My Perfect Imperfections (9 page)

Later that night, Mom says, “So, how did it go?”

I know she’s talking about Layna. “It felt good to go there…and to let her go,” I reply.

“I’m proud of you, honey.” Mom smiles, but I notice her eyes sparkling with tears.

Dad says, “You’ve been spending a lot of time with Chance. I like him and all, but what’s going on with you guys?”

Leave it to Dad to be direct.

“We’re just friends.” I shrug my shoulders, hoping he will drop the subject. Truth is, I have avoided thinking about my feelings toward Chance.

“Yes, we see you guys are becoming very close. We just don’t want you to get hurt, honey,” Mom chimes in.

“Everybody gets hurt,” I reply. I can’t hide forever in a sheltered life for fear of being hurt. I now realize that my parents and Layna have protected me my entire life. I have to grow up at some point and face the world—the good and the bad.

“Okay, Lily, fair enough. But, if he even thinks about hurting you, I swear he’ll have to deal with me.” I guess some habits die hard. Dad will always remain protective of me.

During my last year in college, Chance and I spend almost every day together. If we don’t see each other, we text and catch up on our day. I don’t hold anything back from him anymore. Completely trusting him, I allow myself to be me without focusing on my disabilities.

One evening, Chance comes over and we watch a movie in my room. While I watch it from my wheelchair, he lounges on the recliner, drinking his Coke. As he’s about to take another sip, suddenly the glass slips out of his hand.

“Shit! Damn it!” He opens and closes his hand quickly, as if testing it.

“What happened?” I ask.

Still shaken up, Chance remains silent.

“It’s no big deal. It can be cleaned up,” I try to assure him since he seems very distraught.

Chance shakes his head, as if trying to focus.

“What’s wrong, Chance? Why are you so upset?”

He continues to ignore me but mumbles, “I’ll clean it up.”

Once everything is clean, he sits back down in the recliner. I can see the distressed look still in his eyes, which worries me. He has never acted like this.

“Is there something you want to talk about, Chance? Why are you upset about dropping the glass?”

“Nah, it’s all good. Listen, Lily, I’m really tired tonight. I think I’m going to head out and call it a night.”

Without saying another word—without even glancing my way—Chance rushes out of my room.

The incident isn’t brought up again until the next time something happens. A few months later, Chance and I are walking by the lake. As I’m driving my wheelchair, Chance is being his usual self, running to the lake and throwing pebbles to make them bounce in the water. He runs back to me after the toss and says, “Did you see that? I swear I made it bounce four times. I’m becoming a professional at this!”

“Maybe you should compete professionally.” I can’t help but tease him.

“Yeah! Maybe I can be the champion of making my pebbles bounce the most! My name can be listed in the Guinness Book of Records!”

We both laugh, enjoying the spring weather.

“It’s all about picking the right pebble and twisting that wrist just the perfect way. Here! Watch this!” Chance runs back to the lake and tosses another pebble. This one bounces three times. “See that?”

In his excitement, he turns toward me and starts sprinting back. As soon as he takes a few steps, though, his legs give out from under him. In a split second, Chance has fallen down to his knees. As if shocked himself, he lowers himself down all the way and sits on the grass. He places his head in his hands, trying to get his bearings.

“Are you okay? What happened? Did you trip?” I wouldn’t normally worry about a trip, but his reaction to it has me terrified. He simply sits there and stares at the sky in distress without saying a word.

“Talk to me, Chance. Are you hurt?” Since he hasn’t answered me, I contemplate calling for help. Why is he behaving this way? His knees literally just buckled. Maybe it was the way he turned quickly. Wishing that I can get off this stupid wheelchair and check on him myself, I finally say, “I’m calling for help.”

As if that brings him back to the present, Chance turns his attention toward me. He then moves his legs up and down, testing them. When satisfied, he slowly tries to stand up, making sure his legs can support him. Taking one guarded step at a time, he cautiously approaches me.

“I’m okay. Let’s go by that bench for a bit,” Chance says, his voice thick with distress.

I follow him, knowing something is dreadfully wrong.

Once sitting, he takes some deep breaths, staring out into the distance. I don’t dare say a word, knowing he needs some time to fight whatever battles he’s fighting.

