My Perfect Imperfections (12 page)

All hell breaks loose when I discuss my plans with my parents.

“Have you lost your mind, Lily? No way! I forbid it!” Dad yells as soon as his mind processes what I’m saying to them.

“Lily, aren’t you happy with us? Why would you want to leave your home?” Mom asks, confused by my request.

“I need my own life,” I say with my device. I’ve been expecting the resistance from my parents, so I’m prepared for this fight.

“We give you all of the freedom you want, Lily,” Dad insists, pacing the floor.

“It’s not far from here. You can come see me every night if you want. I need to meet new people and be on my own. Please, I’m an adult now.”

“Lily, what is this about? Where is this even coming from?” Mom sits down in the chair next to me.

“I need my own life. Please, let me live it. I don’t want to be a twenty-four-year-old adult still living with my parents. You have to understand that just because I’m in a wheelchair doesn’t mean I’m a child. I know you are scared because you love me, but please, let me at least try this. If it doesn’t work, I’ll move back home. I promise to come home every weekend. I don’t want my disabilities to stop me from living my life. I need your support on this.” I had programmed this into my device the night before to make sure I didn’t miss saying anything.

Mom and Dad look at each other. Finally, taking a deep breath, Dad says, “Let us go see the place first, Lily. Please give me time to think about it. This is very hard.”

It doesn’t matter how much he thinks about it. I’ve already made up my mind, so whether he likes it or not, I will be moving out. I don’t say that to him, though, because I know it’s not the right timing. Instead, I nod my head.

Although living on my own is scary at first, I’m proud of myself for facing my fears. Soon, I become accustomed to my life on my own. The staff is great, and they soon realize that I’m probably the smartest resident there. The other residents also get to know me pretty quickly and respect me for working full time and attending school at the same time.

Kathy comes to visit me a few times a week and so do my parents. Life is suddenly even busier for me. I travel to and from work with the transportation provided by the facility. The staff there also makes sure to bathe, toilet, and feed me. I train them well on my routine and exactly how I like things done. I’m glad that it’s usually the regular caretakers who come to help me.

Every weekend, as promised, I visit my parents. Every Friday evening, Dad is right in the front, waiting to pick me up. I don’t mind, though. I enjoy going home and sleeping in my bedroom. They also take me to my therapy sessions on the weekends. Keeping up with my therapy is imperative so the right muscles stay strong and the tight muscles stay loose.

Although the staff is nice at my new place, some things still bother me. There are other residents who also drive their power wheelchairs, but require supervision when they’re driving. Many times, I see their wheelchairs turned off, parked in front of the television in the common room for hours. I can’t even imagine sitting in front of the TV that long, without having the freedom to move about or a choice to not watch it any longer. They can’t communicate, so this is how their day passes most of the time.

Jen is the one resident who is parked in front of the television almost all day. She can’t talk or move her wheelchair, so she just sits there, staring at the screen. I find out that she used to be married, but her husband was abusive. One day, he beat her to a point of leaving her with a severe head injury. Since then, she’s basically been unresponsive and immobile.

Curious about her, I drive my wheelchair next to her and sit with her one evening after work.

“Big Bang Theory is on, huh? I like that show a lot. Do you?” I start a conversation to get a reaction out of her.

Jen ignores me.

I continue to talk with her with my device as if I’m talking to any other person. I make an effort to spend some time with her every evening, watching whatever she’s watching. She never really acknowledges me, except for one fateful day.

As I’m talking about nothing important, just to give her companionship, she suddenly reaches with her hand and touches my cheek. Shocked—because I’ve never seen her move any part of her body—I simply stare at her in awe. She flashes me a quick smile, takes her hand back, and resumes staring at the television once again.

Overcome with emotion, I remain frozen for a few moments. Realizing that it was her way of being grateful for being there for her, I turn my attention back to watching TV again, smiling silently. I take joy in knowing that I’ve made some sort of difference in Jen’s life.

Staying with others with disabilities also gives me another advantage. Everything I observe, I bring back to Professor Bailey. He’s basically my boss regarding the research on adapted technology. From any information I share, we try to invent a technology that would help not only the individual but also the caretakers.

I’ve been lucky. My assistive device that I use to communicate also controls the television in my room, accesses the internet, and can receive and send texts. Both, my power wheelchair and my communication device, have not only provided me with independence but have improved my quality of life significantly. I can’t even imagine my life without technology to help me.

Unfortunately, technology can sometimes fail. I find myself in a jam when one stormy day, I’m driving my wheelchair from one building to another at the college. The blizzard has me speeding up my wheelchair so I can reach my next destination quickly.

With no warning at all, the wheelchair stops. It completely shuts down on the sidewalk in this bitter, cold temperature.

Confused, I turn my wheelchair on and off. I know the battery has been charged all night, so I’m not sure why it’s not turning back on. I purposefully have my communication device covered in its case because I didn’t want it to get wet outside. Now, I regret that decision because I have no access to it and can’t even ask for help.

While I continue to play around with the wheelchair, I watch helplessly as the students fly by me. Don’t they wonder why I’m just sitting out here in the middle of a blizzard? Not one turns to me to see if I need help. After five minutes of turning the wheelchair on and off with no success, I contemplate whether I should start yelling to get people’s attention. My toes and fingers are freezing by now and the wind is really picking up. Everybody is scurrying about me, not even giving me a second glance. It feels like I’m going back to my childhood when nobody would stop by to talk to me in school. At first, I resist the urge to scream because I don’t want to cause a scene. As desperation sets in, though, I know I have no choice. Pretty soon, the passing period will be over, and nobody will be out here.

