Lilly Banks Still Hits Better than You

 

As part of my effort to raise money for the Juvenile Diabetes Research Foundation, I often have the pleasure of talking to young people who have been diagnosed with type-1 diabetes. It’s not a topic that lends itself to pleasant conversation, but people like Lilly Banks and Adam Kavka display an impressive resolve, and provide a sense of the balance so many type-1 individuals develop in the face of a challenging disease. 

(I will cover Adam’s story in detail here: viall4diabetes2011.)

YOU CAN DONATE TO JDRF HERE.

As some people know, I am planning to pedal across the United States, for a third time. In the first leg (April 30-May 20), starting from Acadia National Park, I did cover 1,200 miles. That’s too slow, I admit. 

And I almost got moldy since it rained sixteen days out of twenty-one. Still, that’s not as hard as being diabetic for a week. 

So let’s consider Ms. Bank’s story in some detail. I wish I could have recorded our interview (but I am 75, and have the technological skills of a five-year-old). She was diagnosed last November 15, at age 16. I learned that she’s a serious high school softball player, and used to play a mean game of soccer too. She’s met physical challenges before. And she’s not afraid of diabetes. 

“Small, but mighty,” as her mom, Joey, describes her.

 

Lilly is also funny. I laughed repeatedly during our conversation, even though no one would imagine discussing a lifelong health issue would lend itself to humor. First, we focused on softball. Lilly said she wasn’t sure, but thought her current batting average was .430 or .450, probably third on her team. She plays middle infield, as well as outfield, wherever coaches need her – mostly outfield, lately. She’ll be a junior next year, and her dream is to play for Kentucky in college. I asked what the best part of playing ball was. “Just the connections, with friends,” she said. She also played regular baseball when she was little. I told her, in 1974, girls had to sue for the right to play Little League ball – in the “good old days” when girls who were serious about sports were seen as aberrations. I told her, if she had to go back to the 60s, when I was in high school, she’d have to kill people because of the way young ladies were treated. 

I can assure you, though. Lilly has no plans to kill anyone. Like I said, she’s funny. Not bloodthirsty.

 

On a serious note, I asked what it was like when she was first diagnosed. Her story reminded me of our family’s response, when Emily Viall, our daughter, learned in 2005 that she was a type-1 diabetic. Lilly and her parents made the dreaded trip to Children’s Hospital one evening, and time passed, and it grew late. She remembers feeling tired, and remembers the doctor delivering the unwelcome news. “This is going to be for the rest of my life,” she remembers thinking. Her mom was heartbroken. “I could see it in her face,” she added. Her parents were “devastated.” Asked about all the work involved in dealing with being type-1, she says her mom “hates it as much as I do.” 

I remember crying, when our daughter was diagnosed, and don’t think my wife Anne fully regained her composure for at least a year. 

Talking to Lilly brought back a rush of memories. 

So, what happens to a person like Lilly, when they get that *$#&#@! news? Lilly says the challenge has made her push harder on a number of levels. She’s decided to switch high schools next year, and attend Butler Tech. She plans to focus on medicine, and hopes to become an endocrinologist. She told me she had just been “fitted for scrubs,” a few days before, and it “made me so happy.”

 

And that’s what I’ve found, having a child with type-1 diabetes, and talking to others. These young folk develop steel in their character. Lilly, for example, has already learned how to handle the challenges of daily care. She has a good boyfriend, who has an app on his phone (Lilly’s mother, father, and brother, Gage, all do, too) which signals if she’s going low. In first period class, one morning, her blood sugar started dropping, and her pump started beeping – which she found embarrassing – but her boyfriend, who goes to Fairfield High School, messaged her and told her to make sure to eat some Skittles. Her dad, Josh, texted too. She remembers sweating, and getting shaky, and had to head for the school nurse’s office. But as Adam Kavka could tell her, or our Emily, care for type-1 diabetics has improved dramatically in the last fifteen years. So that’s a hopeful sign. 

Only: It’s still a daily challenge. 

Lilly has to worry about her infusion site while playing softball – and it struck me that if she dove for a catch in the outfield, she might land on her pump and knock her system out completely. She says at prom this year, she managed to rip out her insertion site, while dealing with her dress, and spent the rest of the evening in type-1 limbo. “It sucked,” she admitted with a wry sense of humor, and then laughed. In fact, her self-deprecating humor was part of what struck me most. Clearly, Ms. Banks was going to deal with diabetes, in part, by mocking the challenge and then overcoming it. I asked if diabetes had affected her ability to play ball. “A little,” she admitted. One day, however, when she came up to bat, she said, “the other team was talking trash.” She stepped out of the batter’s box, stepped back in, and then drilled a pitch to left. 

