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Inspirational Speech given by Fowler at the Chiron Conference 5.11.2004 This Speech was given at the Chiron National Conference in San Francisco on February 10, 2004. Some things have changed since this speech, but it has been very inspirational to the many that have read it and I wanted to share it with everyone.
The Power to Dream; The Power to Live: By Chris Fowler I am honored to be here today to share with you what it is like to live with cystic fibrosis, or CF. When I was asked to speak, I didnt realize how emotional this would be for me, but in preparing, I have been given an opportunity to reflect on the past 28 years of my life, and I certainly am grateful for all that I have been given. I fit perfectly with the theme you have chosen, not only because you at Chiron have the POWER to heal and build better futures, but also because its taken real POWER for me to manage my disease and live out my dreams, one of which requires true POWER, and that is being a race car driver. I think its pretty cool that I can legally drive a car at 180 MPH, and, as you will see, you have helped make that happen! And of course, I wouldnt be where I am today without the love and support of my mother, Linda Fowler, who is in the audience today. Before I share my story with you, I will tell you that living with cystic fibrosis has not been easy, but Ive learned to manage my disease. Although I went through a time when I no longer wanted to live, I was able to turn my disease into my reason for living. Although there is not a cure for my disease right now, companies such as yours are certainly improving the lives of CF patients as we wait for that cure. I was born in 1975 in Louisville, Kentucky, as the youngest of three children. As I began my first few months of life, my mom became concerned that something might be wrong with me, but she didnt know what. I wasnt growing or gaining weight like babies were supposed to and my digestive system did not seem to be functioning properly. My mom insisted that my doctors run tests to determine what the cause might be, but the doctors kept saying that nothing was wrong and that I was just growing slowly. Thankfully, my mom was persistent, and after six months, I finally had tests done that revealed I had cystic fibrosis. At that time, the life expectancy for CF patients was 5 to 7 years old. Even being that young, from that moment on, my life would forever change. Of course, in 1975, doctors werent as certain about the best treatments for CF patients. They werent even sure if exercise would be good for me or if it would just make things worse. But my doctors encouraged my parents to keep me active. Since I was born in Kentucky (the basketball state!), that was not a problem. From the moment I was crawling, I had a basketball in my hand. And as a young child, I was able to stay fairly healthy by taking my daily vitamins and Pancrease to help digest my food. However, I had to take some type of medication almost every day for allergies, colds and sore throats. My immune system could not fight off the infection. At age 4, I had my tonsils and adenoids removed to help me breathe better. I started Kindergarten at age 5, but I was sick all of the time from being around all of the other children, so my mom had to pull me out of kindergarten and I was taught at home that year. Once I was back in school, it was never easy being different from everyone else in school. My classmates wondered why I was always coughing, why I had to take medicine when I ate, and why I was so much smaller than they were. I stayed pretty quiet and kept to myself; I never told anyone that I had CF. But I also knew that most people wouldnt even know what CF was. When my family and I went out to eat or were in public, people would stare at me while I was coughing and some people were even afraid that I was contagious. When anyone asked me what was wrong, I just blamed it on allergies and sinuses and never told anyone that I had CF. My parents became angry because of some of the things people would say to me or just because of the way they stared. I figured that if I didnt tell anyone I had CF, I would just be treated like a normal person. After all, I was a normal person; I just had a disease that was not my fault. I played several years of basketball at the Louisville YMCA until I was eight and my mom was transferred to Jacksonville, Florida, where I live now. As soon as we got there, I became involved in all kinds of sports. Since Florida weather is warm almost year-round, I never stopped! I played basketball, football, soccer, baseball, tennis anything that would keep me active. Even though I played all of these sports, my true love was Motorsports! I always dreamed of one day being able to run in the Indianapolis 500! I dont think my parents ever took me seriously when I told them I wanted to drive a race car. I dont think they thought I would be healthy enough to drive, plus they were scared I could get really hurt, which could cause more damage to me and my lungs. But at the age of 12, I was able to prove to my parents how much I really wanted to race. At the time, Chick-Fil-A was sponsoring a contest to win a go-kart. It wasnt anything too fancy or fast, but it had a plastic body that made it look like the space shuttle. I was determined that it was going to be mine. So, I spent the next two weeks of my life filling out entry forms to win the go-kart, and 5500 entry forms later, that go-kart was mine! After many months of driving, my parents finally caught on that I was serious, and we traded that space shuttle in for a racing go-kart. We took it to the track every weekend so that I could drive. However, the kart continually needed repairs and upgrades, and we didnt have enough knowledge or money to keep my dream alive. So, as quickly as it began, my hopes of racing ended. But I still had basketball, and it wasnt nearly as expensive or dangerous! Even though in junior high school, I was the little guy running around at 411 and about 90 pounds, I packed a big punch. I was the starting point guard for the JV basketball team, as well as the pitcher for our softball team, and I was the quarterback for the flag football team. I may have been little, but I played with a big heart.
