Love on Wheelz

The very first day nurse we had was Chola. Chola was an older Nigerian lady with a very quiet disposition and frazzled hair. She was short and always had what can best be described as a fuchi face. Like someone perpetually farted on it. She walked slowly and hunched over, she was the essence of old. Despite all of that, she seemed like she knew what she was doing and that’s all we really wanted. So, on the first Friday of the first week, me and Amber were on our own for the first time. My mom had gone home for a couple of days in order to be with my brother for his birthday. I wanted to buy some UCLA swag for my family and I figured walking down to campus be good training for the nurse, since that’s what we would be doing every day.

Now, if you don’t know the UCLA campus, the whole thing is built on huge hill. The dorms are located at the top of the hill, everything else is at the bottom. It’s also pretty fucking steep. Like, “go too fast and you will die” kind of steep. Kind of ironic that I’ve avoided hills for most of my life and now I lived on one. The campus store was about a 10 minute walk downhill from my room for a normal person. That’s 20 minutes for me on a good day. For most people, going uphill is harder than going downhill. But for me, it’s the opposite. Going downhill is harder because gravity makes me slide down on my chair. Add in sidewalk bumps and frequent braking and you end up with me needing to be repositioned quite often. That means lots of stopping and going. And with the gradually increasingly steep slope, getting to the campus store is an exercise in patience and endurance. As we were soon to find out, our fine maiden had neither.

It started about halfway down the hill, when her face began to gradually scrunch into something resembling a puckered up asshole. She wasn’t saying anything yet, but you could tell she wasn’t happy by her huffing and puffing that she was not enjoying herself. Now, when I’m in my chair, I’m always in some kind of pain or discomfort. If it’s not my leg falling asleep or my back hurtling then it’s trouble breathing or sitting on my balls. So I don’t have a lot of sympathy for healthy people that start complaining about a little bit of walking.

“My feet hurt.” she said.

“We’re almost there.”We were on our way back up the hill, granted, it’s a really steep hill, but we had taken a fifteen minute break before hiking back up. Whatever, I thought, she’s just old. But the more we climbed up the hill, the more irritating she became. My feet this, my feet that. By the time we got back to our dorm she was clamoring for a break, “I need to sit down for a few minutes or I won’t make it” she said. So we let her rest in the lounge while Amber and I got lunch at the cafeteria.

“How is she gonna walk you to school everyday if she gets this tired every time?” Amber asked.

“I don’t know, but the fact that I have more stamina than my nurse scares me a little bit.”

When we came back from the cafeteria she was in the lounge with her shoes off and her feet up on the couch. That was her last day with us. Not because I fired her, no. The story we got from the agency was that she broke her foot when a patient ran her over. It wasn’t me, I swear.

The first nurse we had was a tall Nigerian woman in her fifties with braided hair. She went by “Peace” and was always grinning. Every time I asked for something, made banal chit-chat or took a shit, that creepy grin was always there. It was like she was saying, “Yeah, I work for you now, but if you ask me to scratch your balls one more time I will murder you in your sleep.” Except that was never going to happen because she fell asleep the first night she was there.

“Peace. Peace.” No response. Her chin was firmly planted on her chest. “Peeeeaaace. Peace… PEACE!” It didn’t matter how much I called her, she was dreaming of her sweet Nigerian prince. My mom eventually woke up and had to lightly nudge her awake. She probably just had had a tough day… hopefully.

***

I woke up at 7 am with that feeling you get as your rushing down a rollercoaster. My mind raced as we walked around the dorms, all the buildings looked so tall and foreign. There were random people walking around that I’d never seen. It was like… communal living. With people you don’t know. And stairs! Humongous staircases of death.

Back home I had awesome nurses. They knew me and, more importantly, I trusted them. I’d learned through my experiences that there are some seriously stupid nurses there. All it would take was one nurse that didn’t know what they were doing for me to go the way of the dodo. And this day nurse that the agency had sent, I had no way of knowing if she was good at her job until I was actually in a life and death situation.

And, as we were driving around Westwood, looking for a place to eat, I felt the despair migrate from my gut to my chest and form a lump in my throat along with a hot, wet sensation in my eyes. I wanted to scream. What the hell had I gotten myself into? I was so far away from home. I was putting my life in the hands of nurses I didn’t know and a 23 year old girl whom I’d known for five months. What the fuck am I doing? I thought.

I spent the rest of the day in a daze. Shopping for things I needed. Shower curtains, coat hangers… what did it matter? I didn’t belong there, I didn’t feel like a 20 year old college student. I’ve never quite felt like people my age. They don’t have trouble communicating with people, it doesn’t take two people to get them in and out of bed and they aren’t tied to battery life They can go anywhere whenever they want and not have to worry about whether they’re sufficiently prepared if they have an emergency. No matter what, I’ll never be able to have a life like theirs. And yet, here I was, foolishly trying.

