Not Dead Yet: My Race Against Disease: From Diagnosis to Dominanceby Phil Southerland, John Hanc
Part memoir, part sports adventure, Not Dead Yet tells the inspirational story of Phil Southerland’s battle with Type 1 diabetes and how from diagnosis to sheer determination, Phil Southerland beat all odds and turned his diagnosis and his passion for cycling into a platform. From leading a Race Across America to now managing a world-class cycling
Part memoir, part sports adventure, Not Dead Yet tells the inspirational story of Phil Southerland’s battle with Type 1 diabetes and how from diagnosis to sheer determination, Phil Southerland beat all odds and turned his diagnosis and his passion for cycling into a platform. From leading a Race Across America to now managing a world-class cycling program, his journey on and off the bike is changing the way the world views diabetes.
When Phil Southerland was seven-months-old, he lost ten pounds in a week, his body was limp and his breathing slowed to what his mother called a “death rattle.” Rushing him to the ER, she was informed that tiny Phil displayed the youngest case of diabetes on record in the world at that time.
Blindness, kidney failure and death were all predicted for him by age twenty-five. Twenty-nine years later, not only is Phil alive and well but as the founder of Team Type 1, he and his team of championship cyclists — many of them diabetics—have become health and fitness role models for people the world over.
Together, they have taken on some of the most challenging endurance events in the world, including winning the Race Across America—a grueling 3,000-mile endurance competition—twice. Today, Phil continues to lead Team Type 1 as its professional cycling team, among one of the top 30 teams in the world, races toward an invite to the world’s top cycling event, the Tour de France in 2012. Leading the pack is a serious challenge for any athlete, but for Phil and his teammates, it presents two daily battles: one to stay in razor-sharp race-fit condition, the other, to stay alive.
Not Dead Yet is Phil’s powerful story: his account of his relationship with his mother, and how she struggled to keep him alive; growing up quickly in the New-Old South of the 1990s, learning at the tender age of 6 years old how to check his glucose and give himself injections; of how he fulfilled his dream of becoming a professional athlete using his team and the bike as a platform, inspiring thousands of individuals and families around the world who are battling diabetes to not just chase, but catch, their dreams.
Inspirational memoir from a champion cyclist about overcoming a bleak diagnosis of diabetes and rising to the top—on his bike and in life.
Southerland was diagnosed with Type 1 diabetes at a young age. As a teenager, he dreamed of creating an organization to help those who were similarly afflicted. As an adult, he took the first steps toward his dream by founding Team Type 1, a competitive cycling troop comprised entirely of Type 1 diabetics that has won a number of championships. Cashing in on his status as a renowned athlete, Southerland began distributing medical supplies and campaigning for diabetes awareness around the world on a scale that surpassed even his wildest teen dreams. Here, the author describes a harrowing and sickly childhood, during which he was dragged from doctor to doctor, each prognosis gloomier than the last. He recalls the personal challenges he faced and overcame on a daily basis in dealing with his diagnosis, which inherently laid the foundation for the strength, will and fortitude it took for him to become a champion athlete. The author's passion for cycling and drive to excel became blueprints for controlling his disease and living a healthy life. This motivational coming-of-age story veers between inspiration and action. Southerland's accounts of cycling tournaments are so vividly portrayed, and his optimistic and humorous tone is appropriate for any age group.
Uplifting book for any person struggling with hardships and looking for the strength to overcome.