A teammate piped up, directing a gibe at the other team’s bench, “She’s got type-1 diabetes, and still hits better than you!”

 

I can’t copy Lilly’s storytelling here, as a better writer might, but I laughed so hard, I could hardly ask her another question. 

I did ask, eventually, if she felt I was intruding with my queries. “No,” she said, “this is the most ranting, I’ve ever done.” 

I felt good, if I could help her blow off steam, and told her she didn’t sound like she was really ranting. I told her that I had been in the Marines, but if I had to stick myself with needles all the time, I’d be cursing every day. I suggested she try cursing herself. (Jokingly, mom and dad. Only joking!) She does admit that when she first heard her diagnosis, “I didn’t think it would be so much work.” To start, her mom did a lot of the checking of numbers and sticking of needles, and that helped. Mom, Lilly says, “has been very supportive.” Her whole family has. Her friends, too. “We can joke about it,” now she says. 

I laughed hard again when she said that when her boyfriend heard she had type-1 diabetes, he thought she was joking. 

“Yeah. Ha. So funny! I’ve got a lifetime disease!” I replied. We both laughed at that absurd image. 

But her boyfriend is solid; and Lilly is not going to be thrown off by challenges. She’s learning about diet, what foods work, which ones don’t. “I know it’s going to be frustrating,” she admits. “I get so mad, sometimes.” Then she adds, “It really opened my eyes.” 

I asked if she was a good student. “I think so,” she said. She explained why she was now so interested in medicine. She said she felt she’d be “relatable” to patients. She wants to make a difference in others’ lives, and in talking to her, I came away convinced she would. I finally let her go, after a few last questions. “How did you and your boyfriend meet?” since they didn’t go to school together, I wondered. She says they started talking online. He told her she “looked familiar,” and that’s how conversation began. 

I told her I thought that sounded like “a good pickup line,” and she laughed and said, “Now I’m starting to get the picture.”

 

So there you have it. Lilly is sixteen, new to the life of a diabetic, but well prepared to meet any challenges. I’ll look for her in a Kentucky uniform in a couple of years. And if she has to dive to her right to stop a ground ball while playing shortstop at the college level? 

Well, the young lady is going to dive. 

And she’s going to grab it, leap to her feet, and throw out the runner. She’s going to beat type-1 diabetes, as well.

With type-1 diabetes, the whole family is involved.

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Battling and Beating Type-1 for 53 Years: Pattie Spicher

Ray (nickname: Baby Beef, left), Pattie, right.
You know what joke is coming.

“Am I Blessed or What?” 

When I asked Pattie Spicher to sit for an interview, I knew she’d have a tale to tell about dealing successfully with type-1 diabetes. I first met Pattie in 1972, when she married Ray Spicher, my high school friend. By that time, she had learned, at age 20, that she had “adult diabetes,” as doctors then labeled her condition. 

Pattie was petite – and still is – but neither she nor Ray could have imagined how complex the journey ahead would prove. 

I had been discharged from the Marines by that time, so I wasn’t exactly a wimp. But Pattie, like every “veteran” diabetic I have ever known, has proven herself way tougher than me. 

If someone you love is new to this life-altering diagnosis – that they are type-1 – I believe Pattie is an inspiration. She has persevered and with “God’s help,” as she says, has led a full life, filled with joy. That’s the first lesson from her tale. Pattie will tell you being type-1 is “a pain in the butt.” There’s still no cure, so you’ll always have to watch what you eat. And you can’t wish the disease away. Like Pattie, you have to set your mind to the challenge and do the best you can. 

To Donate to JDRF, please click here.

When she was first diagnosed, care was primitive by today’s standards, and she was informed she could never have children. One doctor told her she might die before she turned thirty. At first, her medical condition was misdiagnosed. For over a year, no one thought to start her on insulin. They believed she had what today we would call type-2 diabetes, an increasingly common health problem in this country, as the average American’s eating habits grow worse and worse. 

In those days, all Pattie could do to test her blood sugar levels was pee on strips, like those pregnancy tests. If the strip turned bright green, that meant sugar levels were high. All she could do to lower her levels, or so doctors believed, was “take a walk” or skip a meal. “They would starve you,” is how she explained it, and compared treatment in the early 70s to that of Thomas Jefferson’s wife. Experts now suspect Martha Jefferson died in 1782, from the complications of type-1 diabetes. So Pattie tested and did her best. She stands five-and-a-half feet tall, but her weight plunged from 110 to 90. 

Pattie on her wedding day - 1972.

