Life Beyond the Walls: Living with Cystic Fibrosis

Introduction

Death: often the most horrifying and crushing concept in the world, but a harsh reality for me. Each day, the face of death stares me down with its darting eyes and menacing grin. When I look in the mirror and see the dark circles under my eyes, the sharp outline of my ribs and collar bones, the devastating scars from various surgeries and procedures, the awkward protrusion in my upper chest where my port has been placed, peeling palms and chapped lips, and pale, sickly skin, I see death. Not only do I SEE death, but I feel it through short, gasping breaths often followed by a faint wheeze, chills caused by frequent fevers, delirium due to extreme fatigue, and overall disinterest, through no fault of my own. Nothing about my outer appearance indicates life. In fact, it screams death. I discovered this reality at a very young age when I was diagnosed with the chronic, genetic disease known as Cystic Fibrosis.

One could describe this hilariously ironic disease as a type of progressing domino effect, where each little downfall causes the next, but to an even higher degree. From the maintenance of a healthy weight to the coughing fits that lead to vomiting, each ailment tends to lead to another and then comes right back around in the same cycle. Constant betrayal by your own body could arguably be considered the definition of hell, but even with all things considered, life, for me, remains manageable due to one simple choice that affected my entire world: in the midst of death, I chose life.

Taking My Breath Away

Cystic Fibrosis has been generally known as a childhood illness for the majority of its known existence, but for me, it has been defined as something entirely different. I remained relatively healthy throughout my early childhood, only needing to be hospitalized about once a year. My parents were determined to introduce me to a “CF regimen” at a young age and keep me loyal to it. After waking up each morning, I ate breakfast and did my breathing treatments along with my Vest before I was ever able to go outside and play with my friends, but despite those additional responsibilities, I was never miserable. Treatment was simply routine, and I was used to it. Having a healthy mindset at such a young age allowed me to feel like less of an outcast and more like a “normal kid.” I ran and jumped and played just like any other child would, and I was happy. I was one of the lucky ones. This illness did not rob me of my childhood because my parents, grandparents, and I did not allow it to, and that sense of normalcy is more than anything I could have asked for as a little girl. My mother always told me that everyone has something. Everyone is given some sort of baggage in life that they are expected to cope with, and CF just happened to be mine.

I remember it like it was yesterday: the day that my illness took my breath away. Usually when a teenage girl speaks of her breath being taken away, she is thinking of a cute boy who swooned her at school or an incredible view on a once-in-a-lifetime vacation, but this was different. I woke up on the early Monday morning of November 1, 2010; just six days before my fourteenth birthday. I sat up in my bed, ready to take on the new day, and I yawned. I knew immediately that something was wrong. I expanded my chest to its full capacity and realized quickly that my lungs simply were not expanding the way they did the day before. I was afraid. As I hopped out of bed and onto the cold, tile floor, I grabbed every respiratory treatment I could find and got to work. I sat through what felt like hours of simple airway clearance as the vibrations of my Vest singed my skin and shook my lungs and the salt of my Sodium Chloride treatment coated my throat. I coughed and coughed until I gagged, and despite my best efforts, nothing seemed to help. I had never truly experienced the inability to breathe before, and the feeling sent me into complete and utter shock. I sat on the floor of my tiny bedroom in total dismay, trying to understand what was happening to my body, and then it hit me.

I had taken my last deep breath on October 31, 2010.

From that moment on, Cystic Fibrosis became more than just a chronic illness for me; it became a constant battle. From the wrinkling and sloughing of my hands to the sensitivity caused by my geographic tongue, Cystic Fibrosis was suddenly affecting areas of my life that I never thought possible. Coughing and wheezing were no longer the sole culprits associated with this illness. And to make things just a little more interesting, why not add one more child with Cystic Fibrosis to the mix?

Having not one, but two children with Cystic Fibrosis came with a lot of hardship for my parents and grandparents, who always managed to act as a second set of parents to my brother and me. Take all the treatments, medication costs, hospital bills, time off of work during hospital stays, high calorie diets, stress, and consulting and double it. My parents were suddenly dealing with more than any parent should ever have to deal with- an early life expectancy for both of their two children. Cystic Fibrosis affected my brother, Brannon, and I in very different ways, however. While I seemed to be fighting a constant battle with my lungs, Brannon was born with Cirrhosis of the liver, which is basically a slowly progressing disease in which healthy liver tissue is replaced with scar tissue, preventing it from functioning properly. So, while we were both battling CF, the problems that we faced throughout our childhood were entirely different.

