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Swaying in rhythm like drunk fans singing their team fight song, we campers bellowed our camp theme, clapping and banging on dining tables: "Shock, shock for Camp Firefly! We take the insulin - try not to cry!"
Camp Firefly for Juvenile Diabetics, located in Springmount, Pennsylvania, was our summer haven. Free from our overprotective parents, we played in the river, pulled pranks on staff, and shared our fears and funny stories of living with diabetes.
We were free as birds until it was time for our diabetes education classes, thick with deadening medical jargon. Listening to campers' horrific testimonies, I became imprisoned by silence. I remember one girl telling us about being placed in foster care because her parents neglected her health. I remained friends with my fellow campers long after camp ended, returning with them every summer until we were old enough to become counselors.
Today, August 2, 2007, at 7:02 a.m., is the thirty-fifth anniversary of my diagnosis with type 1 diabetes at the old Children's Hospital of Philadelphia. I remember that foggy Monday morning so clearly, exactly what I wore and everything that was said. When I returned to the examining room after having left nearly a gallon of urine in the bathroom container, the doctor asked my mother, "Mrs. Gordon, have beverages been mysteriously disappearing from your refrigerator?" The list began: gallons daily of water, orange juice, milk, lemonade; even two entire cases of soda meant for the school fair.
Blurting that I had diabetes, the doctor summoned the nurse and told my mother to hold my arm as he drew blood. I was sure that my condition was only temporary. My favorite television show was Dr. Welby, and I credulously believed that doctors could cure anything. When the endocrinologist entered my hospital room, I faced the wall and refused to acknowledge him, hiccupping, sobbing, and wiping snot from my nose.
"Stop crying," he told me sternly. "You're acting like a child!" "But I am a child," I sobbed. "And you've been taking blood since I arrived." He apologized and tried to console me, but I heard only every other word: "There's no cure, blah, blah, blah. I know you're scared, but blah blah, blah."
On the fourth day, the nurse demonstrated withdrawing insulin from two vials, stressing the importance of not contaminating one with the other. "What the hell!" I thought. "Why am I practicing injecting a navel orange when I could be eating it? I don't know what to do, and I don't care," I was given a book about diabetes, edited for children. It was full of kids frolicking in the grass after learning that they had diabetes, and following protocol perfectly.
Walking the corridors as if I were a hotel concierge, I poked my nose into every new admission's room. "What's your name, and what brings you here?" Linda, age ten, had five older brothers with type 1 diabetes. While experimenting with their urine testing supplies, she had learned that she had diabetes too. As she told the story I panicked, returning to my room in tears. Linda and her brothers proved that diabetes was incurable. Even Dr. Welby verified it was incurable in an episode that aired during my second week in the hospital, featuring a child with symptoms like Linda's and mine. During my remaining stay I refused to talk to anyone. I cried during arts & crafts, the magic act, and story time.
After I was released, a visiting nurse came every day for one week to monitor my health, diet, and mental state. That was during the "good old days," when insurance gave you what you needed and did not rob you blind. As she and my mother talked, I hid behind the refrigerator, crying.
A diabetic guide traveled to school with me that September, along with a cigar box containing a syringe (without the needle, of course), a cotton ball, two empty vials of insulin, and other diabetic apparatus taped and arranged in order of importance. During my first class, my teacher asked, "And how did you spend your summer, Little Miss Gordon?" Showing him the box, I whispered in his ear. After he prepared the students for my presentation, I talked about being diagnosed with diabetes and how they could help me adjust.
The children were given literature, and a poster with illustrations of insulin reactions and high blood sugar symptoms was tacked to the door. The girls were happy because they hoped that they would be chosen to escort me to Nurse Chin's office. When I visited her, she always seemed confused and asked me why I was there. A temperature was her only gauge for measuring illness.
After a year, I became lackadaisical. I still took my insulin, but neglected to test urine sugars and abandoned my diabetes paraphernalia. The night before every quarterly doctor's visit, I stayed awake until three in the morning, creating three months' worth of urine sugars. To make sure they were realistic, I logged a few 3 and 4+'s. I had to balance the ketoacidosis tests as well: mostly negatives and a few moderates. To top it off, I performed calisthenics, doing jumping jacks, jumping rope, and jogging in place in an attempt to lower my blood sugar before my check-up.
I appeared so zombie-like during my doctor visits that Dr. Baker asked my mother if I was getting ample rest. To my chagrin, he also told my mother that he believed I was creating fictitious urine and ketone tests. My behavior was not uncommon, he said, especially among female patients; male patients were apparently more honest when they failed to adhere. Dr. Baker told me that if I did not stop these shenanigans, I would be banned. He added that I was wasting my parents' money and digging myself an early grave.
What harsh words for an eleven-year-old, I thought. But it was not out of character for Dr. Baker, who often took young diabetic patients on a hospital tour to impress upon them the consequences of neglected diabetes. He even coined a term, Frequent Flyers, to describe patients hospitalized two or more times per year due to personal negligence. Dr. Baker never dismissed me as a patient, though, and he didn't put me into foster care either. And once I turned fourteen I began to understand the importance of managing diabetes.
This was the regimen: piss in a paper cup, measure five drops of urine and ten drops of water into a test tube, and then drop in a speckled blue pill that fizzed like Alka-Seltzer once it hit the concoction. Don't dare touch the bottom of the tube; you might get burnt! Performing these test made me feel like a wizard in a lab, creating magic. Adding to the appeal was Dr. Baker's handsome twenty-four-year-old assistant, Joe. Joe had type 1 diabetes as well, and he taught me the tricks of the trade. Once he arrived, Dr. Baker's office became my after-school hang out. Having diabetes never felt so good, until Joe left for graduate school.