If you know the history of type-1 diabetes, until a hundred years ago it was an early death sentence if your immune system had been compromised. Insulin was not discovered until 1922, and Pattie was learning about the disease forty-nine years later. Now she’s been dealing for fifty-three years. 

And here’s the second lesson to ponder. She has seen miraculous improvements in how doctors help patients approach their new lives, and that’s why she says she’s “so thankful for JDRF.” As all who have loved ones afflicted with this disease learn, the Juvenile Diabetes Research Foundation has been leading the search for a cure, and funding research into better treatment, for many years. 

In her case, once it was understood she had what was then called “juvenile diabetes,” she was finally put on insulin, and instructed on how to give herself shots. She had a chart to hang in the bathroom to help her keep track. Shot in the left arm one day, right arm the next. Left butt cheek, right butt cheek, left thigh, right, and a shot in the stomach for “fun.” Then start all over again. 

As I said, I had been in the Marines, and knew how to curse; I’d have got about as far as the first tender cheek, and I’d have started f-bombing the world. Pattie will only admit she was “mad,” but also said she was determined diabetes wouldn’t beat her – and, as we know now, it could not.

 

In Ray and Pattie’s life, one of the great hurdles that had to be cleared was that they badly wanted children. But in that era, they were admonished that it would be dangerous for Pattie to try. They talked to Catholic Charities about adoption; but when the charity followed up with Pattie’s doctors, on why she couldn’t have children, they told the charity folks that she might die early, and it wouldn’t be fair to place a baby with the Spicher family. So it seemed parenthood was out. 

In those days, Pattie worked at a women’s clothing store called “5-7-9,” for the sizes they sold. It was in a mall. 

When people still loved malls! 

One afternoon, God took a hand. A customer came “almost floating in,” Pattie remembers, and told her he was shopping for his wife. She helped him pick out something nice and asked about the occasion. “My wife just found out she’s pregnant, and she’s a type-1 diabetic,” the man replied. “So we’re both thrilled.” 

When Pattie said she was type-1, too, he told her about a study being conducted at the University of Cincinnati, gave her the name of  Dr. Harvey Knowles Jr., and left with a gift for his wife. 

Pattie told her boss she was leaving work immediately, drove home, used the land line (this is back in the day), and called UC to get the information she needed. 

Knowing that pregnancy was possible, and having been enrolled in the study, herself, she and Ray decided, “We would put it in God’s hands.” In 1976, she got pregnant for the first time. As she told me, in those days, the only ways to test your blood were to use the urine strips or draw blood, which was most accurate. So, during her pregnancy, she had a pic line put in one arm. She was told she’d have to spend a week in the hospital during the first semester, a week during the second, and the entire third trimester in a hospital bed. 

“I wasn’t sure I could do that,” she said in deadpan fashion, “because I really don’t like hospitals.” 

I had to laugh.

 

So she “solved” that problem by having her first son, Scott, at 28 weeks. He tipped the scales at three pounds, three ounces. 

“Three pounds, three ounces!” I said. “Whoa.” I had been premature myself, and my mother had eight miscarriages in eleven tries. So I knew that for Ray and Pattie, this must have been a terrible shock. 

“Wow,” I added. “I weighed four, five.”

Children weren't supposed to be an option.
Scott, left, decided to arrive early, Nick, right followed five years later.

Pattie is lively, and loves to talk, but had difficulty continuing. Doctor Knowles, she gulped, “was the best endocrinologist ever.” She switched a moment to talk about when her second son, Nick, was on the way in 1982. One day, Knowles told her during an office visit that he was “so excited.” There was a new machine, he said, adding, “There will never be another invention like this, ever!” You had to draw blood, and you placed it on strips, and calibrated the machine high, and draw blood and calibrate it low, and because she was in a study, they gave her a machine to take home. At first, it was about 8 x 10 inches. You had to fumble with the strips, and wipe them off after you touched them with blood, then use a stopwatch, also provided, to know when to check results. “Pattie,” Dr. Knowles had assured her, “there will be nothing to top this in the next twenty years.” In fact, it was only then, after several years of battling diabetes, that she could finally get real blood sugar numbers, an “actual number, 112, or whatever it might be.” The first machine she was given was “like six days old,” because she was in the UC program, and you couldn’t lug it around, of course. So she and Ray had a table set up at home. By the time she had Nick, the machine had been reduced to 5 x 7, and you didn’t have to calibrate it yourself. 

“It was amazing how fast things moved,” she said.