Fighting Back

As I entered into high-school, Cystic Fibrosis became less of a physical battle as it was a mental one. I went to school each day, ready and motivated to be just like everyone else. I desired to excel socially, academically, in sports, and in leadership, and looking back, I can certainly say I gave it my all. The problem with that, however, is my all was never enough. I was never able to go into a task with the same amount of energy and drive as everyone else; my body simply did not allow it. While my peers were able to jump into any activity with full energy, half of my energy was being used simply to keep my lungs breathing and my heart beating while simultaneously trying to fight off any infection I had at the time. I did not want to accept that, though, and I became angry. I was angry that I could not manage what everyone else seemed to ever so effortlessly accomplish on a daily basis. I was angry that I frequently had to step out of the room during class because of my unceasing cough followed by concerned stares from my peers. I was angry that I was often forced to cancel my weekend plans with my friends due to lung infections. I was simply angry, and rather than transferring that anger into a drive to fight my illness, I rejected it as a whole.

While I wish I could say that I was able to change my outlook in a timely manner, like most rebellious teenage spirits, I had to be knocked down in order to realize that I was the only one who had the power to pick myself up again. As a teenage high-school student, my focus and concern did not lie in the hands of the chronic illness that was slowly taking over my body. My concerns, at the time, included moments with my friends, my school work, college plans, volunteer activities, and family time. I simply decided that I had no room for Cystic Fibrosis in my life. I managed to convince myself that I was just too busy. The funny thing about CF, though, is that it has a nice way of reminding you that you can never be too busy for it. One day while sitting in my Genetics class listening to a lecture about genotypes and phenotypes using fruit flies, I noticed a sudden sensation that I had never experienced before. It felt as if I was drowning from the inside out. As I ran to the bathroom and leaned over the white porcelain sink, I watched as it began to fill with bright red blood while I coughed. My heart raced and tears followed. That is all it took. From that moment on, I knew that I needed to make some changes. Cystic Fibrosis could no longer take the back seat to any other aspect of my life. It was time to make CF my number one priority.

By the time I graduated high-school, Cystic Fibrosis maintenance and treatment became my first priority. I spent hours and hours each day performing airway clearance therapy and treatment, exercising, and taking in high-calorie meals simply in attempt to maintain my overall health. I suddenly began to notice a complete change in my health and energy level as a whole. I was able to do all those things I always complained about not being able to do- I spent more time with my friends, I found it easier to perform during exercise, and I even had more time in my schedule to take on an outside job and begin making my own money. During my freshman year of college, I moved out of my house and into a dorm with my roommate, took classes, attended workshops and parties, and studied just like any other college student would. And while I had my occasional bumps in the road that required hospitalization, I found myself able to bounce back from lung infections much quicker than ever before. I had finally made it. I was finally happy, and I felt normal. While the bumps in the road were inevitable, my fight was stronger than every obstacle thrown my way.

Many people believe that Cystic Fibrosis is simply a physical battle that one must conquer to remain happy and healthy, but I would have to disagree. Conquering this illness on a daily basis takes more brain power than anything I have ever had to face. With the right attitude and mindset, however, fighting CF becomes easier and much more manageable. It has been said that pain is inevitable, but suffering is a choice, and throughout my life, my struggle with Cystic Fibrosis has proven this statement to be true.

A Day in the Life

While life did become much more manageable once I dedicated myself to staying healthy, Cystic Fibrosis never disappeared. Sitting upright in my tiny, stiff hospital bed, I glance around the room at the many sights and sounds that surround me. From the slow drip of my IV to the faint sounds of television reruns and birds chirping outside of my window, I feel life begin to slowly slip through my fingers. I feel so removed. That feeling of complete and total isolation must arguably be the most difficult aspect that comes with any prolonged hospital stay. I watch my friends continue to go to school, play sports and live their lives while mine seems only to be standing still, and I have found myself, in multiple different instances, wondering whether or not all of this is really fair. Maintaining a positive attitude while isolated in a hospital room, while difficult, is manageable, however, due to the simple motivation to fight.

Waking up each morning unaware of how your body is going to decide to operate that day may easily be the most frustrating and disappointing feeling imaginable. That constant sense of betrayal by your own body manages to bring with it an uncontrollable sense of failure, as if there is nothing you can do to turn your life around. I have found, though, through many years of coping with this disease, that the most vital aspect of managing the stress and hopelessness of any chronic illness is a positive mind.

“…the most vital aspect to managing the stress and hopelessness of this disease is a positive mind.”

Each day, I wake up ready to face whatever challenges may be thrown my way, whether it be exceptionally difficult school work, new projects at the workplace, or even simply the ability to keep my lungs functioning the way that they should. This positive attitude and willingness to fight has allowed me to overcome many of life’s obstacles thus far.

