Living Life Alive

this is about me and my struggle with cystic fibrosis

 

 

Living Life Alive

By: Jessica Allison

 

Chapter one

Captain

            As captain you are supposed to be a leader and an inspiration to the team. The team is your puppy and you must train it to conquer, endure and most of all, trust in your other teammates. When I was announced as the captain for the third time in my volleyball career, I was basically passed out on the floor, and my inhaler thrown to the floor beside me. We had just finished a tough practice outside in the scorching Arizona heat and I was exhausted. To show acknowledgement that I heard the coach name me as captain I simply raised my head off the floor and gave a small nod.

            I was drenched in sweat; I felt sticky and had horrid B.O. I looked at my arm and seen the tiny sparkling crystals of salt that formed. (It made me look even paler than I really am.) My teammates asked me about it last season. The simple curiosity by my teammates made me self-conscious. (So much for being a captain and leading the team.) I remember vividly the feeling of Kate running her finger over my bicep. It was crunchy and felt like burnt paper crumbling under the pressure. I shrugged at her and internally begged the heavens that she kept the disgusting texture she felt on my skin to herself, but of course being in high school…

            Soon the whole team knew about my weird skin texture and how I am covered from head to toe in salty sweat after every practice. It was not ideal but I decided that as captain I was obligated to explain myself, so I told my team about my Cystic Fibrosis. I told them what will happen to me as the disease progresses and I told them that my salty skin was just a side effect.

            I found out that day that teenage girls are annoyingly nosey. They wanted to know every detail about my life. After a few questions like “when are you gonna die?” and “do you take drugs?” I told them I wouldn’t die for a few decades (they don’t need to know exactly how quickly my illness can take over my body) and then I decided to end the press conference there.

            Having that memory pop up in my head sent a shiver of disgust down my spine. I just wanted to get in my truck and go home. I reluctantly pulled myself off of the floor. Feeling every muscle in my body scream from the hard workout and my head spin from dehydration. I felt broken, and I cursed my lemon body.

            I had just reached my truck when some teammates called for me. I turned plastering a fake grin on my face. Ashley H., Ashley K. and Johannah were laughing and smiling when they called out to me, genuinely congratulating me for being captain again. I thanked them and told them I would do my best to teach them all I know. Johannah (the tiny freshman) lit up like a new fake Christmas tree.

            Johannah became my little protochè. I worked with her during and after practice. Her form was horrible and her strength needed major improvement. She was definitely the clumsy little giraffe that just fell out her mother’s womb. At the end of the season she was head over heels better than she was before and she was grateful for the help and advice I had given her.

            I also had to teach Ashley K. how to set. She was a great volleyball player perfect form (except with spiking). She was my replacement, this was my senior year and I needed to name my successor. The setter is an important roll of the team because without the setter there would be no spikes. The setter uses the tips of her fingers (if she uses more then the ref will call carrying, which is extremely irritating and a difficult call to make for refs) to set the ball high in the air. Timing is essential for setters because it is based on the height and speed of the hitters (you have to know your team).  The setter needs to communicate with the team about where the ball is going and there is only a fraction of a second to do that. Ashley watched be the setter for three years. She has seen me chase ball after ball like a mad woman screaming “Mine! Or “Help!” Even though she has observed my behavior it was hard for her to be as aggressive as I was when communicating with the team.

            The last game of the season was the staff verses students game. In the warm up I was just laughing and having a good time going back and forth with Ashley K. Then I saw the coach of the Junior High team (Coach Teaters) was walking by. Perfect timing I thought to myself. The ball was gorgeously set 10 feet above my head. My body automatically started my spiking footwork and arm work. I jumped in the air, about a foot off of the ground. My arm came up sharply a movement that happened so fast the human eye can’t even follow it. My hand connected with the ball with a vicious snap. It sounded like I broke my hand. (I became immune to the pain of the ball spanking my hand long ago) I smiled at the coach (whom I admired abundantly which was why I spiked it at him) I wanted to impress him. I wanted him to be sad I am leaving high school. Most importantly I wanted him to remember me; not as the sick girl who was captain, but just as the girl who amazed him. I was taken aback at first when his face turned to anger. He asked me why I was a setter. “You should have been a hitter!” he was almost yelling at me. I acted nonchalant. I flipped my hair out of my face and smugly told him that I play all positions. He smiled at me and I could tell he would remember me for that last moment, that last spike.