“Phil Southerland's autobiography is an inspirational coming-of-age memoir about a type 1 baby who wasn't supposed to live… It's an engrossing book, a sports adventure story with a medical subplot and a roster of dynamic characters, the most dynamic of whom is Phil himself. If we could harness his energy, our dependence on foreign oil would be a thing of the past… It's not only a memoir of diabetes and an inside look at the world of professional bike racing, but also a story of tigerish determination and the utter resolve to never give up, to win against all odds.” Diabetes Health
“This book is a must read for all of us with type 1 diabetes and for our support team of family and friends as well. Phil Southerland's account of his battle with diabetes and triumph over it seeks to and succeeds at being an educational and inspirational guide for reaching the full potential that exists in all of us.” Showbusiness legend and New York Times bestselling author of Growing Up Again Mary Tyler Moore
“Phil's story reinforces my belief that parenting diabetic kids isn't about numbers. It is about the values that make for creative, active, useful, participant [sic] in life…. One of my favorite lines from the book anticipates being less than perfect. It is brilliant, sage and simple advice, "A key part of being a diabetic is choosing trustworthy friends, reliable friends that you can depend on in a crisis." I submit that is equally true if you take out ‘being a diabetic' and insert ‘life' but possibly more true for diabetics. I think that a similar substitution is true of the book as a whole. It isn't about diabetes it is about life. As such Not Dead Yet is great read for anyone whether they live with diabetes or not…. A great ride. I recommend it highly.” www.ydmv.net
“Not Dead Yet is an uplifting and incredibly true adventure of a young man who beats the odds. Phil Southerland is an inspiration to those who live and struggle with diabetes as well as any individual who faces seemingly unsurmountable challenges.” Steve Edelman, MD, University of California-San Diego, Founder and Director of Taking Control of Your Diabetes
“A very good read.” kellywpa.wordpress.com
“Phil's warm heart comes through particularly strong when he introduces the reader to adults who entered his life and served as role models and supports to both he and his mother. Phil notes, it took a village to raise him… Phil is already a diabetes champion in many senses of the word!” www.hopewarshaw.com
“Phil Southerland has guts…. Although he had the maturity and fortitude to realize that his health is his No. 1 priority early on in life, he has had to work very hard to get where he is. He continues to work hard to achieve his goals, no matter what gets in his way. We give this book two thumbs up! Or two legs pumping, as it were.” www.diabetesmine.com
“My favorite diabetes book I've read in a long time! For starters, Phil is beyond inspiring before you read the book. But within a few pages, any level of admiration and respect you feel for the guy goes several notches... This is a guy who is charming as he is humble (and humbling). But it's not just his personal story of diabetes and love of sports... It's how he leads Team Type 1 (and Team Type 2) into bigger and more ambitious goals to prove that life with diabetes is no reason for us to not catch our dreams.” tudiabetes.org
- St. Martin's Press
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- 6.50(w) x 9.30(h) x 1.30(d)
Read an Excerpt
A Man from the South
Well it’s way, way down where the cane grows tall Down where they say “Y’all”
My name is Phil Southerland. While it’s pronounced “Sutherland,” the spelling of my surname reveals something about who I really am: a man from the South. I was born in the South, raised in the South, went to college in the South, and still live in the South. You can tell, as a “y’all” or two still manages to creep into my speech.
I’ve learned from traveling that a lot of people tend to assume that because you are from the South, sound like it, and, in my case, have a name that practically advertises that fact, it stands to reason that you must be a redneck or a right-wing gun nut. I’m none of these. There is not a Confederate flag decal on my bike or a gun rack on my car. I’m not a reactionary or a racist. And I don’t get all misty-eyed about the Lost Cause of the Confederacy. Heck, I’m not even that interested in the Civil War, even though I’m pretty sure a few of my ancestors fought in it.
While there are southerners who conform to that stereotype, most of the good people I know from south of the Mason-Dixon line are not like that. I have, however, retained some of what I’d like to think are ennobling and civilized attitudes and conventions of being a southerner. I say “please” and “thank you” a lot and call people I meet “ma’am” or “sir.” I do hold doors open for women.
Other southern attitudes have both helped and, maybe, hindered me on my journey. In business, I tend to be a man of my word, and I do believe that there is such a thing as one’s “honor” and that it needs to be preserved. On the other hand, I’m pretty stubborn, especially if I think you’re forcing me to do something that I don’t perceive as right or fair. That’s a southern “thing,” by the way. I know a few folks down here who would even say that’s why we fought that war, but I digress.
My part of the South is a place called Tallahassee, Florida. Yes, Florida. A genuine southern state that has been usurped by snowbirds, Yankees, retirees, tourists, millionaires, and Cuban émigrés. I’m kidding, but really, my Florida has about as much in common with that Florida—the Florida of Disney World, South Beach, and Fort Lauderdale—as I do with Gloria Estefan. That part of the state, amazing as it is, in many ways, and as much as I enjoy visiting it, is a long way in every sense from the Florida I’m from. In the Sunshine State, the farther north you go, the more southern you get. In its mind-set as well as miles, Tallahassee is closer to Valdosta, Georgia than to Vero Beach. “Visitors are struck by how southern the city seems,” according to one guidebook to what is often called Florida’s Great Northwest. “Unlike the more populous parts of the state, Tallahassee is a place where time seems to slow down a bit. People are more easygoing here than in, say, Miami or Tampa. There is an almost genteel sensibility in the air, one that captures the best aspects of southern tradition.”
