I was the first camper dropped off in the Whippoorwill cabin.

It was 1984, and I was sporting my Dorothy Hamill haircut and my mom had sent me in a matching outfit, complete with pedal pushers she’d ironed with a pleat.

I was 9 and attending a weeklong Georgia camp for kids with Type 1 diabetes. And I was terrified. I stood outside in the woods and the tears started flowing until a camp volunteer came to my side. I had never been away from home without my family for a week. I was too young to realize how it would change my life.

This summer, 40 years later, I’m back from another week at Camp Kudzu for children with Type 1 diabetes. I’ve lost track of how many times I have gone over the years, and some of my friends think I’ve lost my mind to do this at my age. Now, I’m one of the “old-timers” who goes, hoping to show the younger generation that they can thrive with this relentless disease.

Life with any chronic disease is rough. Life with Type 1 diabetes means the disease is in constant focus.

Campers enjoy a singing and dancing session during a recent week at Camp Kudzu, for kids and teenagers with Type 1 diabetes. Jennie Clayton/Special to the AJC

Credit: Jennie Clayton/Special to The AJC

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Credit: Jennie Clayton/Special to The AJC

We must work constantly to keep our blood sugar levels down through a careful balancing act of insulin, food, activity and a million other factors. It’s not just yummy sweets I must be mindful of. Stress, illness, lack of sleep and dehydration can raise my blood sugar.

Allowing my blood sugar to get too high or too low can be deadly. That’s why I’m one of millions who fight to live a “normal” life and show this disease who’s in charge.

When I was diagnosed in 1983, I spent several days at what is now Children’s Healthcare of Atlanta at Scottish Rite. At home, I took two shots a day and pricked my finger two or three times a day to check my blood sugar. I had a glucose monitor the size of a brick.

My doctor when I was diagnosed was the late Robert Schultz, Georgia’s very first pediatric endocrinologist. My mom will always remember how kind he was to her in those early days. In 2018, I wrote his obituary when he died shortly after announcing his plans to retire. I will always be grateful to both him and his partner, Dr. Stephen Anderson.

My dad died at 38, about three months before my diagnosis. He was diagnosed as a young child with Type 1, practically a death sentence at that time.

Insulin was discovered in 1921 when a young surgeon named Frederick Banting and his assistant, Charles Best, figured out how to remove it from a dog’s pancreas, according to the American Diabetes Association. Their colleagues, J.B. Collip and John Macleod, later helped extract a more refined form of insulin from the pancreases of cattle.

In January 1922, a 14-year-old boy dying from diabetes in a Toronto hospital became the first person to receive an injection of insulin.

By the time I was diagnosed, the days of boiling syringes to sterilize them had thankfully ended. Blood sugar testing was also done in the home, rather than relying on urine testing.

Dr. Anderson and Dr. Schultz alternated their time at camp. Dr. Anderson served as the camp photographer long before the days of digital cameras. He would hang pictures in his office for everyone to see at their next appointment.

The bath house had been dark and I saw bugs near the showers. Little me, wearing my flip-flops of course, was not amused. I think I took two showers that week, but still smiled in front of Dr. Anderson’s camera.

At my next appointment, I saw my dirty self and my greasy hair. But I pretended I hadn’t seen it, and my mom didn’t even recognize me.

Still, I couldn’t wait to go back to camp. I had accomplished so much. I slept in a top bunk, used a community bath house, and wove a lopsided basket that sat in our kitchen for many years.

Every summer, I made new friends and learned so much, and diabetes camp became one of my favorite weeks of the year. I’m still in touch with many of those I met at camp as a child and teenager, thanks to social media.

Campers work on tie-dye creations during a recent session of Camp Kudzu, for kids and teens living with Type 1 diabetes. Jennie Clayton/Special to the AJC

Credit: Jennie Clayton/Special to The AJC

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Credit: Jennie Clayton/Special to The AJC

Many times over the years, it has seemed as though a cure was within reach. We are still waiting and praying.

In the meantime, the technological advances are incredible and continue to improve. I started wearing an insulin pump more than 20 years ago. I think I’m on my sixth pump now, along with a continuous glucose monitor.

The CGM, which I usually wear on an arm, keeps a constant check on my blood sugar, sending those numbers to my pump, usually attached to my midsection with plastic tubing. The pump will adjust my dose when I’m too high or low, but I still have to stay very involved. I track my blood sugars on my Apple watch, and my husband also uses a phone app to check on me, like when I’m playing tennis and start making bad shots.

Before Carl and I were married, I told him I wanted him to spend a week at Camp Kudzu with me. I can still remember the look of surprise on his face. I wanted him to see firsthand what being a kid with this disease involved. Until then, diabetes had just been my thing to handle.

This year, Camp Kudzu is celebrating 25 years. I’ve loved seeing the camp grow from one week in the beginning to year-round programming. My husband volunteered with me again this year, and I’m not sure who had more fun.

AJC reporter Alexis Stevens celebrates living 41 years with Type 1 diabetes while volunteering during a summer camp session. Jennie Clayton/Special to the AJC

Credit: Jennie Clayton/Special to The AJC

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Credit: Jennie Clayton/Special to The AJC

Giving back just feels good. Over the years, so many people volunteered their time so that I could be that kid getting into a canoe for the first time or climbing a tree for a ropes course.

When you’re middle-aged, those twin-size beds and cabins don’t have quite the same appeal as they did years ago. Fortunately, I try to stay active so I can still keep up with all of the fun.

On the last night of this year’s camp, called Little Shot of Camp Kudzu and held at Camp Grace in Roberta, all of the volunteers with Type 1 stood up in front of the campers. We lined up based on how many years we had lived with diabetes.

The first camper to arrive as a 9-year-old was now last in line.

Once again, there were tears in my eyes at summer camp, but not from fear. I was overwhelmed to be standing there, and even more so when kids started clapping. One camper said she had to hug me.

That’s why I do it.


MORE INFORMATION

For more on Camp Kudzu and the various programs throughout the year, visit the camp’s website at campkudzu.org.