Biking for JDRF: 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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