Just as I’m about to start yelling for attention, I suddenly hear, “Lily? Lily, what are you doing out here?”

I turn around to see my savior, Mark Stockton. A smile of relief spreads over me when I recognize my fellow colleague and friend.

I look down at the wheels to show him to change the wheelchair into the manual mode so he can push me. Knowing immediately that something is wrong with the wheelchair, Mark quickly starts playing with it. Unfortunately, he has no idea what to do, and when he attempts to push the wheelchair, it doesn’t budge. By now, I can’t even feel my fingers and toes, and I’m completely covered with snow.

“I have no idea how to work this thing. Lily, but you have to get inside. I’m going to carry you in, okay? I’ll send somebody for your wheelchair later.”

At this point, I’m desperate to be inside somewhere warm, so I don’t even resist. Mark quickly unstraps me and picks me up. Cradling me in his arms, he runs toward the building. I bury my face into his chest, hoping that I’ll eventually be able to feel my hands and feet.

Once inside, he takes me to the teacher’s lounge to avoid unnecessary attention. Placing me on the sofa, he swiftly pulls my gloves and shoes off. While rubbing my hands and feet, he calls Kathy to come immediately. He knows we’re good friends, and she would know what to do.

Kathy comes running and immediately falls next to me. “Oh my god, Lily! What the hell happened?”

“I saw her stuck outside. Her wheelchair wasn’t working. I left it outside and carried her in. I knew she needed to get somewhere warm,” Mark explains.

I can’t talk since I don’t have my communication device. At this point though, I’m so cold and shaking like crazy that I would fail miserably if I try to use my device.

“I’m calling 911. She may have frostbite or hypothermia. Do we even know how long she was out there?” Kathy asks.

Mark shakes his head, pulling me into his arms to stop my tremors.

Through the emotional ordeal, somehow, I make a mental note to tell Professor Bailey that there needs to be a backup battery for power wheelchairs.

By the time the paramedics arrive, I’m already back to myself, and Kathy has brought my wheelchair back inside. Luckily, my vitals are normal and my toes and fingers look good, so they don’t force me to go to the hospital.

Although the entire scene is quite embarrassing, I’m grateful to Mark for finding me. Once I’m in my wheelchair with my device on, I thank him properly.

“Wow, that was close. Thank you, Mark!”

“I’m just glad I happened to be there at that time. Hey, since I rescued you, does that make me a hero now?” Mark teases.

I look up to see his blue eyes twinkling and his dimples on both cheeks as he smiles. I’ve known Mark for the last couple of years, and we’ve always gotten along well. Mark appears to be in his early thirties, and I now notice how handsome he is with his blond hair, blue eyes, and those killer dimples.

“Well, you’re at least my hero,” I reply.

“I’ll take it!” We both laugh, partly because the scary ordeal is over and partly because we know that this is a start of a good friendship.

Once in a while, I still find myself checking on Chance’s Facebook page, just to make sure that he’s doing well. When I’m satisfied that he still looks healthy, I purposefully avoid looking him up again for a while.

In the meantime, my social life becomes busier. Besides spending time with Kathy, Mark and I also hang out together frequently. He takes me to the movies, and he even attends my therapy sessions occasionally. He says my life is very interesting to him. I love that Mark treats me like his equal. It may be because I’m his colleague at work, and we have mutual respect for one another.

Just when I feel that I have my life on a smooth road, suddenly, the road becomes bumpy with potholes. One evening, as I’m sitting with Jen watching one of her favorite shows, I notice her turning to look at me. At first, she simply stares and blinks several times. Then, she flashes me the tiniest smile and turns back toward the television.

I continue to stare at her, wondering what she was trying to communicate with me. Just then, her head falls to the side as if she has fainted. I try to shake her but when she doesn’t respond, I scream for help at the top of my lungs.

The staff comes running and immediately notices my distressed face staring at Jen. As soon as they see her not responding, they pull her out of her wheelchair. In horror, I watch helplessly as they start CPR on her.

“I can’t find a pulse,” somebody yells.

“Call 9-1-1!”

“She’s not breathing. Get the crash cart!”

What’s happening? God no, no! Please, Jen, fight!

“One, two, three, four…” Somebody has started the chest compressions.

“Get all of the residents out of here!”

I snap out of my trance and drive away from the nightmare unfolding before my eyes. I have to get out of here, desperately needing some space.

Driving my wheelchair outside, I text Mark. I have no idea what makes me contact him and not Kathy or my parents.

“Hey, can you come over? Something bad has happened here.”

Mark texts back immediately. “Are you okay? I’m on my way.”

Within fifteen minutes, he’s there and notices immediately that I’ve been crying. By now, the ambulance has already taken Jen away.

“What the hell! What’s wrong?” I know he’s shocked because he’s never seen me cry.

“Can we go up to my room?”

“Okay, let’s go.” Mark follows me behind my wheelchair.

Once in my room, he sees me visibly shaking. “You need to tell me what’s going on. What happened to you?”

“Jen, my friend from here. She stopped breathing. I think she’s dead. It happened right in front of me.”

“Oh, Lily. I’m so sorry. Shit! What can I do?”

I start to cry, unable to stop myself. I’m too upset to even use my device to talk to him more. Mark simply takes me out of my wheelchair and sits me on the sofa. He positions himself next to me and pulls me into his arms. Without saying a word, he allows me to sob into his shirt. Why is life so unfair? Jen’s life has been tragic and thinking about the possibility of her taking her last breath in front of me, hurts me to the core. Slowly, I drown in Mark’s arms.