Without looking at me, he says, “My father died of ALS when I was 21. My mom killed herself a year later.”

I shut my eyes, hoping I heard him wrong.

“He died a horrible death. My mom and I watched him helplessly as he slowly deteriorated. He used to be a powerful man. He was a Lieutenant in the U.S. Army, so it was very hard psychologically for him to accept what was happening to him. Mom and I took care of him—helped him with everything. He hated it. He would beg us to end it for him. He would even point to his gun when he was nearing the end.”

I hold my breath, not wanting to interrupt him.

Chance sighs, rubbing his face. “Of course, we never did. We hated what was happening to him, but how could Mom and I just end his life? No matter how much he begged, we let him suffer. He died slowly and painfully.”

He turns to me and reaches for my hand. I put my other hand on top of his, encouraging him to continue.

“We didn’t have the guts to do it, Lily. After he died, Mom went into depression. She couldn’t deal with the guilt and couldn’t let go of what her strong, powerful husband went through at the end. She started worrying about me, confessing that ALS ran on my dad’s side. Although familial ALS is not common, the risks for me were much higher suddenly. She insisted that I go through the genetic testing for it. I was young and confused. I wasn’t sure whether I wanted to know or not. I finally gave in because I knew she needed to know.”

Chance pulls his hand away and brushes it through his hair. I watch helplessly at his trembling hands, and he once again stares off into the distance.

“They found that gene, Lily. I have that mutated gene that runs in my family.” He clears his throat. “I had to tell my mom. She was devastated…so much that she couldn’t get past it. I have no idea what made her do it. I don’t know if she didn’t want to watch me suffer, or she didn’t want to go through it all again. Either way, she did to herself what she couldn’t do to her husband. I had just started medical school at that time. I came home one evening to find her body. She had shot herself with my father’s gun.”

No matter how hard I try to stay strong, the tears stream down my face. It’s breaking my heart, shocked at what I’m hearing.

“I was lost. I had no idea what was happening around me. I dropped out of medical school. Soon, I sold the house and just left. I literally got in my car and drove away. Away from the horrible memories, away from the pain. I just said goodbye to that life. Somehow, I ended up here in Michigan. I have no idea what brought me here. I got an apartment and enrolled in nursing school. My parents had a good amount of money that helped me through school. Once I started working, I decided I wasn’t going to give up on my dreams of being a neurologist. I didn’t have any ALS symptoms, so I decided to never think about my past again and look ahead toward my goals. Why not? After all, I felt healthy as a horse.

“So, I started taking classes at the college and immediately, I noticed you. Maybe I was drawn to you initially because I admired you. Maybe I wanted to get to know to you because of my past…or even my future. I noticed how beautiful you were, but your eyes were always sad. I don’t know, Lily. I made up my mind that I had to know you. I wanted to know your story. I just didn’t expect to get this close to you.”

Finally, I ask, “Why didn’t you ever tell me?”

“I have never talked about my past to anybody. I don’t want to. And, I never will bring it up again. I didn’t even want to bring up this whole ALS thing with you. I certainly don’t think about it. I’m going to continue living my life, you know?”

I don’t say anything simply because I have no idea what to say. I can’t even wrap my brain around all this information.

“First time, I kind of freaked out was when I dropped that glass in your room. Then right now, when my knees just buckled from under me, I was shaken up. Both times, though, I’ve recovered quickly. I feel like myself again.”

“Are you seeing an ALS specialist?”

“No, nor do I want to. Just not ready for that bullshit in my life right now.”

Has he lost his mind? He should be getting some sort of treatment, or at the very least, he should be monitored closely.

“Listen, Lily. I know I’ve bombarded you with a lot of information right now, but I might as well tell you everything.” Chance takes a deep breath. “I’ve been accepted to Johns Hopkins Medical School. They have one of the top neurology programs in the nation. I think this is my calling. No, scratch that—I
know
this is my calling. I want to be involved with research. Hey, you never know, maybe I’ll even discover something amazing that can help people like you and me.” Chance chuckles under his breath.

In the meantime, I try to process this new information he has just thrown at me. What exactly is he saying? Is he leaving?

“I have accepted, Lily. I’ll leave at the end of the summer.”

