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 overprotectiveparents, we played in the river, pulled pranks on staff, and sharedour fears and funny stories of living with diabetes.
We were free as birds until it was time for our diabeteseducation classes, thick with deadening medical jargon. Listening tocampers' horrific testimonies, I became imprisoned by silence. Iremember one girl telling us about being placed in foster carebecause her parents neglected her health. I remained friends with myfellow campers long after camp ended, returning with them everysummer until we were old enough to become counselors.
Today, August 2, 2007, at 7:02 a.m., is the thirty-fifth anniversaryof my diagnosis with type 1 diabetes at the old Children's Hospitalof Philadelphia. I remember that foggy Monday morning so clearly,exactly what I wore and everything that was said. When I returnedto the examining room after having left nearly a gallon of urine inthe bathroom container, the doctor asked my mother, "Mrs. Gordon,have beverages been mysteriously disappearing from yourrefrigerator?" The list began: gallons daily of water, orange juice,milk, lemonade; even two entire cases of soda meant for the schoolfair.
Blurting that I had diabetes, the doctor summoned the nurse and toldmy mother to hold my arm as he drew blood. I was sure that mycondition 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 walland refused to acknowledge him, hiccupping, sobbing, and wiping snotfrom 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 Iarrived." He apologized and tried to console me, but I heard onlyevery other word: "There's no cure, blah, blah, blah. I know you'rescared, but blah blah, blah."
On the fourth day, the nurse demonstrated withdrawing insulin fromtwo vials, stressing the importance of not contaminating one withthe other. "What the hell!" I thought. "Why am I practicinginjecting a navel orange when I could be eating it? I don't knowwhat 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 grassafter learning that they had diabetes, and following protocolperfectly.
Walking the corridors as if I were a hotel concierge, I poked mynose into every new admission's room. "What's your name, and whatbrings you here?" Linda, age ten, had five older brothers with type1 diabetes. While experimenting with their urine testing supplies,she had learned that she had diabetes too. As she told the story Ipanicked, returning to my room in tears. Linda and her brothersproved that diabetes was incurable. Even Dr. Welby verified it wasincurable in an episode that aired during my second week in thehospital, featuring a child with symptoms like Linda's and mine.During my remaining stay I refused to talk to anyone. I cried duringarts & crafts, the magic act, and story time.
After I was released, a visiting nurse came every day for one weekto monitor my health, diet, and mental state. That was during the"good old days," when insurance gave you what you needed and did notrob you blind. As she and my mother talked, I hid behind therefrigerator, crying.
A diabetic guide traveled to school with me that September, alongwith a cigar box containing a syringe (without the needle, ofcourse), a cotton ball, two empty vials of insulin, and otherdiabetic apparatus taped and arranged in order of importance. Duringmy first class, my teacher asked, "And how did you spend yoursummer, Little Miss Gordon?" Showing him the box, I whispered in hisear. After he prepared the students for my presentation, I talkedabout being diagnosed with diabetes and how they could help meadjust.
The children were given literature, and a poster withillustrations of insulin reactions and high blood sugar symptoms wastacked to the door. The girls were happy because they hoped thatthey would be chosen to escort me to Nurse Chin's office. When Ivisited her, she always seemed confused and asked me why I wasthere. A temperature was her only gauge for measuring illness.
After a year, I became lackadaisical. I still took my insulin, butneglected to test urine sugars and abandoned my diabetesparaphernalia. The night before every quarterly doctor's visit, Istayed awake until three in the morning, creating three months'worth of urine sugars. To make sure they were realistic, I logged afew 3 and 4+'s. I had to balance the ketoacidosis tests as well:mostly negatives and a few moderates. To top it off, I performedcalisthenics, doing jumping jacks, jumping rope, and jogging inplace in an attempt to lower my blood sugar before my check-up.
I appeared so zombie-like during my doctor visits that Dr. Bakerasked my mother if I was getting ample rest. To my chagrin, he alsotold my mother that he believed I was creating fictitious urine andketone tests. My behavior was not uncommon, he said, especiallyamong female patients; male patients were apparently more honestwhen they failed to adhere. Dr. Baker told me that if I did not stopthese shenanigans, I would be banned. He added that I was wasting myparents' money and digging myself an early grave.
What harsh words for an eleven-year-old, I thought. But it was notout of character for Dr. Baker, who often took young diabeticpatients on a hospital tour to impress upon them the consequences ofneglected diabetes. He even coined a term, Frequent Flyers, todescribe patients hospitalized two or more times per year due topersonal negligence. Dr. Baker never dismissed me as a patient,though, and he didn't put me into foster care either. And once Iturned fourteen I began to understand the importance of managingdiabetes.