I think they were right on about that. Talk about tradition. Heck, the name Tallahassee itself means “Old Town,” and indeed it was already an old Apalachee Indian town by the time Hernando de Soto arrived here in the winter of 1539–40. The Spanish built missions here, and a new tribe of Indians, the feared Creeks, settled here in the 1700s, before their settlements were burned by Andrew Jackson during the Creek Wars of the early 1800s. In 1824, the Old Town was chosen as a compromise site for the capital of the new state of Florida. Why? Because it was midway between the Ochlockonee and Suwannee rivers; and midway between the two established towns of St. Augustine and Pensacola. Tallahassee, located at the narrowest point in that part of Florida, became the compromise—and a somewhat unlikely choice for a state capital, located far from any major river or sea. Yet, that decision affected me and everyone else who would grow up there in the subsequent 185 years—because, although it would maintain its southern gentility and despite its location in the middle of nowhere, Tallahassee became a locus of power, influence, and, most important to me, learning. When it comes to higher education, Tallahassee is to Florida what Boston is to Massachusetts. We have two excellent universities and a community college and, when I was growing up, a quality public and private educational system in which there was one teacher for every twenty students, and nearly 65 percent of high school graduates went on to college or technical school.
So you shouldn’t be fooled by the fact that we eat grits and say “sir” and “ma’am” or even by the city’s name, which can be rolled off the southern tongue, molasseslike: “Tahhhl-a-hahhh-seee.” The truth is that, although the pace may be slow, this was, starting back in the 1980s, a shining example of what people were calling the “New South”; a young city, a smart city, and so, not surprisingly, the place where a smart, young couple named Harold and Joanna Southerland settled down in 1980.
Joanna was like many of those who ended up in the Sun Belt in that period. Her native name was Hagan, and she was no mint-julep-sipping southern belle. Born in Philadelphia, she had moved to St. Petersburg, Florida at age five. Her dad, my maternal grandfather, was a World War II vet—he had served in the navy—and had hoped to make it big in the postwar Florida real estate boom, following in the footsteps of his father-in-law. But he never really did. A kind and gentle man whom I vaguely remember, my grandfather did impart an important lesson to my mom that she passed along to me.
“Whatever you do in life,” he told my mom, in one gut-wrenchingly pained and honest moment, “for God sakes make sure it makes you happy.”
Clearly, what he had done, with moderate success, had been paid for with the price of a miserable life. My mom initially interpreted her father’s message as “have fun.” Which she apparently did at college in the late 1960s. But when she graduated, she ended up finding a job in the most unlikely of places for someone of her independent spirit and liberal views: a steel company. This was pretty funny for a woman who had by her own admission partied her way through four years at the University of South Florida, then traveled for an extended postgraduate European hippie trek, returning to the United States with exactly twenty-five cents in her pocket.
But attractive, young, college-educated women were in demand in the business world in those new ERA-conscious 1970s. Joanna worked for a succession of major steel corporations, traveling to Europe and Japan on sales and marketing calls. She would return periodically to Florida to visit her family and friends, including one who had moved to Tallahassee—which my South Florida snob-mom dismissed as “a redneck southern town” (yes, just as those who were born in northern Florida are proud of its southern leanings, so the folks in South Florida look down when they look upstate).
In Tallahassee, a young Florida State law-school professor lived next door to my mom’s friend. One day in 1978, he and Joanna started chatting. “He knew all about Flannery O’Connor and I was impressed,” she recalled. “At the time, I was hanging out with guys from the steel industry and all they knew about was Budweiser.” This guy was also a marathon runner, caught up in the 1970s running boom, which was then reverberating across the nation. Distance runners were cool and sexy and mostly male back then; and Joanna was impressed. And unlike Joanna, this gentleman was from a family whose southern roots were as deep as those of magnolia trees, as was evidenced by the young man’s almost comically archaic name: Harold Philpott Southerland, Jr.
He couldn’t stand “Harold,” and of course no one, not even someone from the Old South, could go around in the late twentieth century with a name like Philpott, so he was called Phil. (Philpott, by the way, wasn’t really a first name at all, but rather the family name of his paternal grandmother.) Phil Southerland, my dad, grew up in Huntsville, South Carolina. He attended West Point, did his mandatory service hitch just before Vietnam heated up, and then attended law school at the University of Wisconsin. After graduation, he went to work for a conservative Milwaukee law firm, but he got the boot when he started defending draft dodgers. Looking back, you have to admire his chutzpah. A West Point–educated lawyer defending draft dodgers! It revealed an independent, nonconformist streak combined with the time-honored southern virtue of doing what you felt was the right thing, even if it wasn’t necessarily the best career move. From there Phil went where really bright mavericks often go: academia. He took a teaching job at Florida State University’s College of Law, which is how he ended up in Tallahassee, charming—with his intelligence, good looks, and reading list—a pretty, young lass sixteen years his junior.