That night I sat in my bed staring at the wall. It was beige and bare.

“Hey, what’s wrong?” Asked Amber.

“What do you mean?” I was trying to avoid the question.

“You haven’t been yourself today. You’ve barely said a word.”

“I know.”

“So… what’s wrong?”

I guess I couldn’t avoid it anymore, “I’ve been kinda having a breakdown.”

She thought for a second, “Are you regretting your decision?” she asked, looking worried.

“No. It’s just… scary.”

“I know. We’re both far away from home and in shock right now. I guess we’re just going to figure it out together.”

“I guess so…”

She said together, but I knew I was alone. If it were up to my family I would’ve stayed in San Diego and, while Amber was great, it’s not like she was there out of kindness of her heart. She was going to go to grad school for a masters in psychology and was getting free rent plus a salarie. I was the only one with my best interests in mind, which I guess is just part of life. I hadn’t realized that until then. The only way this was gonna work was if I made it work. I had bet on me and, for the first time in my life, was doubting myself.

I’ve been trying to write this story for a few months now, but I just can’t seem to get it “right”. There’s so many layers that I’m not sure where to start. So I guess I’ll start from the beginning.

“Wow, you have a lot of stuff.” my mom was watching Amber put her things in the “closet”, which was really a nook with a door.

“I wouldn’t talk if I were you, Ms Walk-in-Closet.” Amber said half jokingly.

“Well, that’s my house and I’ve earned it.” my mom didn’t like the joke.

Things had gotten off to an awesome start. We were all in shock over how much smaller the room was compared to my room. There was no way we’d be able to fit all of our stuff in there. I don’t mean clothes either, my entire wardrobe consists of seven shirts, four pairs of pants and one pair of shorts. What took up the most space were all my medical supplies. That plus all of Amber’s things meant that we would have to fit both our libes into something not much bigger than most hotel rooms.

Everyone was silent as they unpacked The only time they looked at each other when they passed by each other as they shuttled in and out of the room. And even then, it was only for a second. All I could do was sit awkwardly as the two people I needed the most were already fighting.

“I need to get some stuff from my car.” That was code for ‘I need to get the fuck outta here before I kill someone;.

No one said a thing as Amber walked and no one said anything afterwards either. They just kept on doing whatever they were doing.

“Where’s Amber?” I asked innocently, trying to assess the situation.

“She’s outside pouting somewhere.” said my mom.

I had originally posted a job listing for a caregiver on craigslist and Amber had come out to interview all the way from Chicago to interview. She had completely relocated from Chicago to San Diego and then to LA. At first, she was staying with a friend, but, when that fell through, we let her stay with us. Partly because I didn’t want her to have to go back to Chicago and partly because I thought she would be better prepared once we were without my parents. There was always a lot of tension between her and my parents. I think they felt like she was the one taking their boy away and that was all coming to the surface .

“You need to understand, she moved halfway across the country and she’s probably in shock right now This is a much smaller living space than we’re both used to. Give her some slack.” She thought about this for a few seconds.

“She works for you, don’t forget that. She barely helped the nurses when she was at the house and you never let us say anything because you were too afraid she’d leave. Now I’m afraid she’s going to be the same way.” Amber came back in, “I’m going to get something to eat.” said my mom. Sometimes I think she’s really immature. Nevertheless, I needed her help. She was gonna help us train the nurses and get me settled. Amber was gonna be my lifeline there and she had to get along with her. Why? I don’t know. My mom has this weird power. She has the ability to make everyone feel like they have to answer to her when they really shouldn’t. And she was the one that had convinced my dad to support me financially. She had the power, whether she knew it or not.

“Hey Amber, we need to talk.”

“Yeah. We do.” She sat down next to me.

I hate heart to heart talks, they make me feel naked. I sighed, “My mom feels like you weren’t doing enough back home and she feels like you’re…” don’t say lazy, don’t say lazy, don’t say lazy, “Like you won’t do enough here. And she’s… She has trouble letting go. She’s taken care of me my whole life and now she won’t and she doesn’t know how to deal with it. She doesn’t know how to properly deal with her emotions, so she just freaks out. Just keep that in mind.”

She thought for a second, “I understand, but you guys need to see it from my perspective. I moved half way across the country and left everyone I know. Everything I own is in my car right now and I have no idea how it’s gonna fit here. When I got here I thought ‘I could just drive back to Chicago and end this whole crazy part of my life right now’. I’m scared, your whole life is going to be in my hands and I’m not completely sure what’s expected of me.”

What kind of clusterfuck had I gotten myself into? Fuckin’ women and their feelings. “Okay, this what we’re gonna do, my mom’s gonna come in and she’s gonna say her piece and then you’ll say yours and we’ll go from there, alright?”