            After the game Johannah told me the moment I inspired her most was during the game against James Madison at the Gilbert Rec Center. I remembered that game well. It was a tight game, one of the hardest teams in our conference. We were in the second match and I was up to serve. I heard the crowd yell my name as I walked to my serving position. Amongst them I heard “Go Jessie!” I rolled my eyes. (I hate that name. It is a boy’s name) I bounce the ball hard against the polished wood flooring. I feel the sting as it smacks my hand. I love the stinging sensation it sends through my body each time my hand connects with it. I do this before every serve. Three smacks is the magic number, it never fails me. If I complete this ritual perfectly before every serve it’ll be a great serve. After the final bounce I caught the ball and turned to face my opponents. I raised the ball with both hands to eye level. I look across the court to chose my prey when my eyes land on the setter for their team.

            “Perfect,” I thought to myself. I was the setter for my team it would be great to take out James Madison’s setter. So I aimed my hands toward her. I felt a second of pity for the poor girl she didn’t know what was coming. Then the whistle blew and that guilt left my mind. I did my footwork and my arms automatically moved (my nickname was robot because I was so automatic when I served.) I aimed with my hand and arm. I smacked the ball at its peak after I threw it in the air. It went flying right at the setter and as I predicted she dodged it like we were in grade school playing dodge ball. She hollered for her teammates to help her. Improvising was not this setter’s forte, which was now clear.

             She screamed and scurried to get out of the way. I sprinted on the court to get to my setting position. Because the ball was aimed right for the setter and she avoided the ball now her teammates had to dive to the ground to save it. Like it was a baby about to fall to the floor instead of just a volleyball. The site was comical as all the players ran into each other and fell to the ground. My teammates started cheering and screaming “Ace! Ace!” I knew better than to cheer before the ball hits the floor. I yelled harshly at my team “Not yet!” as I seen the ball in slow motion go toward the floor, a player on that team managed to get her fist between the floor and the ball. The ball bounced off her fist and the setter was back in the game because it was time for the second hit. She bumped it over the net to the back corner of the court.

            My team, (who was still cheering for a point we didn’t get yet, (it infuriated me.) was dumbfounded. I dove for the ball. I knew I was the only one who was in the right mind to hit it back over. “I have to hit it over I can’t set it up. We won’t be able to do it successfully.” As I told myself this I was diving to the floor and I quickly readjusted my position to make the ball go over the net instead of setting it for the hitter at the front.

            I bumped the ball backwards over my head. I hollered in pain as my back snapped. The ball just barely scaled the net and the other team was now enjoying a premature cheer, and during that cheer the ball finally hit the ground and everyone in the audience cheered my name. (Now it was time for me to deal with my team how dare they make such an obvious mistake) As I scolded the team and told them to get their heads in the game, they just looked at me like I was a ghost. Then I heard my coach yell my name. I was confused I didn’t know why he wanted me. He asked if I was okay. I rolled my eyes (I had forgotten about the pain in my back). I did a few quick backstretches to show him I was fine and went back to the game.

            As I came back from reminiscing about the game I realized my coach (Coach Gray was his name) he was handing out awards. He was now talking about the girl who won MVP. I thought he was talking about Demi. (She always won MVP, and I always envied her for it. I couldn’t stand it when she won) then he said, “Our MVP this year is Jessica.” My jaw dropped to the floor, my hands flew to my face to hide my tears of disbelief. I was so honored; finally after four years of fighting for every breath I was being recognized for it. I couldn’t believe what I heard. All I could say was thank you, over and over again. (In my head I was saying, “Take that Demi!”) 

 

Chapter 2

The Change in Heart

            Throughout my high school years I was plagued with many illnesses. It was difficult to manage my life around work, school, sports, and health. Dealing with all of this made me depressed. I was in therapy throughout my freshman year. Therapy was not the answer for me. I was very upset. When I sat in the therapist’s office I would cry until there was literally no tears left in me. Then one day I had an epiphany in her office. I had just stopped crying and I lifted my head slowly and mumbled, “I’m sick of crying.”

            “What do you mean?” the therapist was searching my soul once again. I hated that feeling. It was like she was raping my mind. Wanting to know every secret I had whether I wanted to tell her or not. 