Joanna wasn’t the only one impressed by Phil. “He was the kind of professor students loved,” she recalled. “Eccentric, brilliant.”
And, as it turned out, an alcoholic, whose condition started with a couple of drinks before dinner and got progressively worse. To his credit, my dad would later address his alcohol problem and beat it—as daunting an achievement as anything I would ever face. But in those early years, his manic personality drove Mom crazy. It wasn’t only the drinking; as she tells it, he was a man of extremes, often swinging wildly from one end of the spectrum to the other. He stopped marathon running, for example, and instead took up … chain-smoking. I guess it didn’t help things when I came along. Because what happened then was enough to drive any parent to drink.
* * *
I was born on January 15, 1982. From early on in my life, they talked about my baby-blue eyes. They still do. But Joanna saw through that.
Even though I was her first child, Joanna sensed within a few months that there was something wrong: her baby wasn’t eating, he was losing weight, and his diapers were always soaked.
Joanna was confident; a bit high-strung and nervous sometimes, concerned about the man she had married, maybe; but sharp-witted and strong. Nonetheless, she was scared. She took me to the pediatrician.
There was something wrong, she insisted.
Nothing wrong, the young pediatrician replied.
“Then why is he losing weight?” she asked, after one week in which I’d lost three pounds.
“Sometimes they do that,” he replied.
The situation worsened over the summer. At one point, I started nursing constantly. Joanna called the doctor. “He’s probably teething,” was the response.
Two nights later, she took me back to him to find out why my breath smelled fruity. He really had no answer.
But over that weekend in August 1982, I began to pant. A horrible sound that made it seem like I was running out of life, already. And for one terrible moment, when Joanna went to attend me, I looked up at her with bright blue eyes—eyes that had only just begun to fix their gaze on the still-new world around them. Those eyes were starting to turn a cold gray—and behind them was an unarticulated but unmistakable cry for help.
She looked into those eyes and saw death. Horrified, she alerted Phil and called the emergency room. “It’s probably a flu,” said the physician on the other end. “Bring him in.”
As they scooped me up, Joanna made one more call: to the pediatrician. “You said it was nothing,” she said between sobs. “Well, I’m taking him into the emergency room. You can be there or not.”
And with that she wrapped me up and rushed me off to the hospital. There, I was examined. My weight was fourteen pounds, down from twenty-four just a week earlier. I was dehydrated, they said, and put me on a glucose IV—as it turned out later, that was the worst thing that they could possibly have done to me. Within minutes, as Joanna hovered over my bed helplessly, I grew limp and still and began to emit a sickening wheeze. “A death rattle,” she recalls today (and believe me, it’s scary to hear about this kind of stuff happening to any little baby, but especially when that little baby was you). Panicked, she ran into the hall, calling for help. Orderlies, nurses, and a doctor came rushing in and hovered around the child’s bed. “Is he going to die? Can somebody tell me, is he going to die?” cried my mom.
No one could tell her.
They were trying different things. She saw what appeared to be an uncoordinated symphony of hands poking, sticking, and pricking me with various instruments. But again her mother’s intuition sensed what they couldn’t, almost as if I had sent out a distress signal directly to her. “He was going fast,” she recalled. “I could feel it … he was dying.”
At that point, she was politely but firmly ushered from the room. Never a religious person, Joanna then did what most nonbelievers do in a life-or-death crisis: she asked for forgiveness and began to pray. They say there are no atheists in foxholes or emergency rooms.
She still remembers it vividly. “It was dusk, and I will never forget the lighting,” she told me. “The sun setting behind the steel bars of the pediatric baby bed.” It must have appeared as the sun setting on my life. For the next two hours, my father sat in a chair, squeezing the arms until his knuckles where white. Joanna paced so much that the young nurse finally told her she’d be better off if she just tried to sit still. She left, went downstairs, and called her priest.
Joanna was raised a good Catholic girl. Like many of her generation, she had strayed, finding the church too restrictive and in some ways sexist. Now, she wanted to call on the power of the almighty, but at the same time, my mom—bright, rebellious, independent, and now heartbroken—could not rationalize it. Why ask the Lord to save me when he was killing me?
