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From a Boy on a Bike to a Catalyst for Diabetes Inspiration, Education, and Change

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By Amy Cowen on November 14, 2013 6:00 AM

In honor of World Diabetes Day, we review a compelling autobiography by Phil Southerland, founder of Team Novo Nordisk. Phil didn't start out to change the world's view of diabetes or inspire others with diabetes, but his path on one bike after another led him to exactly that. Today, Phil and his team are making a difference around the world, raising awareness about Type 1 diabetes, and providing important role models for people with Type 1 Diabetes of all ages. Not Dead Yet, his story of how he got there, is an amazing read.

Shining a Light on Diabetes

November is National Diabetes Awareness Month (#NDAM) and today, November 14, is World Diabetes Day. Throughout the month of November, Science Buddies has been making daily updates at Twitter to highlight hands-on student science angles for students hoping to experiment with subjects related to diabetes.

Science Buddies has a number of science and engineering projects that specifically deal with diabetes. In addition, many other projects and resources may also be relevant for a student who wants to undertake a diabetes-related science investigation. Understanding diabetes, its symptoms, treatments, and risks is something important for all individuals—not just those with diabetes.

A few of our tweets from NDAM appear below:

@JackAndraka developed pancreatic cancer test at 15. What might a student #science project discover for #diabetes? #NDAM #T1day @NovoNordisk
Sucrose, Glucose, Fructose, Oh My!: not all foods turn to glucose at same rate #science @NovoNordisk #diabetes http://ow.ly/qkSiW #NDAM
How Sweet It Is!: investigate fruit/juice glucose concentration. Student #science @NovoNordisk #diabetes http://ow.ly/qkRRd #NDAM #STEM
Student #science idea: video game playing count as exercise? Tweak to investigate blood sugar changes #diabetes http://ow.ly/qkSqd #NDAM
"How Many Sugars are in Your Smoothie?" - student #science project #diabetes @NovoNordisk http://ow.ly/qkSLO #NDAM
Student #science "Modeling the Chances of Getting an Autoimmune Disease" with candies and dice. #STEM #NDAM #diabetes http://ow.ly/qAkIU
Student #science: Visualize the sugar in non-diet soda using a hydrometer. http://ow.ly/qkT5G #STEM #NDAM
Does the ripeness of the fruit change the carb count? Student #science #diabetes http://ow.ly/qkT9k #NDAM
Hands-on student #science: Analyze blood sugar data with range, variance, and standard deviation. #NDAM http://ow.ly/qMHEJ #diabetes

Hands-on Science Project for Students Interested in Diabetes and Health

Students wanting to learn more about diabetes—or wanting to explore aspects of their own diabetes with a hands-on science project—can get started by considering one of these Science Buddies Projects Ideas:

I don't know much about cycling. Other than the big names that probably everyone has heard of in the context either of sports victory, health-related comeback, or, unfortunately, circuit scandal, I am pretty clueless about the world of professional cycling. Other than the really big circuit races, I don't know one Tour de from another. And, a year ago, like many, many others, I didn't know Type 1 diabetes (T1D) from Type 2.

When I wrote about Team Novo Nordisk over the summer, I found myself unexpectedly caught up with the all-Type-1 cycling team, with what they stand for, with what it must be like to ride at that level and successfully manage T1D, and with the positive message they send to everyone they roll past on their bikes—diabetes doesn't have to stop you.

After reading the team's story and learning more about its grass-roots origins, I picked up a copy of Phil Southerland's Not Dead Yet: My Race Against Disease: From Diagnosis to Dominance. From online reviews and the book jacket, I expected the book to be about the trials and tribulations of managing T1D and being a professional athlete at the same time. I expected the book to be about diabetes, about winning against the poor odds doled out by doctors when he was first diagnosed with T1D as a child thirty years ago.

Not Dead Yet surprised me.

As I read Not Dead Yet, I learned about levels and intricacies of professional cycling (and of road racing versus mountain racing). I read, and I recognized in Phil qualities familiar to anyone who has lived in the "south." I read, and I found myself charmed, surprised, inspired, and amazed, time and time again by Phil, by the story, by the incredible amount of detail he recalls about countless races in the last two decades, by his persistently positive perspective on his diabetes, and by his transformation from an adolescent riding with buddies in his hometown to the founder and CEO of what has evolved into Team Novo Nordisk, a global sports organization.

As I read, I got glimpses of T1D, but not in the way I expected. Instead, surprisingly, though Phil was conscientious, always, about managing his diabetes, his diabetes runs almost as an undercurrent or side-story to his development as an athlete. There is a peanut butter and jelly sandwich he ate from another student's lunch in kindergarten when he was low. There is a cupcake moment he recounts this way: "At six years old, I became the CEO of my body." There is the fear of blindness, a common complication of uncontrolled diabetes, that underwrites his story and his acute attention, always, to his A1C number. There are slivers of diabetes throughout, but the bulk of Phil's story focuses on the growth and development of a kid looking for a father figure, a kid capable of incredible focus and determination, and, oh yeah, a kid with Type 1 diabetes.