 

This writer’s family has seen great improvements in care, as well, watching our youngest daughter handle diabetes, starting in 2005. So far, Pattie’s story tracked positive, as Emily’s has. So I asked to go back to Scott for a moment. “So, he’s so small, you have to be worried about his overall health…” 

“Don’t even talk about it,” she replied, choking up a moment.”  

And Dr. Knowles,” she finally continued, “was so awesome.” He told Ray, with that first pregnancy, “If they come running out of the delivery room…” and she laughs at her emotion, and wipes away tears. “If they came running out of the delivery room, then he would know there had been trouble.” 

At that, she starts crying. “I still cry,” she admits, “and in fact every time I call Scott on his birthday I start crying again, and he just says, ‘Mom are you ever gonna get over this,’ and I say, ‘No,  Scott, I’m never gonna get over it.’” 

In those days, Ray was coaching baseball and teaching at Hughes High, and many of his students were poor. He often had to pick players up at home at 6:00 a.m., so they could practice before classes. One day, her water broke, and she called her sister for a ride to the hospital. Scott couldn’t go home until he weighed at least five pounds. So Ray would come up to the room after work, and see her, and being “dog-tired,” fall asleep in the bed. 

But they didn’t come running out on April 8, 1977, when Scott the Giant crashed the party of Life. “I thank God every day,” Pattie says, and her faith is strong. “Am I blessed, or what?” she adds.

Had care for diabetics not improved, Pattie wouldn't be here.
Nor would her seven grandchildren.

 

Here then: another lesson. I think most families of type-1 diabetics learn that it makes everyone involved stronger in all kinds of ways. It steels people with resolve – as it did Pattie and Ray. Her husband went on to become a highly-respected principal in the Cincinnati Public Schools – retired – got rehired as principal at Princeton High School within days –  worked a few more years – retired again – and got hired again within a week, to be principal at Madeira High. Scott didn’t stay tiny for long, went on to earn a degree from the University of Cincinnati, and got into education, himself. Today, he’s principal at Dry Ridge Elementary School in Kentucky. Their second son, Nick, also thrived, also did well in school and sports, and graduated from Miami University, in part aided by a scholarship for left-handers. Both young men married well, and there are two daughters-in-law that Ray and Pattie love, and seven grandkids, one adopted from Haiti – now eleven, and a killer on a set of drums. 

And Pattie is still here. 

Take that Death! You lose. 

Today, Pattie is still petite, still plays pickleball and golf, and knows how to have fun. So how does one deal with type-1 diabetes for more than fifty years? As she puts it, she set her mind from the start. “Nobody was going to beat me,” she said. She decided she would do whatever she must in order to meet the challenges posed by this insidious disease. During her first pregnancy, she added, “I would have run down the street naked, if that’s what it took” to have a healthy child. She also acknowledged, it’s never fun. She remembers thinking how nice a cure would be. “I just wanted one day where I could eat this, and not worry about what it was.”  She still remembers learning to give herself shots. You had to practice on an orange.

Grandson A.J. is a killer on the drums.

 

My daughter Emily had to learn the same way; and when I try to tell Pattie about it, I can’t, until I compose myself. In Emily’s case, she’s been dealing for almost two decades. As a teen, she hated having to check everything she ate, and at one point rebelled and said she didn’t care. So I asked Pattie about health insurance, because Emily is a nurse now, but even with good insurance, paying for the supplies to fight diabetes is a drain. Pattie remembers a time, when she maxed out her medical coverage and fell into what was then called the “donut hole,” and had to pay for insulin herself at the end of the year. One day, she went to pick up a three-months’ supply and was told it would cost $1,900. She just left the insulin there and went home. 

But you can’t just leave insulin behind. Type-1 diabetics must have it to live. For older Americans, recent changes in how the federal government negotiates drug prices, have capped out-of-pocket costs at $35 per month. Young diabetics, often lacking the best healthcare, face much steeper costs. Some try to “cut back” on how much they use; but that can backfire badly, too. 

So Pattie knows it’s not an easy road to travel. I’ve bicycled across the USA twice, and plan to do it again, to raise money for JDRF. Having type-1 diabetes is like pedaling uphill every mile of every day. But what else can you do? Pattie has been pedaling hard for fifty-three years, and the key lesson I’ve gleaned from Pattie and every type-1 diabetic I know, is that they learn to pedal hard because if they stop it can’t work. If your loved one has been diagnosed recently, you can be sure that with your love and support, they’ll grind up every hill, every day, and you’ll be able to help them in myriad ways. 

JDRF has done all that an organization can to build better “bicycles” for type-1s to ride, and someday, with “God looking out,” as Pattie would say, we’ll get to the end of the ride, where there’s a cure.

To Donate to JDRF, please click here.