“Why does God do this to a baby?” she cried into the phone. “Why not a mass murderer … someone who deserves it? Or why not me … or his dad … why an innocent baby?”
He probably gave an answer. But not one that made any sense to her or eased her suffering. As far as she recalls today, “The priest had no answer.”
That was the end of her Catholicism.
Two hours passed in a blur. The doctor came in—not the young, self-confident doctor but an old, courtly southern physician. She remembers it was late afternoon when this happened. There were autumn shadows peeking through the half-drawn blinds of the little waiting room. The late-afternoon sky was a pinkish color, an apt metaphor for what she sensed was the darkening of her own life, a life that she was sure would be spent forever lamenting the loss of her firstborn.
The doctor spoke. “I’ve got good news and bad news,” he said.
She braced herself. After what seemed an eternal pause, he continued. “The good news is that he’s going to live.” Joanna didn’t care about the bad news, initially so overjoyed by the surprising report that she began to weep. She barely heard the rest of what he had to say.
“… But he has diabetes. The youngest case of juvenile diabetes we’ve ever seen.”
Diabetes, she remembers thinking. Something about sugar and insulin. Injections, right? No candy bars for her son, she supposed. Regrettable, sure, but he was going to live. Thank God. Then, the other shoe fell. There was more bad news, delivered not that day but a few days later, once a specialist had been called in. He was blunt in his assessment: “The statistics on children with juvenile diabetes this young are grim.” Based on then-current care and technology, he predicted that “after twenty-five years, he’ll probably be blind and suffer kidney failure—that is, if he’s still alive by then.”
The dour prospects were based on a scientific truth: high blood glucose levels can end up killing certain cells in the eyes and kidneys, which is why diabetes is the leading cause of adult blindness and of kidney failure. Still this was some prognosis for a young mother to hear about her baby.
Sightless, on dialysis, in all probability dead by twenty-five.
She listened, her jaw set. This time, her reaction wasn’t tears. It was quiet, simmering anger, a steely resolve. Her baby boy had survived. And just as surely as she had thought he was about to die that Sunday afternoon in the hospital, she was now equally sure that he would live and continue to live. The maternal instinct that had told her there was something wrong with her child, despite what the first doctor had said, was now channeled into determination to prove this specialist wrong. “Dead by twenty-five, eh?” she said. Not if I have anything to say about it! You don’t, was the response; there’s not much you can do. Oh yes there is, she said to herself, driving home that afternoon with her baby. Oh yes there is. There are days and months and years of things I can do. There are books to be read, opinions to be gathered, lists to be made, friends and neighbors to be mobilized. There are things we can do. Exactly what, she wasn’t quite sure at that moment, but she would figure it out. She drove home that afternoon through the rows of cypress trees, past the stately homes and the bustling college campus; back to that “redneck southern town” of Tallahassee, Florida. A town whose merits she would soon be forced to reconsider, for the better.
She looked around at the campus, the hills, the trees, the houses. Her son would live to experience this, she vowed to herself. All of it. Diabetes or no diabetes. I owe her my life for that.
* * *
Let me tell you a little bit about the disease that affects me and about 25 million others in the United States alone.
My problem starts with my pancreas, a cone-shaped organ most of us probably couldn’t even locate on an anatomy chart. Even more specifically, my troubles began in an area of the pancreas that has one of the most colorful and imaginative names of any part of the human anatomy: the far-flung “islets of Langerhans,” which sounds like someplace that Frodo and his friends would have visited in their quest for the Lord of the Rings. Named after the German scientist Paul Langerhans, who discovered them in 1869, it is really a clever appellation for a cluster of about ten thousand cells located in the tail of the pancreas. Amid these cell clusters are beta cells, which function as the microscopic factories that produce insulin—a key hormone in the metabolism of glucose.
Insulin is important because it allows glucose to move from the bloodstream into body’s cells to be used for energy. People with type 1 diabetes are their own worst enemies. For reasons that we don’t understand, my body’s immune system has attacked and destroyed its own insulin-producing beta cells, resulting in dangerously high levels of blood glucose.
This is the “sugar” part of diabetes you’ve probably heard about. It’s interesting how they first figured this out. Centuries ago, they used to take the urine of someone suspected to have the disease and pour it on an anthill. If the ants flocked to it, they knew there was sugar in the urine. In the eighteenth century, the Latin term mellituswas added to “diabetes,” referring to the sugary taste. But it wasn’t until a century later, in 1889, that two German scientists discovered that the pancreas was involved with diabetes. As part of an experiment they removed the pancreas from a dog and found that afterward it urinated again and again. They tested the dog’s urine for glucose and discovered that it had developed diabetes—because of the removal of its pancreas.
