November 11, 2023 6 min read 6 Comments
This is John Weeks, 61. He was born with a congenital lung issue. His story is worth four minutes of your time.
By Ray Glier
The man in the picture is 5-foot-11 and once weighed 330 pounds. He did not have a pizza/beer/candy problem. He had a congenital lung problem. John Weeks, 61, could not so much as walk up a flight of stairs without gasping for air. While he sat and sat, John was given large doses of steroids and gained weight. He could be hooked up to a ventilator in a hospital for oxygen, but he obviously couldn’t take the machine home with him.
John’s earliest memories in the 1960s as a child included staring at the ceiling of a hospital room where he spent most of the first five years of his life.
Then science—and John Weeks—rescued John Weeks.
In 2005, the industrial-sized ventilator was replaced by a smaller, bedside ventilator he could use through the night to supply oxygen for the next day, and every day after that. Weeks came off the steroids. He could exercise.
John’s life was reassembled after 43 years. His weight dropped from 330 to 165 and has held at approximately 180.
Weeks, who is fighting with Congenital Central Hypoventilation Syndrome (CCHS), is planning an ultra run in 2024 of 100 miles. He has done marathons in all but 12 states. John has done half-marathons in all but six states. He has done the Big 6 marathons of Boston, New York, Chicago, Berlin, Tokyo, and London.
The phys ed teachers who would persecute Weeks in Wassau, Wisc., for bringing a doctor’s note excusing him from that day’s activities, should drop and do 100 pushups.
“You know, there are times where I'm out running and it just seems weird to think of myself as doing stuff Olympic athletes do, or stuff that these endurance athletes are doing,” John said. “It just feels really weird to be part of that crowd because my whole life, up until my 40s, I was disabled and not able to do stuff. I was sitting on the sidelines.”
CCHS occurs when the brain does not send a strong enough signal to breathe. In response, Weeks' heart sent a strong enough signal to live.
So while the science played a part, John played a part with resilience, especially these days as he stays active.
“I am just really fearful of ever going back to something like that,” Weeks said. “I was very lucky that a new treatment came out when I was in my early 40s. And I had a really good lung doctor who helped me through it. I went through hospital weight loss and exercised. I just can't imagine going back where things get out of control, so I keep moving.”
"Going back" means being denied health insurance. In the early 2000s, it was difficult for John to work because his blood oxygen level was too low to think clearly. Health insurance companies deemed it a "pre-existing condition" and would not cover any treatment.
It was an arduous existence. John became interested in bridge photography and one day he wandered down a remote path, he said. By the time it was too late, he realized he had gone downhill.
"I was in trouble," Weeks said. "I could only walk a few steps up hill before I got winded and had to stop for a few minutes. Each time I stopped, the mosquitos would attack me. I calculated how long it would take me to get up the hill at that rate, and it was around 2 hours."
Weeks was on a figurative ledge. He could "wrap up my affairs and wait for the end" or he could decide to no longer be subjugated to the disease.
He chose to live and sought out the doctors himself, insurance companies be damned. They put together plans and treatment options, which included the home ventilator. The quality of John's life steadily improved.
Does John have that moment of illuminating peace, that moment when it all came together in one big hosanna?
In March 2013, he signed up for a half-marathon at Fort DeSoto in the Tampa/St. Petersburg, Fla., area. The race started before dawn. At the 4-mile mark the runners rounded a slight bend. There, ahead of John, was the sun rising between the majestic uprights of the Sunshine Skyway Bridge. The sun was dead middle in John’s field of vision framed by the steel.
“It was one of the most beautiful sights I've ever seen in my life,” Weeks said. “I almost had to stop running because it choked me up so much. I started thinking about all the people that helped me get to that spot.
“That was really my epiphany moment of how lucky I was and how cool it certainly was to be running.”
This is how you want your manifesto to be punctuated. Sun rising for an epic background. Lungs filled with air. Thankful. Appropriately, John's hobby is photography of bridges, big and small, old and new.
Did I mention John did an Iron Man in Kentucky?
Weeks, who lives in Burnsville, Minnesota, also ran the Grandma’s Marathon Double. Three times. That’s 52.4 miles before lunch.
While the official marathon started at 7:45 a.m., Weeks and friends showed up at 3:30 a.m., ran the course in reverse, took a 15-30 minute break to eat, and change clothes, and then ran the full marathon…again.
Here is the amazing part of his story, or another amazing part.
His heart fought so hard for breath for so many years that John became a warrior against altitude because his body was basically running uphill. His heart was, believe it or not, very strong after years of doing combat with his insufficient lungs. Now he can run up hills while many of us will labor.
“My doctor said I did altitude training for 40 years,” Weeks said. “She said my body is good at processing oxygen and that my cardio is actually stronger than my muscles. So I’m not really limited by my breathing when I’m actually out running.”
I talked to John for 43 minutes and this man did not give off one ounce of bitterness about his journey and how he was mocked. I had to prod him about phys ed class and his younger years to get a hint of what it was like for him as a kid.
What he talked about was meeting up with some high school acquaintances he knows to be runners. He didn't talk about throwing his athleticism back in anybody's face as if to say, "Look at me now."
Before his running, John was not void of all life has to offer and what he could contribute to society. Even with the illness, he earned a Math degree from the University of Minnesota/Duluth. Weeks was good with recognizing patterns in data and he was part of the first wave of people using Big Data in court cases, especially complex civil cases involving science.
John did so well he stopped accepting new clients at 56 years old. Two years ago he sorta/kinda retired. John is focusing on John, for now.
John Weeks can teach us so many things on so many levels.
We know about gratitude with his run into the sun that morning in Florida.
“The biggest thing is never compare yourself to anybody else,” Weeks said. “Just go do it and see what you can do. It hurts a lot when you start. It kind of sucks. And then one day the magic happens.”
“Starting easy is a really hard concept for a lot of people,” John said. “I worry that people might see some of the things I do and get hurt. If people try too hard and tend to go above what they're capable of and make it hurt way too much, they might get to where they can't push through it.”
To see what John does click here to see his Facebook thread.
“It is such a fine line. Each person has their own level of energy,” Weeks said. “Make sure you start slow and stick with what you can do so you are not jumping off a cliff.”
John started slow in 2005. The first three years with his new ventilator he just walked. Then he started with a mile jog. And look at him now.
“Everybody goes through injuries and down time and I worry about that myself, but at least I can fall back on swimming if my legs get tired,” he said.
John told me one last story about his early memories with the disease. He was only two years old when the 1964 Olympics were held in Japan, so maybe his mind’s eye trapped this video replay moment when he was four, or so.
In Olympics highlight reels he remembers seeing the first Bullet Train, which linked Tokyo and Osaka and stopped at Mt. Fuji.
“I decided if I ever get out of the hospital and I want to go to Japan some day and ride the Bullet Train,” John said.
On March 6, 2023, two days after he ran the Tokyo Marathon, John Weeks rode the Bullet Train to Mt. Fuji. It was exhilarating, just like the exhilarating ride he has been on the last 18 years.
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