Imagine breathing through a straw for as long as you can remember. On the other hand, dating someone with such a serious disease can be a serious task in itself, especially if you know nothing about it.
This is the world of cystic fibrosis.
“Our relationship is very unconventional,” said USM senior broadcast journalism major Jordain Lang. “When we first started dating, it didn’t occur to me how serious CF actually was. It scared me looking at the things online…. it was really terrifying.”
Alum Jonathan Lawler has handled his sickness every day for 23 years, often taking the next treatment more serious than the last. Every morning he wakes up, he straps on a 10-pound vest and remains stationary for 15 minutes.
Whereas other people would wake up for breakfast, his morning meal involves breathing routines and having his ribs beaten down for the day, in just the first 30 minutes from when he awakens.
Cystic fibrosis is a illness that affects more than 30,000 people in the United States, with the average lifespan of someone affected being 37 years. Lawler has theoretically lived almost two-thirds of his life.
But he does not see it that way.
“I can walk out into the street and get hit by a car,” Lawler said. “Is CF something that does hang over my head? Yeah. But everybody else has their own problems. I’m going to go out the way I want to.”
According to the CF Foundation, cystic fibrosis affects lung functions and the ability to breathe properly.
“In people with CF, a defective gene causes a thick buildup of mucus in the lungs, pancreas and other organs,” says the company’s website. “In the lungs, the mucus clogs the airways and traps bacteria, leading to infections, extensive lung damage and, eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.”
Lawler lives with his dog and Lang.
“I find courage in Jonathan,” Lang said. “He’s one of the most loyal people I know. I think his role in this life is to inspire others. There are people that have met him and their life is changed because of his story.”
Lang is not the only one that supports Lawler. Sometimes, he finds his biggest inspiration in others with similar struggles.
Steve Richards, a 53-year-old suffering from CF, is the founding chapter president of Delta Tau Delta. Richards and Lawler speak from time to time, motivating each other to get through the various treatments each must endure.
“Jonathan and Papa Steve have an interesting relationship because they both have cystic fibrosis,” Lang said. “Papa Steve is able to knock sense into Jonathan.”
A 5K on campus honors Richards and others who battle CF.
“It’s not a death sentence because it doesn’t affect me in a way I won’t allow it to,” Lawler said. “Just like anything else, you’ve got to turn it into a positive. I know [Richards] strives in with everything he does in his life and he’s overcome CF every step of the way.”
The story of cystic fibrosis does not end at the age of 37.CFhasaplacein not just in Lawler’s life but in Lang’s as well. CF is as much a part of their life as a couple as the next spot for a dinner date.
For instance, with every meal, Lawler has to take eight pills just to digest any food of substance.
“It affects my lungs, my ability to breathe, my digestive system and as well my immune system,” Lawler said. “Because of the mucus, it really over the long run affects my ability to breath and process foods.”
CF is by no means a death sentence for Lawler. Lang does not look at it that way, either.
“To me, one day with Jonathan is so valuable,” Lang said. “I would rather be with Jonathan for the next 12 years than to be 70 and be unhappy. I had to ask myself would I be happy with anyone else, knowing that I would be leaving this relationship that has a piece of me in it.”
Through one illness this couple realizes they can handle any obstacle, one breath at a time.