Something in the pancreas prevented most people from having diabetes. But what? For the next few decades scientists tried to find this magic substance. In the meantime, people tried all kinds of methods to keep diabetics alive. None worked, especially with juvenile diabetics. No doubt, had I been born sixty or seventy years earlier, I most likely would have died, just as the doctor had predicted to my mom. In 1921, a young Canadian doctor named Frederick Banting, fresh out of med school, had an idea. He suspected that cells in the islets of Langerhans played a role; that something in the cells of the islets (or “isles” as they’re also called) secreted a substance that was the key to diabetes. He was right—that substance was insulin. Working in the lab of Professor J. R. R. MacLeod at the University of Toronto, Banting was able to isolate it and, with the help of a biochemist, purify and then inject it into a fourteen-year-old boy dying of diabetes. Although already weakened by years of the disease, the young man survived, and with regular injection shots lived for fifteen more years, until he died of pneumonia.
At last, diabetics had hope: something could keep them alive.
In 1923, Banting and MacLeod were awarded the Nobel Prize in Medicine for their discovery of the role of insulin in treating diabetes. (Wanting to give credit where credit was due, the two of them shared the prize with the biochemist, which was a pretty stand-up move, don’t you think?)
In the years since, treatment for diabetes has continued to improve. The incidence of the disease, however, has reached epidemic proportions. Here we have to make a distinction: my disease comes in two types. You could call it Diabetes Classic and New Diabetes, and that might be funny, if it weren’t for the fact that the rise in the new form has been truly alarming and, unlike my type, largely preventable.
According to the American Diabetes Association, my kind of diabetes—type 1, or juvenile diabetes, which results from the body’s failure to produce insulin—accounts for only 5 to 10 percent of the cases diagnosed. The vast majority, and this is where the big increases have come, are type 2—the so-called adult onset diabetes; a form of the disease in which insulin resistance, not deficiency, is the problem. Type 2 is often lifestyle related, with obesity being a big factor.
The ADA estimates that there are now 23.6 million people in the United States with diabetes. That’s almost 8 percent of the total population of the country! And it’s growing: more than a million new cases are diagnosed each year, most of them type 2. The good news is that the prognosis for children diagnosed with type 1, even at very young ages, has vastly improved in the past decade. A 2006 study in Sweden tracked type 1 children over a period of years and found that not a single child developed end stage renal disease, which is what frequently ended up killing people with type 1 in the past. “That’s profound,” says Jeff Hitchcock of the organization Children With Diabetes. “It means that our kids will die with diabetes, not of it.” (And when Hitchcock says “our kids,” he means it. His daughter Marissa was diagnosed with type 1 at age two and is twenty-three at this writing, and healthy.)
That is a sea change. Meeting the kids that I do at diabetes camps every summer, knowing they can all have a future; a real future, and become whatever they want to be, fills me with joy. It’s a far cry from what my mom was facing. Remember, when Joanna was getting the news about me, it was 1982 not 2010 and while things had already changed since the days when a diagnosis of juvenile diabetes was close to a death sentence, there were still no guarantees; and few of the physicians she went to were talking about me having anything resembling a “normal” life. The best that could be expected is that I would survive, not really live. A life of injections and restricted activity; a life limited by a cluster of malfunctioning pancreatic cells.
My mom learned all this in the weeks and months after I was born. Remember, the average age for diagnosis of type 1 diabetes is fourteen. I was seven months old when they figured out that I was diabetic—one of the youngest cases ever diagnosed. Of course, had I been born a few decades earlier, I would have had no chance. But even in the 1980s, when diabetes treatment was already well understood, my odds for living a long and healthy life weren’t great. (Losing one’s sight is still a concern for diabetics: the ADA estimates that the disease is the cause of twelve thousand to twenty-four thousand cases of blindness each year.)
That was the future Joanna was being asked to accept: your baby boy, quite likely blind and quite possibly dead by twenty-five.
