Thursday, May 12, 2011
Joanna Southerland held her tiny 7-month-old son in her hands and listened to him dying.
“His head was hanging down,” she says. “His feet were hanging down. There was this incredibly deep gasping for breath, like it was the last breath he would take.”
The deeply unnerving noise, she would learn, has a deeply unnerving name: the ketone death rattle. It happens to diabetics as their absence of insulin, which breaks down glucose into fuel the human body can use, allows glucose to accumulate, spiking blood sugar. Without useable fuel, the body starts to eat its fat, which in turn creates a ketone gas – and that offgassing gives the breath a fruity smell and a haunting rasp.
That diabetic ketoacidosis process, if unchecked, is imminently lethal.
“Phil was an hour away,” Southerland says.
She heard the doctors saying they were switching him from a hydrating saline IV – he had recently lost a third of his body weight, mostly water, to dip to a frail 14 pounds – to glucose, the rough diabetic equivalent of feeding someone who is choking.
Southerland only knew glucose malfunctions were diabetes related, but felt moved to make a plea they test for it. They called her insane, but she insisted.
The results validated a mother’s instincts. At the time, she says, little Phillip was the youngest child ever diagnosed with type 1 diabetes (the genetic sibling of type 2, which is usually caused by diet and lifestyle). He would live, they said, but under some vicious conditions: Twenty-four-hour monitoring, unrelenting injections, everpresent threat of coma or seizure, blindness on the way, heart attack and renal failure on its heels. They estimated he’d be dead by 25.
That’s one big, beautiful thing about life: its poetic irony. The kid who was due to die is now 29, having lived more in those years than most do in 80. The kid whose condition was once synonymous with fatigue and weakness has made dealing with diabetes his biggest strength. And when it comes to confronting disease, the kid who was supposed to lose his sight has realized a deliriously ambitious vision.
As Phil Southerland arrives here next week for Amgen Tour of California, North America’s largest road bike race, the cycling team he founded (and once competed with), Team Type 1, has become more than the first team to include a type 1 diabetic (they have six) – which is a little like a basketball team joining the NBA with a starter who can’t dribble. And after a victory May 1 in the Tour of Turkey by Team Type 1’s Aleksandrr Efimkin, they’re not just a rolling story with a moral, they’re suddenly a legit contender cranking for more.
“We’re a strong team, and every day in Turkey we got stronger,” Efimkin says. “To have these gladiator monsters pulling for me and protecting the leader’s jersey has made me a very happy man, and I feel we have strong momentum for the next two months of racing.”
Southerland hopes to use the Tour of California to announce a breakthrough TT1 Diabetes Sports Research Institute that will leverage cutting-edge endocrinology to bring diabetic athletes into the mainstream. His other six racing groups – a women’s professional team, a triathlon team, an elite amateur squad, a development team for type 1 diabetics under 25, and a type 2 team – continue to take a message of health and disease management to several fitness forefronts. His efforts in Rwanda to distribute diabetes test strips and blood glucose meters means his life-changing – and life-saving – work grows increasingly intercontinental.
“We want to help provide tools so [diabetics] actually have a chance to survive,” he says, “let alone dream.”
His memoir Not Dead Yet – which Mary Tyler Moore calls “a must-read for all of us with type 1 diabetes” – was published this Tuesday. “While I will probably never be able to say I’m diabetes-free or that I beat type 1,” he writes, “I am living proof that diabetes can be beaten into submission, which is what I’m doing every day of my life, and what I try to show others how to do.”
The guy pedals past limits those of us without the disease can barely approach. But he says it wasn’t until he was sitting in a Best Western in Carmel that the dream was drafted.
Before the Best Western came the bet. And before the bet came the bike.
In his first Schwinn, Phil found more than fun.
“For me the bike was freedom,” he says, “the only place where I was 100 percent like everyone else. I didn’t have to check blood sugar while I was on it, I didn’t take shots, I just had to eat. It was liberation.”
By the time he arrived at University of Georgia as a collegiate road cyclist, he was a hard core “criterium,” or sprint road bike, competitor. In his closest friend, Joe Eldridge, Southerland saw a fellow type 1 diabetic and cycling enthusiast, but he also saw an eroding individual.
“My best friend was not taking care of himself,” Southerland says. “We had the same access to medicine, same access to sports, but he didn’t use his bike, he wasn’t taking control.”
So Southerland proposed a bet. Higher blood sugar, which can be lowered by exercise and conscious eating, pays for dinner (with rules disallowing intentionally – and dangerously – low hypoglycemic levels).
For three months, Eldridge coughed up dinner cash. One night that stopped, and after Southerland dug in the couch for change, something happened. When Eldridge told him, “Listen, thank you for helping me – it changed my life,” Southerland’s motivation shifted.
“That was a game changer,” he says. “Everything got better for him: bike racing, school, his weight, everything. I went from seeing myself as a bike racer who could win money to wanting to help other people do the same thing Joe had done.”
