Hi,” I said. In the time we were at the entrance, several old people in walkers and wheelchairs had shuffled by. I got the feeling I was going to be the youngest person here by about fifty years.
Olivia led us to the elevator and we went up to the third floor. She explained that the floor I would be staying on had less demented people and more people here for hip or knee replacements or fractures. “There are even a few younger people like you,” she said.
I allowed myself to cling to a tiny bit of hope, but as I expected, the third floor was just as dreary as the first floor. The first thing I saw was a ninety year old guy slumped in a wheelchair with drool running down his chin. Nice. “Hello, Mr. Goldman,” Olivia said to him.
Olivia led us around, first to the bleak looking community room with a tiny TV set that looked like it was even older than Mr. Goldman. “Are there any headsets for the TV?” I asked. “So I can control it?”
Olivia looked at me like I was out of my mind. I guess it was a pretty dumb question. “No, we don’t have that kind of thing here.”
Next stop was the cafeteria, which was equally depressing. At least I could see that I wasn’t going to be the only one who needed to be fed. My eyes focused on a woman who looked like she was being fed baby food. “You have solid food here, right?” I asked.
“I’m sure we can find something solid for you, honey,” Olivia told me, rolling her eyes at my mother and Marian.
Then I got to see one of the rooms. There were four residents per room, which Marian assured me was really good. As I wheeled into the room, a smell hit me and I knew immediately what it was: shit. This room smelled like shit. I had smelled a lot of shit in the last year, but this was so bad, I thought I was going to choke. I looked up at my mother and Marian, and they were both pretending not to notice, but I could see their noses twitching.
“This room smells like shit,” I announced.
“Ethan!” Mom snapped at me.
“Well, it does.”
“We don’t talk that way around here,” Olivia said, giving me a sharp look. She glanced around the room. “I think Mr. Johnson needs to be changed. I’ll get his nurse when we’re done.”
Yeah, no rush. Just a guy lying in the most disgusting shit I’ve ever smelled. Probably for hours.
“We also have another patient here who’s a quadriplegic like you,” Olivia said. “He’s pretty young too—only thirty. He’s been here… actually, since he was your age. Would you like to meet him?”
“Yes,” I said, even though I had a really bad feeling about this.
The thirty year old quad, Jeff, was lying in his bed on his side when we got there. I could see he had a trach and a tube coming out of it, so I guessed he had a higher level injury than I did since he was still on a vent.
When I saw him, I felt ill. All I could think of was that he was injured when I was injured, so this was going to be me in ten years. And I didn’t like what I saw. He might have been thirty, but he looked at least in his forties. He was really obese, especially in his abdomen. He was covered poorly with a blanket, giving me full view of something else that horrified me: a bag of shit protruding off his abdomen.
“Hi, Jeff,” Olivia said. “How are you today?”
Jeff paused and spoke in a hoarse voice: “I’m okay.”
“Jeff has been staying in bed because he’s working on healing some bedsores,” Olivia said. “Because of his weight, he’s been getting a lot of them.” She spoke to Jeff again: “This is Ethan. He’s going to be moving in with us at the end of the month.”
“Hi, Ethan,” Jeff said, speaking with the vent. “Welcome to Shady Oaks.”
I don’t know what it was, maybe the smell or the heat or what, but all of a sudden, I started feeling really dizzy. I felt my eyes rolling up a little bit and there were beads of sweat on my forehead and I was scared I was going to pass out.
“Ethan, are you okay?” Mom asked me.
I shook my head.
She seized the handles of my chair and took me out of the room. I felt like I was having trouble breathing and my face was broken out in a cold sweat. My mom and Marian were bent down in front of me. “He’s really pale,” I heard my mother say to Marian. Her voice sounded very far away. She stood up and said to Olivia, “Is there a bed that he can lie in?”
I felt myself being pushed into one of the rooms. I didn’t see a lift in the room, but it didn’t matter because big Olivia just heaved me up and into the bed. She arranged my arms at my sides in a businesslike manner, then left my mother to attend to me.
A wet cloth was lowered onto my forehead and I slowly started feeling a little better. As I lay in the bed, I realized that this might be the very bed I’d occupy next month. I looked around and didn’t see any kind of nurse call button. I guessed that if I needed something, I just had to wait around for someone to come in.
“Mom,” I whispered. “Please don’t make me live here.”
My mother’s face filled with guilt. She should have felt guilty. What kind of mother sends her youngest son to live in a hellhole like this?
“Don’t let him guilt trip you, Maggie,” Marian said. “He knows that he requires intense 24 hour a day care and you can’t provide that.”
“Shut the fuck up, Marian,” I snapped. “This is none of your fucking business.”