Once she had recovered from the shock, once she was done with the “why me, why my baby?” stage, Joanna got ready to fight back. She knew that diabetes could be managed—meaning that by proper attention to diet and monitoring and taking injections, you could increase the odds of survival and good health. She resolved to do everything she could to manage my diabetes by making my childhood as “normal” as any childhood could be. I wasn’t going to get singled out, treated like easily breakable china, or quarantined. Yes, there would have to be changes and modifications in the way we did things. But Joanna wasn’t going to let diabetes stop us from being a family or me from being a kid.
Here, what she had originally dismissed as that “redneck southern town” of Tallahassee became important. Our neighborhood, in the Piedmont Park section of the city, was composed of mostly white-collar families, and many of them worked at nearby Florida State University. It was a fairly cohesive place in the early 1980s; not like the Sun Belt suburbs I see today, where so many people are transplants and nobody really knows anyone else. Many of the people we knew had come from somewhere else even then, but we knew them, they knew us, and when news got around that Joanna Southerland’s baby was diabetic, they were ready to help.
Believe me, my mom didn’t waste any time in taking them up on it.
“Some people are afraid of asking for help,” she says. “I’m not.”
Joanna drove all over the state, to clinics, symposia, to diabetes-management centers, and made herself an expert on my condition. She went to neighbors and talked to them about the disease. She wanted them to know what was going on if they ever saw an ambulance at our house. And particularly, to those with other small children, she wanted them to know what to do in case I ever had a seizure.
It’s interesting how a diagnosis like this affects parents.
My mother got mad, then got motivated, educated, and went on to mobilize the neighborhood.
My father tried to do his best, and as a capable, intelligent man, his best can be pretty good—but not at that point in his life. My diagnosis sent him into a spiral, and he would soon hit rock bottom.
* * *
About eighteen months after I was born, my mother took me to the University of South Florida in Tampa, where they had a good pediatric endocrinology unit. Here were physicians who knew kids and knew diabetes.
We spent the day there, as they examined me and did a battery of tests. I think it was a bit of a test for my mom, too—one she intended to ace. She’d already started marshaling her resources to combat this disease. She was staying up nights to monitor my blood sugar. Giving me shots. Organizing my diet and treatment. She was determined to prove wrong the doctor who had predicted blindness and kidney failure. She was determined to show these guys—the hotshots at USF—that she was a mom who was on the ball and was doing everything humanly possible to ensure that her son was going to live a long, healthy life, despite the early diagnosis of type 1.
She succeeded. At the end of the tests that day, the head physician reviewed the paperwork and looked up at my mom. “He’s doing really well,” he said. “You couldn’t be doing any better than you are now.” Joanna beamed as the older doctor shook her hand, then left the room. My mom said she was ready to celebrate, ready to give herself a slap on the back, when she noticed that a second doctor, a younger man, who was doing his residency or internship at the hospital, had remained behind. “He’s right,” said the younger physician. “Your son’s doing fine.” He paused. “But you’re going to have a nervous breakdown.”
As my mom recalls, she immediately crumbled into tears. “I know,” she said, through the sobs. “My husband’s an alcoholic.”
There it was, out in the open, admitted to a stranger no less. My father, the brilliant, charismatic, idealistic, well-read law professor was an out-of-control drunk.
Joanna knew it, but she was so wrapped up in caring for me that she hadn’t really faced the issue. But it was clear that father Phil was going down. A few months after I was born, he lost his license and had to take the bus to the university every day. Another time, my mom got a call from her friend and neighbor Iris Yetter. Iris had been driving down our street when she saw me running around the driveway in my diapers, unattended. She stopped, got me safely back into the house, and immediately called my mom. Joanna was furious. I was supposed to have been watched by my dad that day. But he was inside the house, drunk, and I had managed to get out. Good thing I didn’t go toddling into the street.
Joanna finally confronted him. She recalls standing in the driveway the morning we left for Tampa, pleading with my dad to stay sober while we were gone—as if he were a frat boy who had a tendency to down a few too many. “‘Please, don’t drink,’” she recalls saying to him. “Kind of a ridiculous request, I realize now. But at the time I had no idea how bad his problem was.”
We found out later how bad. No sooner had my dad sworn to his wife that he wouldn’t drink while she was away, having her diabetic son examined in a hospital, than he walked up to the liquor store with a briefcase, which he proceeded to fill with bottles of vodka. He was lugging this briefcase of booze home when a neighbor spotted him walking, picked him up, and drove him home. The neighbor (who later relayed this to Joanna) noticed the bottles sticking out of his bag. I’m not sure what my dad was thinking—that somehow his lawyer’s briefcase would provide immunity for the Stoli bottles peaking out the top? The answer is that in his state, he probably wasn’tthinking.