To amplify that inspiration the two started speaking with diabetes support groups and continued biking a range of events, one of which brought them to Monterey. After a “century” ride into Carmel Valley (and preliminary jaunts down Highway 1 and 17-Mile Drive), they retreated to their hotel room. Southerland contends the beauty they had absorbed shifted their schemes to a higher gear.
“‘Let’s do something big,’” they decided.
They considered biking across the country, but felt it would take too long. Then they decided to do something daring: The Race Across America, an obscenely intense coast-to-coast sprint that, as Southerland writes in his book, is “right up there with ultramarathons in the desert and U.S. Army Ranger competitions… bike-racing cycling purists find RAAM bizarre; ordinary people find it riveting.” Starting in San Diego and ending in Annapolis, Maryland, a team rides without so much as a fleeting breather, swapping out riders every 20 minutes because that’s about as long as pros can flat-out sprint – for days on end.
“Every pedal stroke is all-out,” Southerland says.
With his story, he scored a sponsorship from Dexcom, which was developing a constant blood-sugar monitor. Then they recruited an all-type 1 team.
“Assembling six racers was a challenge back then,” he says. “Now we have 60.”
The first year – despite having to micro-manage what non-diabetic metabolism does naturally, timing injections and balancing delicate blood levels along precise time tables and checking blood sugar as many as six times in the last hour before jumping on the bike – they crossed the country in just five days, 15 hours and 43 minutes, finishing second.
A year later, in 2007, they won. Southerland blames the wooziness from the ride and a couple of sips of Champagne for what happened next.
“We had gotten so many e-mails – parents, adults, kids – on how much hope and inspiration we created, how because of us their life changed for the better,” he says. “Biking is our platform, so I thought, ‘What’s the grandest stage of bike racing? Tour de France.’ On the podium with 27 hours without sleep, two sips of Champagne, and a little weight off, I said, ‘We’re going to put a type 1 diabetic in the Tour de France by 2012.”
His mother remembers watching him bobbing, alone, in an Olympic-sized pool, a third-grade tadpole, looking up and asking if she would wait by the pool because he had a goal to accomplish.
“I’d like to swim four miles,” he said.
Now he had another aim. The year 2012 was calculated: That would allow just enough time to successfully train and plan for a type 1’s completion of the most grueling race on the road. That Southerland – a nationally ranked sprinter – would not be able to physically participate, however, was not planned.
Joanna Southerland has seen her son assume control of his own shot administration at 6, seen him demand of his doctors, “What is it going to take for me to not go blind?!”, seen him go from death’s doorstep to the winner’s podium.
“I’m not a religious person,” she says, “but it’s a miracle.”
The most inspiring thing of all, she says, came when an arterial blockage in Phil’s femoral artery – which strikes crew and cycling enthusiasts who must bend over chronically – meant his dream of competing in the Tour de France was dead, and no amount of shots could bring it back to life.
“He can’t race like he once could,” she says. “But he didn’t give up his dream.”
Instead he expanded it. He says Team Type 1’s three-prong mission right now is research, racing and Rwanda. The research reaches further with the pending institute, the racing is riding higher than ever with the Turkey triumph, and, in Africa, hope is finding a foothold.
“Our work in Rwanda shows the value of diabetes supplies and education,” Southerland says. “The goal is sustainability and scalability, to get supplies to kids all over the world. I can’t cure diabetes, but I can cure death from diabetes. Races like Tour of California are giving us that platform.”
When the Weekly caught up with Southerland, in fact, he was in Paris, meeting with people he describes as opinion makers in the diabetes world, to spread his message that diabetes is a lifestyle, not a disease. The subtext, he adds, is to prime the public pump for the message when his team gets invited to the Tour de France next year. The nature of the visit – public policy over race planning – speaks to the new dimensions of his dream.
“It’s more than just a cycling team,” he says. “Cycling is just a platform for our message. If you take control by checking blood sugar, taking shots, exercising, anything is possible.”
On Thursday, May 19, a type 1 diabetic biker named Javiar Megias will zip through Seaside and into the golden Carmel Valley hills toward Greenfield.
Southerland calls him arguably the best type 1 athlete in the world.
“He’s a phenomenal athlete, he loves the bicycle, he loves racing to help people,” Southerland says. “He’s an athlete, a champion.”
Megias will also have the green light from the team’s founder and CEO, one Phil Southerland, to seize the opportunity to win a stage (though the team will be primarily focused on getting Efimkin the overall title), which would be the first heat ever conquered by a type 1 diabetic in a race of this magnitude.
Such an accomplishment, like Southerland’s survival, would’ve seemed impossible 30 years ago. Now the poetic irony is this: The only real impossibility is telling Southerland, Megias and company that they can’t pull it off.
THE AMGEN TOUR OF CALIFORNIA starts in Lake Tahoe on Sunday, May 15. Its fifth stage leaves Seaside 9:30am Thursday, May 19 (see map, p. 19). www.amgentourofcalifornia.com