Unveiled
An Unexpected Life
by
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Over the next several months, I found great comfort and trust in my nurse from Loyola. She was one of the sweetest nurses I know. She stands about 5’4” with light, thin and curly, short hair with glasses that her tiny nose holds up to her blue eyes, and pale skin and a wonderful, welcoming smile. I would make her laugh at some of the comments I made, and I laughed a lot at myself, but she never laughed at me. Even with questions, I had to have her dummy it down for me. She always answered my questions thoroughly. She invited me to the annual CF Awareness Day in November 1994. I decided that it might be a good idea for me to see what it was all about. I thought it would answer a lot of my questions. Jim and I reserved our seats, and when the day arrived, we took a ride downtown to listen. It took place in a gym, and seven teenagers, male and female, were on a panel. There were several round tables in the gym so the attendees could talk among themselves. Lunch was served as we listened to each teen tell his or her story about living with CF. Some even had diabetes, like me. As I sat in the audience, I thought, I don’t belong here. I don’t belong here with all these ‘sick’ people. I didn’t look or feel the way that each of the teenagers described their experiences. They were explaining the disease as it fit them. They explained how the disease affected their lifestyles and how they dealt with schoolwork, being in the hospital, how they couldn’t walk, run, or play like a normal kid.
One guy said he had CF, so he didn’t do this or that, and he even said that he goes to the hospital for a two-week stay every six months to get a “tune-up.” What’s a tune-up? I thought to myself. (Please see appendix C. A “tune-up” is a cute name to describe a PICC line, which is a type of treatment.) I thought they were so negative about the disease; it almost sounded like they used it as a crutch not to live, exactly what my parents explained they didn’t want me to do. I realized then and there why my parents did what they did. They raised me to believe that I had a life to live. And they made sure I was going to live it as normally as possible. But what is normal anyway? As the teenagers on the panel continued to speak about their excuses, I began to feel sick to my stomach, and my head began spinning. I couldn’t believe what I was hearing. I remember thinking to myself; I cannot believe you are feeling so sorry for yourselves because of a cough. I felt uncomfortable being in the audience. I had heard enough self-pity for one day. I couldn’t listen anymore. I asked Jim to drive me home. We quietly got up and left. On the way out, I ran to the nearest pay phone, dialed my dad’s phone number, my voice shaking, and I thanked him for the choice he had made. I was glad I didn’t sound like them!
Like them? Self-pity? Is that what I really thought? Looking back on that day, I realized it was my defense mechanism, my own way of accepting what was being said. Those teenagers knew more about CF than I did and were saying that the disease is fatal. Moreover, some day, it may take their life. I had chosen to ignore the positive stuff they were saying. I ignored the information they were sharing about how they dealt with the everyday situations. It was exactly what I had needed to hear, to learn from their experiences. I had needed them! They explained what happened when they got sick and had to be in the hospital. They shared their symptoms and how they knew it was time to get treatment. They shared their own personal issues about having to stop doing things they enjoyed because for whatever reason they got sick. I should have listened more carefully. They were answering the questions I needed answers to. But I couldn’t bear to hear it. I kept myself further in the dark. I chose to keep myself in my own denial. I chose to believe that because I lived a normal life and didn’t look sick, I didn’t have to deal with CF or the new way of life I would have to adapt. Mostly, if I didn’t listen, if I ignored it, or if I didn’t label myself, it would mean I didn’t have this disease. It meant I wasn’t sick, right? So I asked myself again, Was self-pity what I really thought those teenagers were describing? As I grew to accept and understand the disease, and my own body, no, I did not think—not at all—those teenagers were describing self-pity. They were describing and explaining CF and its reality, theirs and mine, the reality I didn’t want to be associated with. No matter how I describe it or label it, I can’t change that I have cystic fibrosis. But deep down in my heart, I wanted to. I wanted to have control over this disease, I didn’t want all that information I had to deal with it; it meant I really wasn’t normal, I was sick and I had to learn how to accept that in my daily life. That also meant I had to make some life-altering choices as I would get older. It meant talking to my parents, whether they wanted to or not. It meant digging deep into books and learning all I could about CF. It meant change, and I didn’t want to change anything. I even think that at that moment, I wish I hadn’t known. Unveiled allows me to share my journey with you.
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About the Book
Cystic fibrosis (CF), an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. www.cff.org.
Unveiled tells a true story of how life can change in a single breath. Unveiled is a true story about how two parents dealt with the devastating news that their baby girl was born with cystic fibrosis. Which in 1973 was considered a death-sentence.
When the doctor informed Laurie’s parents of the diagnosis of cystic fibrosis in 1973, Laurie’s father made the decision for the whole family, including her mother and her sister, aunts, uncles, and grandparents etc. to keep cystic fibrosis a secret from her. This story unveils the truth about how an illness can disrupt an entire family’s life in a single breath from the life they once knew and the challenges they faced, the unforeseen obstacles, the heartbreak and the triumph.
Laurie was a young woman of twenty-two when she found out the shocking news that she has a fatal disease, cystic fibrosis. She found out shortly after walking up the stairs one Friday evening and became short of breath. Since that moment on the stairs, Laurie’s life has never been the same. Behind the veil of distressing symptoms of CF, she overcame the shock of her diagnosis, learned to deal with its daily struggles and strengthened her relationship with her parents and her sister. With an optimistic view on life, a determined attitude, Laurie continues to live an amazing life with CF.
About the Author
Laurie Falduto-Huspen is passionate about how she lives her life. Laughing and enjoying the simple pleasures in a complicated life has made living with cystic fibrosis tolerable.
With every stride and breath, Laurie has also many accomplishments. She graduated with her Bachelors degree in English and Prelaw from
Laurie wrote Unveiled as a result of being harassed in the workplace because of CF and then terminated from her employer of four years in 2003 for taking an approved leave of absence: Family Medical Leave Act (FMLA) to have an invasive procedure. The employer terminated Laurie the day she returned from medical leave, knowing she had to have surgery within weeks of her return. This is against the law. When Laurie filed a compliant with the Equal Employment Opportunity Commission (EEOC) and her attorney, not to her surprise, the company fabricated the truth about Laurie, that in the court of law, Laurie’s attorney would have been able to prove otherwise. But instead of suing the company, Laurie decided to write a book about having cystic fibrosis and how it affected her rights in the workplace. Laurie found that writing the book was more beneficial to her and her readers with the intention to spread the word of cystic fibrosis in the workplace.