At about this time, several hundred miles away, my mom was hearing the words of truth spoken to her by the resident.
According to Joanna, when she started crying, admitting to the young doctor that her husband was an alcoholic, he went on to speak to her directly and in no uncertain terms.
“Then you’re just going to have to leave him. You cannot take care of a diabetic and a drunk.”
Obviously, no physician today would step over the boundaries of medicine to family counseling, for fear of lawsuits by patients or censure by some medical board. But my mom swears that this is exactly what he said to her. “I’ll never forget it,” she says of this day. “I realized that this stranger … the young physician … was right. I had given up my career. I was totally dependent on this man for finances and for the well-being of myself and our child and he was out of control.”
The whole thing with this young doctor seems a mystery to me. She had never seen this man before, and efforts to reach and thank him later were fruitless. No one at the medical center seemed to know who he was. If I didn’t know my mom better, if I didn’t know that she values truth and honesty and accuracy, I would swear that she imagined the whole thing. But I know she didn’t, which is what makes it so strange. It seemed almost as if this physician had been inserted as a plot device in her life, like a playwright deciding that a Greek chorus was needed at this very point to help the audience better grasp a character’s motives, or to move the story along.
Which it most certainly did, because instead of driving back to Tallahassee, Joanna decided instead that we were going to my grandparents’ house in St. Petersburg. There, she would deliver a long-distance ultimatum to my father. My grandmother—Joanna’s mom—was happy to see us. Because she had always been suspicious about my dad’s drinking, and sensed that there was more of a problem than anyone was admitting, she fully endorsed what my mom did that night.
Joanna called my dad and said, “I’m not coming home unless you quit drinking.”
At this, my dad went off on a real bender. The way I heard it, he got into the shower … why the shower I’m not sure … and proceeded to drink until he was comatose. My mom, concerned that before long I wouldn’t have a father, called a friend who had once been a drinking buddy of my dad’s and was now in Alcoholics Anonymous. This fellow was on his way to Europe on business, but he promised my mom that he would get someone over to our house in Tally to help my dad. He did, and they managed to get my dad into a detox center. From there, he went into Alcoholics Anonymous.
So, something positive did come out of this whole awful chapter in our lives. My dad would survive and make a pretty incredible turnaround as he successfully fought his addiction, becoming clean and sober from that point on.
The relationship between my mom and dad was doomed, however, although it would take two more miserable years to finally end.
My dad became immersed in AA. Joanna went to meetings, too, but before long, as she says, “I was Big Book–ed out,” referring to the tome that folks in AA read for inspiration and to help keep them from succumbing to temptation. While my mom was home taking care of me, my dad met a woman in his meetings. She, too, was struggling with alcohol, and I guess he felt that she was someone he could connect with better. Before long, as I saw it through young eyes, he started to be around less and less. And when he was, I remember some screaming-bloody-murder arguments between him and my mom.
At some point, probably when I was four or five, Phil Sr. decided to leave Joanna permanently. According to my mom, when he left, he cleaned out all the bank accounts, leaving her with twenty-five dollars. Not even enough to buy insulin for me. One of our wealthier friends heard about it and got so incensed that she told Joanna to go out and hire the nastiest divorce lawyer in Tallahassee, and she would pick up the tab. Joanna did just that. The hotshot lawyer turned out to be a “she”—somewhat unusual in mid-1980s Florida—who immediately filed an emergency motion for support. The lawyer laid out the case, described my illness and how my mom had put aside her own career to devote her full time to raising a diabetic son. The judge awarded Joanna about three-quarters of Dad’s salary, so at least she could keep a roof over our heads and insulin in my veins.
One Phil Southerland was now out of the picture. Between diabetes and divorce, the other Phil Southerland was going to have to grow up fast.
Copyright © 2011 by Phil Southerland and John Hanc
Meet the Author
PHIL SOUTHERLAND is the founder of Team Type 1, a team of championship bike racers. He and Team Type 1 have been profiled in numerous cycling and diabetes publications, the New York Times, the Washington Post, the Wall Street Journal, and the Atlanta Journal Constitution. He lives in Atlanta, where Team Type 1 is based. Visit him online at www.teamtype1.org.
JOHN HANC teaches writing and journalism at the New York Institute of Technology. He is a long time contributor to Newsday and a contributing editor to Runner’s World magazine, as well as the author of The Coolest Race on Earth. He lives with his wife and son in Farmingdale, New York.
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