And that’s what we did. Amber explained how she felt so lonely because she didn’t know anyone. How she fit her whole life in the back of her car and she started to cry. She understood all this when she took the job, but it hadn’t really hit her until now. And that she wasn’t outside pouting, she just wanted to remove herself from a bad situation before it got worse. Then my mom talked about how she was so scared to let me go. How she just wanted for me to be happy, then she started to cry and they stood up and hugged each other. I should go into politics, no one would ever fight anymore.

They went to go get some more stuff out of the car while my dad stayed with me, it was his turn to talk. “I just want you to know how proud I am. No one in this has family has ever gotten into a school this good. You have cousins that, despite being physically fine, don’t have the drive or brains to get into a school like this or even move out of their house. Every time one of your aunts or uncles asks me how you’re doing, I tell them you’re going to UCLA and they’re always surprised. You have no idea how many people you inspire. Your mom and I will always be there for you and you’ll always be my bruin.” He hugged me and kissed me on the forehead. I just stared blankly and nodded.

He had never opened up to me that way. He always kept to himself and never ever told anyone about his feelings. I had to be doing something right for him to talk like that.

Maybe this wasn’t a such clusterfuck after all…

Sometimes I feel like my life is a montage of awkward moments. From being asked to get up to not being understood, it seems as if I’m a magnet for uncomfortable situations. This is the story of another one of these events.

Me and my new caregiver, Amber, were shopping at our neighborhood Costco shopping for some groceries. It was about 6pm or thereabouts, so it was packed up the ass. Going around corners involved slowing down and hoping a middle aged soccer mom wouldn’t crash into me at 3 mph, I can’t handle that kind of high speed collision.

So Amber was walking in front of me for completely unrelated reasons looking for whatever she was looking for. I was lost in my own head thinking about how much I hated Costco and whether or not a wheelchair bomb would create a big enough explosion to bring it down. Probably not, “DEATH TO THE SOULLESS BOX STORE!” wouldn’t really pack that big of a punch. Especially when you’re going 0.5 mph and can’t scream very loud. I discarded the idea.

As I pondered other ways to destroy this place (become CEO and turn it into a Chuck E. Cheese? Buwn it down, to the gwound?) I heard a loud, high pitched voice behind me. It kept repeating the same thing over and over again. After about three times of hearing the same thing, I realized it was addressing me.

“WHAT HAPPENED TO YOU?” A little boy of about 10 years of age sprinted up next to me. He had short hair and grandma glasses. You know the ones with the string that goes behind the head? Yeah, those. He looked up expectantly at me, waiting to hear a story about how I fought off a pack of roving ninjas that were trying to eat baby kittens. But I froze.

My face turned ten different shades of red and I felt my body temperature rise about 5 degrees. I knew the answer to his question, but I was in shock. For all my experiences I’ve had, no one had ever asked me point blank like that. Everyone thinks it and wants to ask it, they’re just too polite.

“WHAT HAPPENED TO YOU?” he repeated, “DID YOU BREAK YOUR BACK?” The concept of an inside voice was completely foreign concept to this kid.

“Umm… I was born this way.” I said. I wasn’t really born this way, but that was the quickest way to explain it and get out of this whole embarrassing situation. I felt like everyone was staring at us.

“WHAT HAPPENED TO YOU?” I started to realize that he wasn’t quite right. That, or he couldn’t hear me, which was entirely possible since I can’t talk very loud. I looked at Amber for help, she was as embarrassed as me.

“Um… he was born that way.” She said with a smile and a sweetness in her voice.

“AND WHO ARE YOU?” He pointed at her.

“I’m his friend.”

“I’m sorry, he’s got problems.” His mom came out of nowhere. Apparently she had been there the whole time. Why she hadn’t dragged him away was beyond me.

“ARE YOU GONNA BE ALIVE?” He asked me. I suspected he was trying to ask if I was going to die. I just shook my head no. You can stop this at any time lady, I thought.

He then started to ask about my equipment, “WHAT DOES THAT DO?”

“It helps him breathe.”

“WHAT’S THAT FOR?”

“So he can drive his chair.”

Finally, when it looked like he was going to start touching stuff, the mom apologized and dragged him away.

Amber and I looked at each other both amused and embarrassed. Nothing like that had ever happened to me and I had no idea how to feel about it. We kept walking, looking for something that we couldn’t remember. Our faces looked like someone had asked us to calculate the square root of chicken or something equally nonsensical.

“Did that hurt your feelings?” Amber asked.

“Umm… I don’t think so.” I said hesitantly. I lied a little bit, it kinda did. Intellectually, I knew that he didn’t know any better, but it still reminded me of how different I am from everyone else. That’s not something that I enjoy being reminded of, especially when I’m shopping for groceries. But I guess that’s what makes my life unique and exciting. And no one wants a boring life, right?