During the wee hours I would contact the glucose strip hotline to troubleshoot. Once my problems were solved, the operator and I would shoot the breeze for hours. Our topics ranged from being diagnosed, to relatives who had diabetes, to my quest to win free gifts. Each vial tab was worth points that you could trade in for prizes. "Okay, Monique, for twelve points you can get cotton balls, lancets, a diabetic fiction or nonfiction book, a cook book, or diabetic vitamins." Stalling as if I were on "Let's Make A Deal," I would ask, "Can you repeat that?" "C'mon Monique, it's 1:00 a.m. Shouldn't you be in bed? Don't you have school?" "Okay, okay, I'll take the all-natural vitamins for nine points." Two years later the point system was discontinued. My mother claimed that I called so often that I depleted the gift selection.
As technology progressed, injections became less painful. Home blood glucose monitor testing kits replaced urine tests, spelling the end, to my everlasting delight, of eye droppers and test tubes. Hemoglobin A1c tests appeared, and one insulin injection increased to multiple injections. Later, my multiple injections were replaced by the insulin pump. Sometimes I clip my pump to my attire's waistband, or a thigh band if I want to conceal it under a skirt or dress. "Calling Agent 99!" my friends would jokingly say whenever I wore the leg band and operated the pump with my remote.
"Ms. G's bugging the room! Everyone quiet! She has us under surveillance!" a student shouted as my pump tubing dangled while I reached to write an equation on the board. "She has a bomb - everybody duck!" another yelled. Amidst the laughter, I stopped to teach the students about insulin pumps, relating its functions to math, science, and nutrition. Students begin sharing tales about family members who had died or suffered from diabetic complications. "Don't you hate carrying all that stuff?" one student questioned. "I would just have to die!" another shouted. Telling stories and sharing times when I felt like quitting brought my students to realize that some conditions make one stronger.
When I travel, I carry a black insulated medical case, 7"x 9" x 2", in my backpack. It holds glucose tablets, glucose gel, two syringes, alcohol swabs, one vial of insulin and an icepack, batteries, a glucose meter, strips, a log book, and pump supplies, not to mention the Medic Alert ID bracelet I wear in case I become ill and cannot communicate. Carrying the case invites the following responses: "Monique what the hell is in your backpack?" "Girrrrrl, your diabetes must be bad if you have to carry meds around." "Do you always have to carry it? And so much? When do you carry a regular purse?" "Think about it," I have to explain. A thief is more likely to steal a handbag than a backpack, so I save purses for special occasions. Being adherent means having control and knowing my blood sugar levels during the course of the day. If I didn't carry this "stuff," as people call it, and use it properly, I would be of no use to myself or anyone.
There was a period when I concealed my condition from dates, fearing they would run like the devil. But the number one "do" in the diabetic manual is "avoid unnecessary stress." Now I refuse to make compromises just to make someone else feel comfortable. Usually, I have been the one to break the relationship because of my partner's unhealthy lifestyle. One resumed smoking after my first insulin reaction, blaming his smoking addiction on that one episode. Another couldn't understand why I didn't prepare meals like his momma: full of fat, sugar, salt, and that poison red punch KoolAid. "Put your life insurance policy in my name and I'll prepare any meal you desire," I responded sarcastically.
"Oh, Monique, I don't want you to die!" another one said. "Die!" I yelled into the phone, "With your lifestyle, I can have your grave prepared tomorrow!" After that comment, I was labeled insensitive.
I developed a sense of humor from having diabetes. Every day is an adventure. Although diabetes can be a nuisance, you can lead a somewhat normal life. My most comforting adventure was rescuing a two-year-old Chihuahua Rat Terrier. Endo Jesus Divo and I have a lot in common: a Napoleonic demeanor, a sense of humor, lots of energy, and many admirers. I prepare him home-cooked organic meals and bathe his paws after every walk, making me feel like Mary Magdalene. In return, he alerts me when I'm about to have an insulin reaction and wakens me at 3:00 am as a reminder to test my blood sugar:
I often meet newly diagnosed people and those who have struggled to manage their diabetes. Once I tried to advise a parent on the do's and don'ts of soft drinks for her newly diagnosed daughter. As a result the mother arranged for us to meet. While I was discussing the ups and downs of diabetes, they both freaked and I was banned from ever communicating with the daughter again. Now, ten years later, the daughter and I are colleagues in the school system. After complimenting me on my appearance, she discussed her battle with diabetes and accused me of ignoring her plight because of what her mother did. "I'm afraid that I might scare you now, even though you're thirty-four," I responded. "I'd hate to have your mother threatening me again."
I used to rate my health as "poor," but my physician rates it as "excellent." Having an illness does not mean you're in poor health, I have learned. Examinations, mental state, and medical history are what count. People are free to do what they want, when they want. I choose to live.
"Shock, shock for Camp Firefly!
We take the insulin - try not to cry!
Take us campers for a swim
And don't let a shocky camper in!
We never stumble! We never fall!
We sober up on orange juice all!
All us campers want to fight
Diabetes with all our might!
Fight! Fight! Fight! Fight!
Monique Gordon (Binky), a Philadelphia native, is a gifted poet, playwright, and performance artist.