It certainly was a scary thought to grow up and
not really know what the future could hold. I would ask myself, Am I
going to make it to 16 to get my drivers license? Even though I stayed active and fairly healthy, my parents and I knew that over time, my CF would begin to take over. Unfortunately, at the age of 16, I was hospitalized for the first time because of my CF. And for the first time in my life, I was terrified – not terrified of being in the hospital, but terrified of dying and what the future would bring. This is when I first started to understand the effects CF was having on my life, and that I would eventually die from this disease. The doom and gloom surrounding CF was that I wouldnt live beyond my 18th birthday. This is when I went into my slump or depression. I didnt see much of a future for me. I had a constant cough; it was difficult to walk up and down the stairs; I had endless sleepless nights of just waking up and literally choking. I felt it was just time to give up and not fight any longer. All the doctors wanted me to do was wake up, take medicine, take more medicine, go to school and work, and come home and take even more medicine. I didnt see the point in doing that. I was very angry and questioned why life was worth living if I had to make that much effort. My parents, the doctors and my friends all tried and tried to get me to take my medicine, or otherwise, I would just end up as another CF statistic. But I still wouldnt take my medicine, and as a result, over the next several years, I was hospitalized two or three times a year for up to two weeks at a time. When an exacerbation of my CF occurs, I normally go into the hospital for a 10-14 day stay. Not exactly my idea of fun, but necessary. Before I am admitted, I am given a PFT (or pulmonary function test) to measure my lung capacity before I go in, so that the doctors can see there is improvement before I go home. While I am in the hospital, I am on the NO diet plan. I am supposed to eat what I want, when I want and lots of it! Gaining weight is the key to staying healthy. I usually receive 2 different medications through an IV to combat the bacteria. They take a lot blood to determine the amount of medication I need. The best thing that can be done for CF patients is chest physical therapy. This is where the nurses literally beat on us to loosen up the mucus in the lungs, and boy does it work! They put the bed down, so that my feet are higher than my head and they beat on my back and sides from anywhere between 30 minutes to an hour, and we do this 4 times a day. After about the 4th day in the hospital, once I start to get some of my energy back, I begin physical therapy. Most of the time, I just walk on a treadmill or get on a bicycle. Anything to stay in shape, get me to cough, and get energy back into my system. Over the years, I could see that I was really hurting the people who loved me by not taking my medicine. The more I thought about it, the more I realized that maybe there was a small bit of hope for me and I did have not just one, but many reasons, to want to live. In my early 20s, my doctor introduced me to a new medication that had proven to be successful with CF patients, especially keeping the lungs clear of mucus so we could breathe more freely. Plus, this medicine would help get my PFTs back up to where they needed to be. This new medication was, of course, TOBI . I was told I needed to take the medication via a nebulizer twice a day for 28 days, and I was to do this every other month for a total of six months a year. At first I was skeptical, but I knew I had to start taking care of myself once again. Well, it only took about three days of being on TOBI for me to feel a difference and for me to start breathing easier. I even started to gain weight. It was at this point that I gained a new outlook on life, and I knew I was going to be around for a very long time! I am thankful that ever since I have been on TOBI , my hospital visits have lessoned from two to three times a year to just one, and soon I look forward to it being less than that! Even with the occasional hospitalizations and all the doctor visits, I am pleased to tell you that I have graduated from college with not one degree, but four! I have an associates degree, as well as degrees in Marketing, Networking and Information Systems. I am employed full time as a Network Engineer for Coleman Technologies, Inc., and I also own my own Web hosting and Web design company that I manage on the side to try and find funds to keep racing.. When I was out of college, with a full-time job and my own money, I decided it was time to pursue my dream to race once again. I started racing go-karts, and after my first year, I had six wins and 10 podium finishes on my way to winning the championship for the local Senior class. I just knew I was destined to be in a race car, and in April of 2000, I finally got my chance. I honestly didnt know what to expect when I got in the car. I wasnt sure if I would be able to breathe or if I would tire too easily. The cockpit is very small, and you have to squeeze your legs really tight to get into the car. Driving the car was an amazing