“Ethan, I’ve had your best interests in mind since I met you,” Marian said. “You’ve fought me every step of the way, but I’ve still been working hard to make sure you wound up in the right place. I know you’re scared, but believe me when I say that you’ll get used to living here. And you can be assured that most of the other facilities are much, much worse.”
“Look at that Jeff guy,” I said. “He’s… a mess. I don’t want to be like that.”
“That’s entirely your decision,” Marian said. “He let himself go, let himself gain way too much weight. He made his own bed.”
I thought of the weight that I myself had gained in the last several months, despite all my efforts to diet. Jeff’s situation didn’t seem like a worst case scenario as much as it seemed like an inevitability.
But what choice did I have? Even if my mother agreed to take me in, Dan would never go for it. He’d make my life just as miserable as Jeff’s. “Okay,” I finally said.
I looked around the room at my new home.
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One thing that bugged the crap out of me at the subacute was the fact that they never bothered to announce visitors. Not that I got many visitors, but it would have been nice if I knew when they were coming so I could try to make myself somewhat presentable. (Or ask someone else to make me more presentable.)
So I was not pleased when the first sight I saw upon opening my eyes in the morning was my brother Keith’s face. Well, I was happy to see Keith, but I wished I wasn’t lying in bed when he arrived. If I knew he was coming, I would have asked Casey to put me in my wheelchair. Instead, I was lying in bed with the covers pushed off me due to the heat, my half-naked body and diaper plainly visible. I mean, there’s no point in being self-conscious about my body when pretty much everyone in a five block radius had seen me naked, but not Keith. He was my big brother and I wanted to look good for him. I’d basically spent my life trying to impress him.
“Ethan,” he said, “wow, how are you doing?”
“Uh, okay,” I answered. I realized it had been a long time since Keith had seen me. He’d visited a bunch of times when I was first injured, then disappeared for a long time. I had no idea what happened to him, but then Dan’s comment about him being in jail for a DWI cleared things up. I guessed he must have gotten out of jail and come to see me first thing.
“You look… different,” Keith commented.
I didn’t know what that meant. “Different” compared to what? “Different” compared to my early days in the hospital when I was on a ventilator and half-dead? Or “different” compared to the way I looked before I got hurt?
“I mean, you look better,” Keith quickly amended. “Sheesh, I thought you weren’t going to make it for a while.”
“Me too,” I said. For a second, I had the fleeting thought that I wished I had died.
“I guess Dan told you,” Keith sighed, “about why I haven’t been around.”
“Yeah, he told me.” I lost count of how many DWIs Keith had been arrested for. He was kind of a mess, but he was my brother and I still loved him.
Before we could get into it, Casey came in to get me out of bed. My brother and I have similar taste in women and I could see Keith’s eyes bugging out when he saw Casey. “Well, hello,” he said to her. I thought she might slip on the drool he left on the floor.
Casey giggled, “Hello, yourself. You must be Ethan’s brother. I can see the resemblance. I’m Casey.”
“Casey,” Keith said, grinning at her. Keith could kind of be a slimeball when hitting on girls. I hoped I was never that bad. “I had no idea that Ethan had such a sexy nurse.”
She just laughed politely. I was actually kind of impressed with how coolly she was brushing off Keith’s advances. Most girls tended to like him, because he was pretty good looking. “Well, Keith,” she said. “If you’ll excuse me for a moment, I have to get your brother into his wheelchair.”
I didn’t want to ask Keith to leave, but I was sort of hoping Casey would ask him or he’d leave on his own. Keith might have left, but he was too focused on Casey. So that’s how it ended up that he got to watch the whole painful process of me getting my diaper changed, having my bag of urine emptied and strapped to my leg, then the struggle to get my shirt and pants on. By the time Casey unloaded me from the Hoyer lift into my wheelchair and strapped me in, Keith looked really pale. He held off on commenting until Casey was gone.
“Wow,” he said. “You do that every morning?”
“Well, yeah,” I said, blushing a little. “How else would I get ready?”
“It’s just… a lot,” Keith said. He had forgotten all about Casey now. “Can you move your arms at all?”
“No,” I said. I knew the next question coming.
“Are you going to get better?”
“No, probably not,” I said.
Keith turned a shade paler and sat down on my bed. “Wow…”
“It’s okay though,” I said confidently. “I mean, I needed help to get ready and all, but now that I’m in my wheelchair, I can move around on my own. Here, I’ll show you.”