That Phil's mom galvanized and educated an entire community of friends and neighbors when faced with the realities of Type 1 diabetes should not go un-noted, and Phil is quick to credit with his mom for how she handled his diagnosis and the management of his diabetes when he was young. In many ways, her approach to his diabetes seems to have set the stage for the story to come because, no matter what the sport or challenge, Phil didn't grow up thinking that diabetes should stop him. Early in his story, he writes: "At this point you might also be thinking that my childhood was a horror. Puking, injections, seizures, suppositories, divorce, and sibling guilt. A real barrel of laughs. Well, here's the other side of that story. These and a few other episodes stand out in my mind vividly, in part because they were the exceptions, not the rule. While some people find this hard to believe when I tell them, most of my childhood was... well, it was great." (47)

Recalling his early elementary school years, Phil writes: "I guess I was determined: determined to prove anyone wrong who thought I was not capable of doing what any other kid could do, and maybe doing it better. Determined not to let the diabetes rule my life.... Determined to excel, to succeed (although at what, I wasn't sure). Determined to get on with life and to do what had to be done. Above all, though, determined to be a kid—albeit perhaps a slightly more mature one. (52)

By chapter 3, 11-year old Phil has us following along as he spends time on the racquetball courts, determined to develop the skills and techniques needed to win against another boy about his age. With racquetball, Phil first begins a training regimen and pattern of determination that will recur again and again in his story, even as the sporting focus changes. On the way to developing his racquetball skills, he was told by a mentor to practice 50 shots a day of each of seven common racquetball shots. A couple of hours, every day, day after day. Phil was on his way and, with each shot and each new match, he was seeing in action a lesson that stuck with him: "hard work produces results."

Growing Up on a Bike

Although Phil recalls always riding something, it is when he was about 12 that he remembers things changing. With a new mountain bike, he and his friends would ride and ride and ride. And sometimes the ride would end with a Snickers bar, all that exercise allowing an insulin-free indulgence. The next new mountain bike put him in touch with a group of older riders at a local bike shop, Revolutions.

Slowly, first through mountain biking and then, later, through a transition to road racing, we see the development of Phil as an athlete, and as an adolescent approaching adulthood. There is a wonderful freshness to Phil's story. As an autobiographical account of growing up in the 90's, there are moments of teenage angst, moments of adolescent exploration, examples that stand out as tally marks on the quest for identity. When Phil goes to watch his first Twilight Criterium, he shaves his hair into a Mohawk, dyes it red and green, and pours Elmer's glue over it—"so that my single hedgerow of hairs stood up like bristled in a brush."

Candid and unexpected moments like these jump out and grab a reader time and time again in Phil's story. And as Phil's development as an athlete continues, there are moments when you might be tempted to forget that diabetes is the understory and insulin his lifeline. Mentions of a high blood sugar reading or, more frequently, the need to bolster a low blood sugar, dot the landscape of Phil's ride from one race to another. There are a few frightening tales of extreme lows, stories that reinforce the importance of friends being well-informed about diabetes and what to do if a problem arises. But racing, not diabetes, was Phil's platform as he began his years at the University of Georgia.

Then Phil meets Joe Eldridge, another cyclist with Type 1 diabetes. As he and Joe become friends, Phil realizes that not everyone with diabetes is as diligent about managing the disease as he is. He challenges Joe to a series of blood sugar checks, with the loser paying the tab for burritos. As Joe's approach to his diabetes changes, Phil realizes that he has something to offer—and realizes that he wants to connect with other diabetics and to help ensure others realize that diabetes is not easy, "but once you figure it out, everything else in your life becomes easier." (185)

Phil's story continues, and readers learn both of the injury that sets him back as a rider and of the kindness of a stranger at a coffee shop that helps him take a business idea from paper to reality. Team Type 1 is born, and Phil, who had practiced making conversation with people while working in a grocery store as a kid, begins dividing his time between pitching and growing Team Type 1 and his own training. There are corporate sponsorships which helped pave the way in the early days, and there are people and supporters who made the first Race Across America (RAAM) (and the second) possible. There are changes, challenges, hypoglycemic lows, nutritional experiments (and mistakes), logistics planning (and oversights), and successes and setbacks.

In Not Dead Yet, Phil takes readers along for the exciting ride.

It is a ride that continues to evolve, a ride that Phil and other members of Team Novo Nordisk, formerly Team Type 1, continue to chart as they manage their own diabetes and help show others with Type 1 Diabetes that taking control of diabetes is imperative and, once you do, you can do anything.

Note for Parents: Not Dead Yet: My Race Against Disease: From Diagnosis to Dominance is an amazing, real-world coming-of-age story, one that readers with an interest in sports or an interest in diabetes may especially enjoy. The book does include themes and subjects typical of many adolescent stories, so use parental guidance with your readers.