The Daring Ms. Kniskern

I’ll start my post on Lily Kniskern by saying that her mother was one of the best young teachers I ever knew. As when I worked with her mom, when I talked to Lily, I came away impressed.

She learned the bad news, that she had type-1 diabetes, at age 14. Bad news, medically, was nothing new for the family. Her younger sister, Becca, was diagnosed with cancer at age two, went into remission, then had a second diagnosis at age four. Her father, who had been a chef, had switched to nursing as a career, and good health insurance at least eased the family’s worries.

I know the sisters have been close. So I ask Lily if she ever gives her younger sibling advice. “She’s a teenager. She doesn’t listen to me,” she responds.

Lily, left, Becca, right.

We both have a laugh. I tell her “you are really aging out ,” all of 19 3/4 years old.

Like all siblings, they will argue. Lily says Becca will sometimes pull the “cancer card,” if she pulls the “diabetes card.” 

Once they were arguing, and Becca got annoyed at Lily’s responses, and said, “You act like you’ve never gone low before.”

But Becca and Lily are both toughened by adversity. Lily was a strong student in high school (“around a 4.0 grade point,” she tells me, when I inquire). Still, she knows life has its risks. So she has foregone college for now, and has traveled instead. Last fall, she did a three-month tour in Europe, hitting Germany, France, Italy, Austria, the Czech Republic, and also a stop in London. Her favorite place was the lush, green Basque Country, between France and Spain. She also explained that she and a German girl hit it off and hiked together. I asked if she ever worried about safety, and she said no; but one night the two young ladies missed their bus connection, and, rather than pay for an Uber, walked ten miles back to the hostel where they were staying. I thought that sounded tough, but Lily said they had just taken a pasta-making class, and the walk kept her from going high.

The “carefree” life of the diabetic!

Lily has also visited the Caribbean, paying her way largely through a program called Workaway. In the Caribbean, she worked as a receptionist and cleaned rooms to pave her path. In Florida she cleaned rental units and walked the owner’s dog.

You’re only young once and type-1, until there’s a cure, is forever. So Lily has decided it’s not going to stop her, or interfere with what she wants to do with her life. When I talked to her recently, she had just come back from a cabin in the North Carolina mountains, said she has plans to go white water rafting, and then spend time in the Upper Peninsula of Michigan. “I’m doing what I love,” she says. Lily also says she wants others, newly diagnosed, “not to be afraid,” that “diabetes is not as scary as people think.” 

She does admit, “The first 2-3 months are the hardest, and then it gets easier.” But as anyone who has ever been diagnosed, and all their family members know, it’s no fun whatsoever. 

Unless you’re a needlephile, I suppose.

(I made that word up.)

In fact, her new boyfriend has been surprised by all the steps she must take to keep her disease under control. “You’re like a little Tamaguchi pet you have to take care of,” he told her and they both had to laugh. 

Since I am pedaling my bicycle across the USA at age 75, I think I can say, I admire those of an adventurous spirit. That’s Lily. Her mom tells me she worries, as I would. But Lily is clearly a bright young lady and smart enough to take care of herself.

So, I wonder, what’s her long term plan? She’s hoping to keep traveling, and her German friend may come to Florida, for a visit. And, in due time: College. “I love school and I love learning,” she tells me. She’s also a big reader, “so I’m not losing any brain cells,” she adds. In fact, she started kindergarten at age four, and when she makes up her mind to go back to school, she’ll be ready. She thinks she might want to become a genetic counselor and help others with problems like hers. She even says some of her high school friends who are in college, but unsure about what they want to do, are a little jealous about the adventures she is having.

I asked her if she worried about the costs of care, in the long run and she admitted she did. Spending money, “just to stay alive,” as she put it. That’s no fun.

But type-1 individuals have no other choice.

Finally, Lily fills in a few more blanks when I ask her:

She took French in high school and has been working to improve her skills, which helped her in Europe and the Caribbean.

Lily also mentioned the pleasures of meeting all kinds of travelers, mostly young, at hostels where she stayed.

She also wants a family someday: “Two girls,” she hopes.

When I ask her about her boyfriend she says they “very much hit it off from the start.” Cody Collins is the young man’s name.

Like so many type-1 diabetics, Lily has decided there’s no gain to complaining or moping around. “It’s not going to change.”

So she has decided to follow a more daring path and enjoy finding out where it leads.

She’s also used to pushing herself physically, which helps her manage her disease. She was on a jump rope team as a kid, and traveled the country some. In high school she was on the bowling team and did hurdles in track. A little rec. basketball also helped her stay in shape.

For now, college can wait. No doubt, when the time comes, an older and wiser Ms. Kniskern will be ready to meet that challenge with ease.

It was a pleasure to speak with her, and we both agree a cure, someday, would be great!

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Lily chilling in Venice.

Becca, left, Lily, right.

Becca, her sister. Now cancer free.

Lily sent several travel pictures, showing her infusion site. 

Changing an infusion site in Italy.

Lily in Milan.

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.)

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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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