My heart already has broken today from the news of his ALS. Can it break again when there’s nothing left to break? Maybe this is not real. Maybe this is just a horrible nightmare.

I look around me, trying to remember when I had fallen asleep in my room and started having this dream. Maybe if I give it some time, I’ll wake up. I close my eyes, soaking in everything around me. I can hear the birds singing, the rustling of the leaves from the soft wind, and even the scurrying of a squirrel that must be nearby. Grinding my teeth, I pry my eyes open, hoping to be back in my room. I swallow the lump in my throat when I see Chance staring at me intently, waiting for me to say something.

“I’d like to go home now.” I don’t know what else to say. Maybe I shouldn’t leave Chance alone. After all, he has just poured his heart out to me about the horrific tragedies in his life. Yet, I don’t want to be near him at the moment. I can’t get hold of my emotions, still in shock with all that he has shared with me.

Chance inhales a shaky breath. Without saying anything further, he walks toward the parking lot.

As I lie in my bed at night, I think about the last year and a half. Chance—one of the strongest people I know—has the mutated gene for ALS. Does that mean he’ll get ALS? Or will he be spared? How fast will this disease progress? The thought of him bound to a wheelchair, unable to take care of himself, breaks my heart. Not him, please God, not him.

When I remember the tragic ordeal about his parents, a tremor runs up and down my spine. Visualizing Chance helping to take care of his father all those years and then finding his mom’s body shatters me into pieces. I can’t imagine the emotional trauma that he has held inside him all these years.

And he’s leaving. He’s packing his bags and riding off into the sunset. How can I possibly look out for him? How can he just leave like that? Am I being selfish? He said he needs to do this. I’m not surprised that he has been accepted into Johns Hopkins. The man is brilliant. Why shouldn’t he pursue his dreams? He owes me nothing. Nothing at all.

Unable to fall asleep, I get up out of my bed and into my wheelchair to research ALS. Although I know it’s a progressive disease, I don’t know much more than that.

Two hours later, I’m even more depressed. There is no cure. The damn disease affects the motor function. If Chance gets diagnosed with ALS, he will become weaker and weaker until he is completely wheelchair bound and eventually confined to bed. He will be paralyzed and will require total care in everything. Even his muscles for eating will stop working, and he’ll require a g-tube. Eventually, his respiratory muscles will fail, and he will have difficulty with simply breathing. I bite my lower lip hard, drawing blood, as I envision Chance in that position. God, please let there be a mistake. Why him?

Thinking about life expectancy with people with ALS has my entire body trembling. Most people die within two to five years from the time of the diagnosis. There are very small percentages of people who do live over twenty years after diagnosis. Although there is no cure, there are some medications that can slow down the progressions of ALS. Should he be taking these?

Tomorrow, we don’t see each other at the college, but he normally stops by in the evenings. Right now, I can’t worry about him leaving. I have to first focus my attention on making sure he’s receiving all the help he needs for ALS. I plan on confronting him tomorrow when he comes over.

The next day comes and goes. Not only does Chance not come over in the evening, but he doesn’t even text. This is the first time I haven’t heard from him all day in over a year. Should I be worrying about him? Is he okay?

I debate texting him myself to check on him. Convinced that I’m being paranoid, I decide to wait until the following day when I’ll be seeing him at the college.

To my disappointment, Chance doesn’t meet me at our usual spot the next day. Worried sick about him, I take deep breaths to try to think rationally. As my anxiety increases, I weigh out my options. Did he attend his classes today?

I decide to drive toward his next class to see if I can find out if he’s even here. As soon as I turn the corner, I see him immediately. He’s standing with a crowd of students, laughing and talking. Not surprised that he has captured the crowd with his charismatic personality, Chance appears to be everybody’s center of attention.

Having no desire to go near that crowd, I quickly turn my wheelchair around and drive away. I guess I’ve been worried for no reason because Chance seems absolutely fine. Not only is he fine, he seems to be having a good old time with his friends.

Confused at why he hasn’t made any effort to see me, I drive to my next class. I purposefully push any thoughts of Chance away because, at this point, nothing makes any sense.

That night, I wait anxiously for him to either stop by or text me. I stare at my device, willing it to beep as it does when I receive a text. I should text him and just find out what’s going on with him. I just can’t seem to do it, though. I wouldn’t even know what to say.

