Column: Five Years of Type One Diabetes Is Long Enough

By Rebecca DravisiBerkshires Staff
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Five years.

That's 1,825 days, 43,800 hours and 2,628,000 minutes since the most unwelcome guest entered my life.

On Oct. 1, 2010, I brought my 4-year-old daughter, Noelle, to the pediatrician. She had been drinking a lot and peeing a lot, and a co-worker told me those were signs of diabetes.

It can't possibly be diabetes, I thought as I watched my happy and healthy daughter breezily wave goodbye to her preschool friends. Had I known that I was witnessing the last carefree moment of her childhood, I would have tried to freeze time, wrap her in my arms and try with all my might to ward off what was coming next.

The pediatrician had her pee in a cup. Noelle thought that was pretty silly. Our smiles faded when the doctor came back and said in a somber tone of voice, "There's sugar in her urine."

Five years ago, those five words changed my life.

Sugar in her urine. A blood glucose of 550 (normal is 80-140). A diagnosis of type one diabetes. A trip to the ER to get a shot of insulin, the first of thousands more to come. A sleepless night at home. Hours of diabetes education on a weekend afternoon. More finger pricks and needles. Tears and confusion and sheer terror.

It was a nightmare I couldn't wake up from. Every time I had to pin my daughter down to give her a shot, wipe her tears, answer her questions about when she would get better, count every carbohydrate that went into her mouth, wake up at 2 a.m. to test her blood sugar, I felt like I had to be living someone else's life. This couldn't be happening.

The truth is, it happens a lot more than most people know. Currently in the United States, about 1.25 million people live with type one diabetes, and 85 percent of them are adults, most of whom were diagnosed as children or young adults and have been living with this disease for too long. This autoimmune disease, in which the body mistakenly destroys the insulin-producing cells in the pancreas, is far less common than type two diabetes, a metabolic disorder in which the pancreas still makes insulin but the body doesn't utilize it properly. Both types are devastating diseases to live with,  but no amount of dieting or exercising or losing weight will help people with type one diabetes, who are immediately and forever dependent on insulin to survive.



Noelle has survived the last five years. Indeed, in many ways, she has thrived, despite the added challenge of another unwelcome autoimmune disease that came knocking in 2013. She's 9 1/2 now, and on the surface, she still looks like that happy and healthy preschooler without a care in the world. She goes to school, she does karate and hip hop dance, and she plays the viola and loves Girl Scouts.

But behind the scenes, and hidden in the shadows, it's a different story.

Noelle wears two devices attached to her body: a pump that delivers insulin to her 24 hours a day, seven days a week, and a continuous glucose monitor that reads the amount of sugar in her interstitial fluid every five minutes. Both devices are inserted with needles; the pump gets changed out every three days and the CGM gets changed out every two to three weeks. She has been wearing the pump for four years; she still cries sometimes when it is changed. She has been wearing the CGM for one year; she says it doesn't hurt but I see her eyes close and her body flinch when I press down on the insertion device to pierce her skin with the needle.

These devices help keep her safe, but they don't control her diabetes. We still count every carbohydrate that she eats. We still prick her finger to test her blood sugar six to eight times a day, including throughout the night. She still has scary episodes of hypoglycemia — low blood sugar — that leave her spacey, tired and weak. These episodes cause her to spend too much time out of the classroom in the nurse's office, to miss out on half of dance or karate classes while she waits for her blood sugar to come up, to have to eat or drink in the middle of the night when her glucose drops too low. She still has random episodes of hyperglycemia — high blood sugar — that affect her mood and behavior and potentially damage her eyes, kidneys, heart and more.

Yet through five years of this, Noelle has amazed me with her courage and her strength. She has inspired me to work as hard as I possibly can to help find a cure so she is not resigned to a lifetime of this disease. That is why I have become involved with the JDRF (formerly the Juvenile Diabetes Research Foundation) and the American Diabetes Association, organizations that are not only dedicated to finding a cure but also to improving the lives of people living with the disease. JDRF funds many promising research endeavors. The ADA provides legal counsel to families struggling with school or workplace discrimination issues and sends kids like Noelle to diabetes camps where they can meet other kids with diabetes and feel "normal."

This year, my family is supporting both of these organizations and will be walking in the ADA Step Out Walk in Boston on Oct. 17 and the JDRF One Walk in Agawam on Oct. 18. To raise money for our team, which five years ago we dubbed "Noelle's Belles" in honor of her love of princesses and the plethora of girls who walk with us, we are holding two upcoming local fundraisers. On Saturday morning, Oct. 3, the North Adams Movieplex will show "Hotel Transylvania 2" at 10:30 a.m.; admission is just $5 a person and all proceeds go to Noelle's Belles. And then on Sunday, Oct. 25, the Progressive Palette will host a painting party fundraiser for Noelle's Belles where adults and kids 8 and up can come paint a fun seasonal painting from 2 to 4 p.m. in Williamstown. (Register online at progressivepalette.com.)

It's not easy asking for money or planning fundraisers. People get tired of hearing me ask. People don't have a lot of money to give. People are busy. But yet, for the fifth year, I persevere. Because even though I can't take this disease away from her, I want to do everything I can to support the people who maybe one day, if we pray hard enough and care hard enough, actually can take it away from her.

Five years. That's long enough.

Rebecca Dravis is the community editor at iBerkshires.com. She can be reached at rdravis@iberkshires.com.


Tags: benefit walk,   diabetes,   

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WCMA: 'Cracking the Code on Numerology'

WILLIAMSTOWN, Mass. — The Williams College Museum of Art (WCMA) opens a new exhibition, "Cracking the Cosmic Code: Numerology in Medieval Art."
 
The exhibit opened on March 22.
 
According to a press release: 
 
The idea that numbers emanate sacred significance, and connect the past with the future, is prehistoric and global. Rooted in the Babylonian science of astrology, medieval Christian numerology taught that God created a well-ordered universe. Deciphering the universe's numerical patterns would reveal the Creator's grand plan for humanity, including individual fates. 
 
This unquestioned concept deeply pervaded European cultures through centuries. Theologians and lay people alike fervently interpreted the Bible literally and figuratively via number theory, because as King Solomon told God, "Thou hast ordered all things in measure, and number, and weight" (Wisdom 11:22). 
 
"Cracking the Cosmic Code" explores medieval relationships among numbers, events, and works of art. The medieval and Renaissance art on display in this exhibition from the 5th to 17th centuries—including a 15th-century birth platter by Lippo d'Andrea from Florence; a 14th-century panel fragment with courtly scenes from Palace Curiel de los Ajos, Valladolid, Spain; and a 12th-century wall capital from the Monastery at Moutiers-Saint-Jean—reveal numerical patterns as they relate to architecture, literature, gender, and timekeeping. 
 
"There was no realm of thought that was not influenced by the all-consuming belief that all things were celestially ordered, from human life to stones, herbs, and metals," said WCMA Assistant Curator Elizabeth Sandoval, who curated the exhibition. "As Vincent Foster Hopper expounds, numbers were 'fundamental realities, alive with memories and eloquent with meaning.' These artworks tease out numerical patterns and their multiple possible meanings, in relation to gender, literature, and the celestial sphere. 
 
"The exhibition looks back while moving forward: It relies on the collection's strengths in Western medieval Christianity, but points to the future with goals of acquiring works from the global Middle Ages. It also nods to the history of the gallery as a medieval period room at this pivotal time in WCMA's history before the momentous move to a new building," Sandoval said.
 
Cracking the Cosmic Code runs through Dec. 22.
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