            Using that anger I said louder “I’m sick of crying! I’m done, that’s it! I don’t want to come here any more and just wallow in self-pity. That’s not me, not who I am. I want to put the past behind me and move on.” Surprisingly she told me she understood how I felt and that I didn’t have to come to see her any more. Then she told me something I don’t remember hearing ever before, “it is your decision.” That microscopic sentence hit me like a meteor hitting the soft grass in Central Park. I realized I had the power to say no. So I did. I walked out of that office with a tear stained face for the last time and I never looked back. My mom was waiting for me in the lobby. She was no longer appalled by the look of obvious sadness and despair that was on my face. So she asked me how it was and I told her that I am not coming back here. My mom simply said “okay.” Later she asked me why and I explained what happened she too understood my feelings.

            I had a new power of decision-making and I was going to use it. I decided to change schools, be more active in sports and extra curricular activities, and I decided to be more outgoing. The biggest decision I made however was that I didn’t want to have Cystic Fibrosis anymore.

 

Chapter 3

 Dead by 40

            Most people fear death, but not me. I have come to terms with my mortality and I anxiously await the day that I am set free from this cursed body that I was placed in. My friends hate when I talk like this.

            “You don’t know you are going to die!” they tell me. I just laugh at them. Obviously that doesn’t make sense. I often think my friends are foolish for saying such a thing. Everyone dies; therefore it is safe to assume I will die as well. The real question for everyone is when.

            I have Cystic Fibrosis; CF is a genetic condition that slowly but surely clogs my organs with mucus until they can no longer function properly. I am not writing an informative article about CF so if you want to know more about the disease you can look it up on Google or something. This is about my feelings on death.

            Ever since I was little I was told with cheery optimism, (which I find extremely annoying) “you can live a long and normal life!” which is true, well half true. It can be true based on what a person’s definition of “normal” and “long” is. Some people live to be a hundred but they still say it’s too short. (They should be grateful for the time they have instead of complaining.) Some people may think going to the hospital more than you go to your grandparent’s house is normal. My definition of normal is different. My definition of normal includes living life to the fullest, and having fun.

            When I was a baby my life was a constant fight to stay alive. When I was an elementary student my life was about school and learning the proper way of taking my medications. When I was in high school my life was about school. When I turned 16 I lost my desire to take care of myself. I stopped taking medicines and I stopped taking treatments. (Even when I took my medications I still got sick, so what is the point? I won’t be the doctor’s lab rat.) Obviously my parents reprimanded me for this. Even with all the punishments they dished out, I still refused, and they remain to this day forever confused.

            Today I am 19. I still don’t take my medicine however I am taking treatments more often. Not as often as I should but it’s an improvement. The only reason I take my treatments now is to improve my quality of life right now. If I just ignored my CF, I wouldn’t be able to go to school or have fun the way I do. I learned that the hard way. Recently I got very sick my pulmonary functions were down into the 40’s (I am usually at 102). A pulmonary function test is basically blowing into a tube and the computer calculates the strength of your blow. When my lungs were in the 40’s I was pretty much bed ridden and I couldn’t get up because I would be out of breath as soon as I stood up. The doctor’s said I need to go to the hospital, but as usual I told them to shove it. When I got home I decided this was not the way to live. It conflicted with my live life while I can theory. So I decided to do better on my treatments. The medicine helped a little. My lungs are still not as healthy as they were before I got sick. I knew this would happen one day though. So it doesn’t surprise me.

            Now that I am better I have stopped taking them again which isn’t good but I mean come on. Who has time for an hour of treatments everyday? Not this college student. So the feud between my mother and I has resumed. She begs, bribes, or bargains with me. Anything to get me connected to those damned machines. (I know she does it because she cares about me and wants me healthy but I can’t give her what she wants so I gave up a long time ago.)

            So today I still face the same issues day after day but I keep my head held high and move forward. I am being smarter about my medical issues and I have informed the people I trust what I want if something were to happen to me. I told them I don’t want transplants or any other major surgery, even if it will save my life. Why delay the inevitable especially if it only prolongs my life a few months? Why would I take a lung or liver when someone else is out there has a chance at prolonging their life by decades? I could not live with myself if I did that. I promised my loved ones that I am not suicidal. I am just going to live my life the way I want to live it. I refuse to live it connected to machines or tubes. I am living my life in the moment. Having as many life experiences as I can. I am the captain, inspiration and leader of my own life. I don’t see anything wrong with that.