This was the regimen: piss in a paper cup, measure five drops ofurine and ten drops of water into a test tube, and then drop in aspeckled blue pill that fizzed like Alka-Seltzer once it hit theconcoction. Don't dare touch the bottom of the tube; you might getburnt! Performing these test made me feel like a wizard in a lab,creating magic. Adding to the appeal was Dr. Baker's handsometwenty-four-year-old assistant, Joe. Joe had type 1 diabetes aswell, and he taught me the tricks of the trade. Once he arrived, Dr.Baker's office became my after-school hang out. Having diabetesnever felt so good, until Joe left for graduate school.
During the wee hours I would contact the glucose strip hotline totroubleshoot. Once my problems were solved, the operator and I wouldshoot the breeze for hours. Our topics ranged from being diagnosed,to relatives who had diabetes, to my quest to win free gifts. Eachvial tab was worth points that you could trade in for prizes. "Okay,Monique, for twelve points you can get cotton balls, lancets, adiabetic fiction or nonfiction book, a cook book, or diabeticvitamins." Stalling as if I were on "Let's Make A Deal," I wouldask, "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'lltake the all-natural vitamins for nine points." Two years later thepoint system was discontinued. My mother claimed that I called sooften that I depleted the gift selection.
As technology progressed, injections became less painful. Homeblood glucose monitor testing kits replaced urine tests, spellingthe end, to my everlasting delight, of eye droppers and test tubes. Hemoglobin A1c tests appeared, and one insulin injection increasedto multiple injections. Later, my multiple injections were replacedby the insulin pump. Sometimes I clip my pump to my attire'swaistband, or a thigh band if I want to conceal it under a skirt ordress. "Calling Agent 99!" my friends would jokingly say whenever Iwore the leg band and operated the pump with my remote.
"Ms. G's bugging the room! Everyone quiet! She has us undersurveillance!" a student shouted as my pump tubing dangled while Ireached to write an equation on the board. "She has a bomb – everybodyduck!" another yelled. Amidst the laughter, I stopped to teach thestudents about insulin pumps, relating its functions to math,science, and nutrition. Students begin sharing tales about familymembers who had died or suffered from diabetic complications. "Don'tyou hate carrying all that stuff?" one student questioned. "I wouldjust have to die!" another shouted. Telling stories and sharingtimes when I felt like quitting brought my students to realize thatsome 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, twosyringes, 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 becomeill and cannot communicate. Carrying the case invites the followingresponses: "Monique what the hell is in your backpack?" "Girrrrrl,your diabetes must be bad if you have to carry meds around." "Do youalways have to carry it? And so much? When do you carry a regularpurse?" "Think about it," I have to explain. A thief is more likelyto steal a handbag than a backpack, so I save purses for specialoccasions. Being adherent means having control and knowing my bloodsugar 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 nouse to myself or anyone.
There was a period when I concealed my condition from dates, fearingthey would run like the devil. But the number one "do" in thediabetic manual is "avoid unnecessary stress." Now I refuse to makecompromises just to make someone else feel comfortable. Usually, Ihave been the one to break the relationship because of my partner'sunhealthy lifestyle. One resumed smoking after my first insulinreaction, blaming his smoking addiction on that one episode. Anothercouldn't understand why I didn't prepare meals like his momma: fullof fat, sugar, salt, and that poison red punch KoolAid. "Put yourlife insurance policy in my name and I'll prepare any meal youdesire," I responded sarcastically.
"Oh, Monique, I don't want you to die!" another one said. "Die!" Iyelled into the phone, "With your lifestyle, I can have your graveprepared tomorrow!" After that comment, I was labeled insensitive.
I developed a sense of humor from having diabetes. Every day is anadventure. Although diabetes can be a nuisance, you can lead asomewhat normal life. My most comforting adventure was rescuing atwo-year-old Chihuahua Rat Terrier. Endo Jesus Divo and I have a lotin common: a Napoleonic demeanor, a sense of humor, lots of energy,and many admirers. I prepare him home-cooked organic meals and bathehis paws after every walk, making me feel like Mary Magdalene. Inreturn, he alerts me when I'm about to have an insulin reaction andwakens me at 3:00 am as a reminder to test my blood sugar:
I often meet newly diagnosed people and those who have struggled tomanage their diabetes. Once I tried to advise a parent on the do'sand don'ts of soft drinks for her newly diagnosed daughter. As aresult the mother arranged for us to meet. While I was discussingthe ups and downs of diabetes, they both freaked and I was bannedfrom ever communicating with the daughter again. Now, ten yearslater, the daughter and I are colleagues in the school system. Aftercomplimenting me on my appearance, she discussed her battle withdiabetes and accused me of ignoring her plight because of what hermother did. "I'm afraid that I might scare you now, even thoughyou're thirty-four," I responded. "I'd hate to have your motherthreatening 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 arewhat count. People are free to do what they want, when they want. Ichoose 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.