Ben Hadel is having a bad day. As soon as he woke up, he knew he was not going to make it to class. He is not hung over or tired from a night of study as some of his friends would be. If only it were that simple.
Ben suffers from cystic fibrosis, a fatal disease that causes the body to produce thicker mucus than usual. The mucus accumulates in his lungs making it difficult to breath and leading to lung infections.“It’s hard to breath when the weather gets colder, it irritates my lungs,” Ben says. “The weather was great yesterday, but today it sucks.”
Ben is sitting on his couch with a laptop on his lap. His feet are embraced by pink wool socks that keep the cold away. He reaches for his nebulizer – a device that helps him clear his lungs of all the mucus and fight off any infections – and places it in his mouth. It gently hums as he inhales the misty air that will take the medicine to his lungs.
“You feel your lungs opening up as you do it,” says Ben. He then coughs out some mucus into a 7 Up can. “Nasty, huh?”
This process will continue for the next 45 minutes, and Ben needs to do it at least twice a day. He needs to use the nebulizer, do breathing exercises, and take antibiotics and insulin shots. He dedicates about two hours on good days to take care of his disease. It can be more than four hours on the bad days.
“It’s hard to maintain a normal schedule with all the treatment and cystic fibrosis acting up,” he says.
On average, Ben feels bad a couple of days a week. His lungs will behave erratically depending on the weather, stress, and exposure to diseases, thus making it hard to breath and tiring him. This makes it hard to predict how his day will go.
“I will have days that are pretty shitty, but it is the unpredictability what really frustrates me,” Ben says. “Things will be going great, and then all of the sudden go bad.”
Last year things went very bad for Ben. It was his first semester at the University of Kansas, and the stress of college life, allied with the diabetes he developed because of cystic fibrosis, kept him in the hospital for the final three weeks of college.
“I got incompletes in my classes, and am now working to complete them together with my 12 hour class load,” he says.
He turns off the nebulizer and coughs up some more mucus. His eyes water up from all the coughing.
Ben lives with his brother Andrew, a senior at KU, in a two-bedroom apartment. He had to move out of his fraternity because he needed a cleaner and quieter environment. Andrew, a big 5-foot-11-inch guy, looks like a giant compared to Ben’s tiny 5-foot-5-inch frame. Cystic fibrosis also affects the person’s growth.
“I think he’s incredible. He deals with his disease as if it wasn’t a big deal,” Andrew would later say. “I’m glad he got to move in with me, he is such great company.”
According to the Cystic Fibrosis Foundation, the disease affects 30,000 people in the United States. Fifty percent of the people who have it are expected to die by the time they are 36.5 years old, but research revealed last month in England gives hope for a cure utilizing gene therapy.
Even though Ben, who will turn 19 in October, has statistically lived half of his life, he is optimistic about the future.
“I am sure I’ll live a lot longer than 30,” he says. “For a while the low life expectancy bothered me, but I figured it’s something that happens, and I think I can kick its ass. If I don’t, that’s just that.”
Ben does not want to just live a normal life; he has some impressive goals he hopes to reach.
“I hope to complete an Ironman triathlon by the time I am 25,” he says. “I hope it inspires other people with cystic fibrosis.”
Ben is currently practicing for a half-marathon in July. He runs every other day for at least three miles. He did not practice today since he was not feeling well.
“It doesn’t really matter, my real training only starts next month,” he says.
Ben opens up a Website that has his training calendar in it. By mid-July, he will be running 35 miles a week. He feels good when he is running. It helps him with his breathing and makes it easier to expel the mucus.
He has it all planned out. He will complete two half marathons, two marathons, a half Ironman and then attempt the full Ironman.
“I definitely think he has the will power and strength to do that,” Andrew would later say.
The physical accomplishments are a way to prove to himself that he is healthy enough to accomplish other stuff. Stuff that is common in other people’s lives but hard to deal with when you have cystic fibrosis.
“I really want to have kids, and if I complete something like that I think I’ll be healthy enough to raise them,” Ben says. “I only want to have them if I figure I’ll be around.”
Ben is infertile because of cystic fibrosis, so he will have to resort to some artificial form of reproduction.
“At least for now I don’t have to worry about getting a girl pregnant,” he says wittily, “I was going to call my parents on April Fools to tell them I got this girl pregnant, I guess I didn’t really think that through.”
Humor is characteristic of Ben’s speech and he can make a joke out of anything, even his disease.
“He is one the funniest guys I know. From the second we would wake up he was already cracking jokes,” Chris Towel, Ben’s friend and old roommate, would later say. “He
doesn’t see himself as different than anyone else, it’s as if he weren’t sick.”
“I just make sure I do what I have to do, even if I’m feeling bad,” Ben says.