experience; one that I will never forget! And that was just the beginning. In my first race, I had a scary experience when a few of the cars crashed and a car actually landed on top of me, but even that wasnt enough to make me want to stop! In October of 2001, I decided that if I wanted to drive a race car, I was going to have to make a lot of sacrifices. I was going to do anything it took to try to build a racing resume that would be good enough to land a sponsor! So, I sold the condo that I had just bought, I sold my 1999 corvette and I moved back home. Everyone thought I was crazy, and I probably was, but I was determined to finish out the season. When the season ended in 2002, I had a total of two podium finishes, eight top-fives and 13 top-tens, which meant I finished in 9th place in the championship out of 127 drivers in my rookie season! In 2003, one of my test days was televised on the local news! This interview opened up the opportunity for me to talk about what CF is and what its like to live with this disease. I was proud of myself for not keeping quiet and doing everything I could to spread awareness for CF so that a cure can be found. I also was able to announce that I had pledge to give ten percent of my race winnings back to the CF Foundation. Although I want to make a career out of driving a race car, its even more important to me that I use my skills and talents to raise awareness for this disease. Since this first interview, I have been invited back on TV to talk about racing and living with CF, as well as to participate in my local CF Foundation chapter events throughout 2004. Ive even been asked to join a race team based in Miami MAG Motorsports! This was a huge announcement for me, and I am looking forward to working with the team. If we find the right sponsors, our team plans to run in the NASCAR AutoZone Elite Division for the southeast, as well as the Florida Sunbelt Series for extra seat time, so that we can shine in the NASCAR arena. As you can see, I have lived a long, successful and wonderful life, even though times have not always been easy. I am not sure where I would be today without the use of TOBI . I certainly wouldnt have ever been able to get into a race car, and I wouldnt be as healthy as I am now. I have accomplished more than I could ever imagine, and I continue to strive to succeed. I have made it this far and plan to never stop, I know that I can do whatever I want, as long as I follow my heart and keep a positive attitude (and take my medicine!). My daily routine is to use my therapy vest in the morning and at night, as well as TOBI twice a day. I also take two vitamins a day and up to 12 pills a day to help digest my food. I am on the treadmill several times a week along with riding a bicycle on weekends. Because I have CF, people may wonder why I choose to participate in a sport that in itself is a risk. To me, racing is about so much more than actually driving the car at an incredibly high rate of speed. For me, its about power. Not only physical power, but mental power. Id like to share with you an excerpt from a piece I found about racing a few years ago, called What Is Racing. It mirrors not only the challenges of the sport, but also the challenges of living with CF.
Racing is about power. Its about leading the
charge of a thousand screaming banshees, having your body wrenched and
twisted and tossed about by the hands of great unforeseen forces. Its
about brilliant colors, flashes of light, ear-splitting shrieks, and
bone-rattling rumbles. Its about the unforgettable smell of burning
rubber, smoldering brake pads, and gear oil. Its about reaching through
the steering wheel all the way down to the tires and feeling the road
slipping past your fingertips. Its about faith, faith in yourself, in your crew, in your fellow competitors, in the workers, and in the men and women who designed this car, these tires, and this track. Its about believing in your roll cage, and your safety harness, your Nomex suit, and the fire system that has never been put to the test. Its about knowing that no matter what happens, you chose. Its about living life in the cutting edge of a razor, hanging it all out there, going for broke. Its about knowing, without a doubt, that youre alive. Its about putting your heart and soul into something and letting the whole world see what you can do. Its about knowing that in the midst of the confusion and emotion and heart-stopping action, you were the one that mattered. I am thankful for your support and all that you do to help make the lives of CF patients better and to give others hope as you have done for me. I want to serve as a role model not only to other CF patients, but also to the parents of children with CF. I know they are in need of inspiration and comfort to know that their kids are going to be OK.
I want to be able to show them that there is hope
and that their kids can succeed, too. I am thankful for every day that I
am here and know that every morning I wake up is another day that I can
help make a difference in someone elses life. Thank you very much, and Ill see you in Victory Lane!
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