Maybe he thinks spending time with me now is useless since he’ll be leaving in a few months anyway. Summer break is almost here, after all. Maybe this is how Chance works. When he’s done, he’s done. After all, he did just pack up and leave his hometown.

Trying to think rationally, I convince myself that perhaps he simply needs a couple of days to himself. Maybe actually talking about everything has freaked him out. He said he had never shared any of it with anybody. Now that I know, it probably makes it all too real for him. Yes, that must be it. He just needs a few days to himself to sort it all out.

The few days become an entire week. Chance continues to avoid me. As a matter of fact, I’ve noticed that he purposefully takes different routes to evade me at school. Frustrated, I can’t take it anymore.

On Tuesday the following week, I wait by his car in the parking lot at the time I know he leaves. Sitting in my wheelchair with my chin up and my lips set in a firm line, I’m determined to confront him.

When Chance sees me as he approaches his car, he stops in his tracks. Gathering his composure quickly, he starts walking toward me again until he stops right in front of me.

I look up directly into his eyes, trying to read him. His eyes are guarded, though, and I have no idea what he’s thinking.

“Are you serious? You’re going to just pretend that we haven’t been friends for the last year and a half? Like we don’t even know each other? Sorry, buddy, but you don’t get off that easily. You owe me an explanation, and it better be a good one. I’ve shared some of my deepest secrets with you. You’ve been my best friend, and I finally permitted myself to trust you. You don’t just get to walk away when you’re done. That’s not how life works, Chance!”

After staring at me for a few seconds, he says, “You had a lot to say there, Lily. Did you program all that in your device ahead of time?”

I can’t help but smile. “Yes, last night.”

Chance laughs. “Oh, how I’ve missed you, Lily. I purposefully stayed away because I just thought that’s what you wanted. After I told you everything, you looked so upset. I wouldn’t blame you one bit. I know it was a lot, and I refuse to bring my burden to you.”

“Of course, it was a lot! But can I get a minute to think before you jump to conclusions?” I respond.

“You didn’t even text me. You could have just contacted me. When I didn’t hear from you, I knew I had to do the right thing and stay away from you.” Chance kneels in front of me.

“You’re a fool.”

“Yes, I am.” Chance leans toward me and kisses my cheek. “I’ve been miserable this past week without talking to you. Look at us; we’re a mess.”

“Speak for yourself. I’m not a mess. I know exactly who I am and what I want.”

Chance smiles. “I guess I’m the messed up one. Can’t argue with that. You’ve always been the stronger one between us.”

I wouldn’t have agreed to that statement a week ago. Now that I know this new information about him, though, I see that Chance needs more help than he even realizes. He’s not the strong, secure guy that I had thought all this time. He’s lost, confused, and hides from all his problems. The happy-go-lucky Chance that I’ve gotten to know has been merely a facade. Chance is not ready to deal with his past or his future.

It’s like old times again for the rest of the school year. Chance and I are inseparable. I realize that when Chance can’t deal with something, he likes to ignore it. I’ve learned through the years that this doesn’t work. The best way to deal with something is to face it. It simply won’t go away by avoiding it.

While Chance and I are hanging out on my back porch one day, I say, “I know what I want for a graduation present from you.”

“What? I’m broke! What makes you think I was going to give you graduation gift?” Chance teases.

“Shut up. I only want one thing. Are you listening?” I ask, determined to make him focus.

“Yes, Miss Cooper. I’m all ears.”

“I want you to make an appointment with an ALS specialist. I want you to be followed closely from now on. Even when you’re away at medical school and I can’t check on you, I want you to remember. Do it for me. That’s all I want.”

Chance looks away, staring at the backyard like it’s the best view in the world.

“Please, Chance. It’s important. Please do it for me. Promise me.”

When Chance turns toward me, he sees the tears that have gathered in my eyes. Before I can stop myself, a single tear sneaks out. Chance reaches with his fingers and softly caresses it away.

“Don’t, Lily. I can’t bear it. And okay, I promise. I’ll do it for you.” Chance kisses my cheek.

“Make an appointment as soon as possible.”

“Okay! Aren’t you demanding! Anything else?” Chance laughs.

“That’s all. Thank you.” Okay, I won this battle. It’s a start.