Throughout my life, doctors regularly told me that I could expect for each day to be a battle that I would have to overcome, and over time, I have found that they were undoubtedly correct. This disease, though, in turn, has brought me so much more than any doctor could have ever predicted. With Cystic Fibrosis not only comes persistent coughing, soreness and fatigue, but a sense of accomplishment and a better appreciation for life as a whole. Through my involvement with the Cystic Fibrosis Foundation, I have been given the incredible opportunity to meet and get to know so many extraordinary people who dedicate so much time to the cause, and I was able to build my own self-confidence through them. Before long, I found myself speaking in front of crowds and sharing my story at fundraisers and events in efforts to assist those who also struggle with this illness.  I have always described Cystic Fibrosis to be my biggest blessing and my biggest curse, because while it manages to knock me down to my breaking point, that sense of accomplishment and dedication to living a healthy life picks me up again. For that, I will be forever grateful.

Strangers who do not know me may quickly glance at my pale, sickly appearance, hear my cough comparable to that of a smoker of thirty years, and immediately feel sorry for me. I can honestly say, though, that a day has yet to come when I have woken up feeling sorry for myself. I whole-heartedly believe that life is a gift and a privilege, and the fact that I was lucky enough to be chosen to experience all the amazing blessings that this life has to offer is truly the greatest blessing in itself. I have learned, throughout the course of my illness, that even when facing the horrors of this world, it is important to find beauty in the little things: the warmth of the rays of the sun that reflect off of the coast where I am more than blessed to live, the beautifully satisfying feeling of piano keys clicking beneath my fingers, perfect harmonies in a song, the touch of the tiny hand of my three-year-old brother wrapped around my finger, the sound of my seventeen-year-old brother’s witty sense of humor followed by a contagious laugh, the feeling of my puppy cuddled up next to me in bed, the sound of the voice of my best friend during our seemingly endless FaceTime sessions, the refreshing feeling of warm water hitting my tired skin following rigorous exercise, the sweet taste of local honey, the crispy first bite of a Butterfinger bar, and the smell of the rain. The simplest of things, although small, have brought me a lifetime’s worth of happiness within a short twenty years. I have always admired the quote,

“find what makes you happy, and let it kill you,”

because while death is inevitable, life is a choice. Even in the face of death, there is life; the only key is finding it where you would least expect it.

 

-Lexi Naughton

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8 thoughts on “Life Beyond the Walls: Living with Cystic Fibrosis

  1. What an inspiration you are to us all Lexi. I choose life with you and for you. May God bless you with something new today to rejoice in as well as bless you with a memory of something good and beautiful. Praying you see beauty in life today Lexie!

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    1. Lexi thank you for the sharing, honesty and faith in openly expressing your feelings on your life journey. It will not only help other troubled children but their families also. I truly believe the SHARING DOES MATTER!!

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  2. Lexi,
    My eyes are filled with tears of awe at your strength, determination, and beautiful spirit. You are such an extraordinary young woman. While your daily struggle must feel incredibly lonely and isolating, your dogged resolve to show up each and every day for your life in the world is having more of an impact than you could possibly imagine. You are so strong and what must feel like your daily grind is so far beyond what most us complain about. What I am trying to say is that while not everyone may acknowledge it, your fortitude is a powerful inspiration to everybody around you. And I am so grateful that you posted this so that I may share it with others. Like Tonya said, “everybody has something…” And for each of us, that something is very real. Some of us succumb to the darkness of helplessness because we accept that everything is out our our control and to keep trying is just too hard. But not you, Lexi. You have the mindset of a champion. You prove to the world that we can live with our challenges and love our lives at the same time. You make me want to be better. To try harder, to live and love and laugh and appreciate more. Thank you.
    So much love,
    Kim Wimmer

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  3. Thanks for sharing your very personal story. One evening I drove a carload of McGill students to visit you in the hospital. I still remember your scream of surprise when they crashed your room. Those kids think your pretty darn special and they are right.

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  4. Hello Lexi,
    I didn’t know about your posting of this story until I found it while I was reading about your Mom on a Linked In posting of her’s. You are unbelievable! I have never read anything so beautifully written. The night I had dinner with you and Brannon and your family I knew immediately that you were very special. You have been in my prayers everyday since then. I feel really bad that we haven’t returned to Mobile since that night, but I’m determined to return soon with the main purpose being to see you again. You have already changed my life and and I am a better person because of it. Please give all your family my love and tell them I look forward to seeing all of them.
    With lots of love,

    Billy’s Dad

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