I explained to Keith how all the controls worked on my chair and I demonstrated them. If I hadn’t been in the chair, I would have let Keith sit down and have a go at it. He seemed to be relaxing a bit and wasn’t quite as horrified, which was good. I then showed him how I got out of my room and we went down the hallway together, then back to my room. Actually, as I was demonstrating it to him, I felt a little proud of myself. Back when I first got this chair, I really sucked at operating it, but now I was a pro. I never thought I’d be this comfortable with the sip and puff, but it felt like second nature now.
“You’re really good at it,” Keith commented when we were back in my room. “In fact, it seems like you’re doing really well in general.”
I was happy to hear him say that. I didn’t want my big brother to think I was a wreck. “Thanks,” I said.
“Maybe everything happens for a reason,” Keith said thoughtfully.
Huh? What the fuck did that mean? “You mean God wanted to cripple me?”
“No, that’s not what I mean,” Keith said, “I mean, when I look at you, you’ve really gotten yourself together. You’re a different person than you were before. That’s what I’ve been trying to do for myself, but it’s been hard. It took landing in jail before I got myself in AA and even now, I’m having trouble quitting drinking.”
“You’re in AA?” I was surprised and happy to hear that.
“I’ve been going,” Keith said. “But look at you, you quit drinking and you didn’t even need to go. You’re totally clean.”
“Yeah, but I’m not an alcoholic like you,” I said.
I thought Keith was going to be angry at me for saying that, but I thought it was something he needed to hear. He had to admit that he had a problem. But instead of being angry, he just gave me this kind of sad look. “You’re joking, right, Ethan?” he said. “Mom was so worried about you. Last year, she kept telling me she was scared the police were going to call and tell her you were dead.”
“She was worried about me?” I cried. “She was always worried about you!”
“Come on, how often did you go out drinking last year?” Keith said. “I think this is the first time I’ve talked to you sober in about two years.”
I stared at him. That couldn’t be right. Keith was… what was the word for it? Projecting. He was projecting his drinking problem onto me.
“You flunked out of college,” he went on. “And you had all those DWIs. Then you punched Dan in the face when you were drunk.”
“I did?” I didn’t remember that at all. I wished I did. I did remember the DWIs. That was kind of bad, but it wasn’t my fault…
“Look, it’s all in the past,” Keith said. “All I’m saying is that maybe becoming a quadriplegic is what it took to get your life in order. You were a mess before. And I can honestly tell you, Ethan: I think you look great now. I’m proud of you, little brother.”
For a moment, I allowed myself to think back to before. Yeah, I did drink a good amount, but I never thought I was an alcoholic. Yet… I remember my friends giving me funny looks when I was having a beer in the morning (but how else are you going to cure a hangover?). A few times they tried to talk to me and I just got pissed off and didn’t listen. And Mom… she and I used to be close, but then things just fell apart. Like school. Like everything.
Maybe Keith was right that things were going well for me. I’d been able to maintain a relationship with a girl for the first time in my life. And my OT told me that she thought I might be college material. I never thought I could manage college, but I was definitely thinking a lot clearer than I used to.
Then again, how could becoming a quadriplegic be the best thing that ever happened to me?
“I’m really going to put in an effort,” Keith said. “If you kicked it, I can do. I’m going to keep going to AA and I’m… I’m not going to drink anymore. At all.”
I felt myself swell a little with pride: Keith wanted to be like me. I had spent my whole life looking up to him and now he was the one looking up to me. This was an incredible moment for me.
“Anyway,” Keith said, “you want to show me around?”
I was actually really excited to show off my brother to everyone. Keith was always the coolest guy I knew. Even when he got himself screwed up with drinking, he was still the coolest guy I knew. He was three years ahead of me in school and just the fact that he was my brother always earned me mad cool points.
I introduced him to all the nurses and the rest of the staff, and he did his usual thing of hitting on the cute ones. A few of them were really going for it too, I could tell. Like I said, Keith is a very good looking guy.
After we left the nursing station, Deanna wheeled by and I stopped her, “Hey, Deanna, I want you to meet my brother.”
Her face lit up, “Wow, Ethan’s brother. Nice to meet you.”
Keith nodded at her and smiled. “Yeah,” he said.
“You guys look a lot alike,” she said.
“That’s what they say,” I said. Or at least, they used to say that.
Keith still wasn’t saying much, so Deanna excused herself and moved on. As soon as she was behind us, he commented to me, “Yikes, what a freak. You’re not actually friends with her, are you?”
I really, really wished he hadn’t said that. I especially wished he hadn’t said that within earshot of Deanna. I knew she heard his comment and knowing her, she just let it roll off her back. Or she would have, if he were anyone else except my brother and he had said it to me. I knew she was waiting to hear my response.
I always wanted to impress Keith. When I had a date with a hot girl, I tried to bring her home so that he could meet her and be impressed with me. If he knew that I dated Deanna, he’d think less of me. A lot less.
Then again, I really cared about Deanna. The truth was, I loved her and I didn’t want to pretend I didn’t know her just to impress my big brother.
“Actually,” I said, “Deanna used to be my girlfriend.”
Keith laughed hysterically, “Yeah, right.”
“I’m serious.”
Keith stopped laughing. He looked back at Deanna then at me, probably thinking a few not so flattering thoughts. I expected some sort of snide comment, but all he said was, “Okay, good for you, man.”
I was afraid he might ask me something else about Deanna, so I made an effort to quickly change the subject. The last thing I wanted to have to explain any of the details of our relationship. And I didn’t want him to realize quite how into her I had been. Or that she was the one who had dumped me.
Luckily, I got the diversion I was looking for. Dylan came wheeling down the hallway, looking pissed off as usual. If anything, he had been acting worse since Deanna and I broke up, because he realized that he wasn’t being rejected because of me… he was being rejected because he sucked. He’d been getting increasingly hostile toward me and I was tempted to “tell” on him, even though I didn’t want to be that kind of guy.
If Dylan had realized that my brother was right next to me, he never would have done what he did: as he was wheeling past me, he picked up a cup of water that was on his tray and dumped it on my chest. Most of the water hit me on my lower abdomen and crotch, giving me that coveted look of having wet my pants. He had amazing aim for a cripple.
Believe it or not, this was not the first time Dylan had done this to me. It was the third time, actually. It was incredibly juvenile, although admittedly his options for torturing me were kind of limited. The other two times, I just kind of took it. I yelled at him, of course, but then I just let it go. I mean, it was just water and it would dry. And I looked dumb, but it wasn’t like I felt wet and uncomfortable. I couldn’t feel it at all.
But when he did it in front of Keith, my brother’s eyes widened and he stared at me. “Did he do that on purpose?” Keith asked me.
And I nodded. Because somehow it’s okay to tell on people to your big brother.
“Hey!” Keith yelled, racing down the hall after Dylan. It was Dylan’s bad luck that he was wheeling away from the nursing station, so there was no one to intervene. “Hey, you!”
Dylan stopped his chair and looked up at my brother. Like me, Keith was close to six feet tall. Unlike me, he was muscular from years of working out in the gym. And he wasn’t disabled at all. Dylan looked up at him and I could actually see the color draining from his face. “Uh, yes?”
“Did you just dump water on my little brother?” Keith snarled.
Dylan just stared, unable to speak.
“Answer me, you little shit,” Keith said in a voice that was menacing but low enough not to attract attention.
“I… um….”
Keith lowered his face to get real close to Dylan. “I’m going to tell you this just once,” he said. “If I ever hear you were bothering Ethan again, I’m going to come over here and break every single bone in your body.”
Dylan didn’t say anything but I could actually hear him swallow.
“You get me?” Keith said.
“Yes,” Dylan squeaked.
I was amazed. I couldn’t remember the last time Keith had stood up for me like that. I think I had been like… six years old. That’s what big brothers were for though, right? To stand up to the bullies. Maybe I was severely disabled, but at least I had an able-bodied brother to look out for me. And I knew with certainty that this would be the last time I’d ever take any shit from Dylan.
As Dylan wheeled away, Keith flashed me a grin. “So did I take care of him for you?”
“That was awesome,” I said. “Thanks.”
For a second a thought crossed my mind: maybe I could live with Keith. Maybe this was a way to avoid Shady Oaks. I mean, he loved me and I knew that he didn’t want me to end up in a nursing home. Sure, he was a little freaked out when he saw Casey doing my morning routine, but he’d get used to it. And then I wouldn’t have to deal with that asshole Dan.
“I can’t,” Keith said, as if reading my mind.
“Can’t what?” I asked innocently. Damn.
“Ethan, I’m living in my fucking car,” Keith said, his face turning red as he made the confession. “I have no money… I lost my job when I went to jail.”
“Oh…”
“Maybe someday,” Keith said. “When my life is back on track… I need a job and I need to quit drinking for good. I don’t want you to live in a nursing home the rest of your life so… maybe in a few years, if Mom can’t…”
It felt like an empty promise to me but I nodded and said thanks. Like Mom, Keith promised to come visit me often while I was at the home, but honestly, I wondered how long any of these visits would continue. Once Keith got his life together, he was going to want to settle down with a girl and get married, not change his brother’s diaper. I predicted that ten years from now, Keith wasn’t going to be much of a part of my life. I also predicted that ten years from now, I’d still be a resident at Shady Oaks.