Thinking back there have been several memorable moments over the nearly fifty-year course of time I have been living with Type 1 diabetes. I’ll tell you about a few of them and how they led to writing this book.
“Goobledeygooinkadadigga” a voice hovered over me rattling incomprehensible sounds. “Oh shut up!” I said to myself eyes opening gingerly to see who was blabbering on like that. He and his voice soon became clear. He was a handsome man dressed in whites, hospital whites. Who was this guy? Where was I? I nodded a faint smile as I tried desperately to figure out what the hell I was doing in a hospital. The ah-ha moment came when I realized I had pneumonia. Damn! I hoped it wasn’t double pneumonia. I had been surfing in the chilly autumn waters of the mighty Atlantic and caught an awful cold that I couldn’t seem to shake. It was making me pee all the time and get so thirsty I’d raise my hand in class constantly to go to the water fountain.
Suddenly with a caring glance the guy in whites asked if anyone else in my family had diabetes. Stunned, I yawned and pretended to fall back asleep. He walked away from my bed. DIABETES! DIABETES! What the hell was he talking about?
Over the next couple weeks I learned that I had been rushed to the hospital in ketoacidosis (DKA), diabetic coma. As I recovered in the hospital I learned how to administer insulin shots by piercing an orange. I remember feeling sorry for that orange. The day before my release from the hospital, the endocrinologist (the guy in whites) suggested that I make a list of questions in order to help with the transition from hospital to home. I had only one pressing question. Would I still be able to eat hot fudge sundaes? I blurted out. The kind doctor smiled and shook his head no meaning it was out of the question. I could feel my chin quiver and my heart sink simultaneously. When he left my room, which was now filled with flowers, stuffed animals, cards and colorful balloons, I began to cry. I cried buckets of tears. No more sweet hot fudge sundaes made with my two favorite ice cream flavors, coffee and chocolate. No more nuts sprinkled on top under the puffy cloud of whipped cream. Why bother to live? What kind of a life could this be with diabetes and without hot fudge sundaes?
That was fifty years ago in 1962 and I was a breakaway young teenager who didn’t like the “diabetic diet” that was prescribed back in the stone age, the ice age, the dark age of diabetes care. It was the time we weighed food, sterilized glass syringes and 25-guage steel needles. It was when we poured murky urine samples into test tubes. It was a time when diabetes had a strong hold of powerful reminders.
Today if I wanted something such as a hot fudge sundae, I’d know how to manipulate my carb/insulin ratios on my insulin pump and adjust exercise to go for it. But I don’t. You see, the dislike of what seemed like such an unappetizing way to eat so many years ago helped prepare the way to a career in the food business. Fresh food and meal time were a major part of growing up with a mother who was a great Polish cook. She and my eight aunts, the Szumilowski sisters, used to send us kids to the butcher shop to buy “casings” for them to make their own kielbasa. They also made duck soup, kluski (noodles), babka, goluomka and piorogi. They hunted wild mushrooms and picked fresh corn and apples from fields and orchards in upstate New York. No wonder the graham crackers and skimmed milk snack recommended in the diabetic “Exchange” diet were not for me. I eventually became a chef and ran my own Natural Celebrations catering business in New York City for over twenty years where I served healthy foods in fresh vibrant and creative ways to the Park Avenue crowd.
It wasn’t that I went from Mama’s Polish kitchen into an exclusive New York catering business. There were many side journeys along the road over a period of years that took me through college as an English major, to working in film in Italy for five years where I also learned the beauty and passion of food, to living on an organic farm commune in Massawippi in the Eastern Townships of Canada for two years where we ground wheat berries to make flour to make bread and gathered water in rain barrels and cooked over a wood stove since there was no electricity nor running water on the farm.
Through those years of adventure and challenges I never knew anyone else who had diabetes but I learned to always carry my diabetes with me in a safe place my back pocket. I learned how being active made me feel good and kept my blood sugars balanced. In Italy I walked hundreds of steps every day up and down the mountain and swam in the clear waters of the Tyrannean Sea in the little village of Positano south of Naples on the Amalfi Coast. I chopped wood and snow-shoed for transportation as part of everyday survival in the cold Canadian winters. Summers meant biking, walking, planting and harvesting a lush sustenance garden. We dug a root cellar to store vegetables for the scarce winter months. During those years of living and traveling halfway around the world, with diabetes and my little son Jude, as my constant companions, there were some gripping moments.
I have been mistaken for a witch, drug addict, drunk and mystic because of my diabetes. Along the way I came to understand that I could reach out and make dreams happen despite having a chronic condition like diabetes. That awareness and confidence triggered a friendship.
One ordinary morning when I woke up, tested my urine with Tes-tape litmus paper and injected my daily shot of NPH insulin, I realized that this diabetes was not going to leave me alone. It wasn’t going away. I would have to repeat a similar routine the following morning and many mornings after that. It was another of those ah-ha moments. I decided to become friends with my diabetes. Seems like a silly way to put it, calling diabetes a friend. What it really means is to have that positive attitude about life which encourages one to dream and set high goals despite diabetes. With very limited diabetes education available so many years ago I didn’t have a wide scope of references at my fingertips. The friendship deal seemed to make sense though. Diabetes gives us a roster of guidelines and regulations. Food, medication and exercise are the bare bones of diabetes care although exercise was never highlighted as vital. But, I always felt better when I moved and my blood sugars reflected it. Some form of exercise became part of my everyday life. I felt that by respecting the diabetes tenants and encircling those with a positive attitude chances were that life would be healthy and fulfilling.
By the mid-1980’s I made two new discoveries, Sheldon Bleicher MD who I called the Wizard and the American Diabetes Association. They were both great awakenings for this diabetes hermit. Dr. Bleicher taught me new ways to manage my diabetes and sparked an interest in fine tuning my diabetes care. He was a taskmaster and I learned so much from him. He will always be the Wizard to me. When I heard about an organization called The American Diabetes Association and took a Volunteer Educators’ certificate course I discovered that other people, real people, had diabetes too. I wasn’t alone anymore. I dove in head first by organizing a health walk in New York’s Central Park called Fitness-A-Foot. It was my first time out with a team of volunteers who were all type 1’s and it was at a time when charity walks had not yet come into fashion but exercise was becoming mainstream. Our team worked well together and planned a fabulous event for April 7, 1989. That morning I looked out my apartment window in Greenwich Village and rubbed my eyes thinking my vision was cloudy and maybe I was having a reoccurrence of the peripheral diabetic retinopathy I had a brush with in the mid-1970’s. Instead it had snowed all night and the city was blanketed in the most beautiful white carpet of early spring snow.
In Central Park, thanks to the number one best partner any Type 1 can have, my “Type 3” husband and support system Danny Ambrosini, we were able to secure generators to power our needs. Volunteers and walkers showed up with thermoses of hot tea and coffee and thanks to Danny for engineering the generator, music bellowed from the loudspeakers. A Type 1 aerobics instructor led a high energy warm-up dance. Soon we forged ahead with the 5K walk/run to raise awareness of the importance of exercise for diabetes. Participants cheerfully set out on the snowy trail when suddenly the snow subsided and brilliant sunshine blazed through clearing the sky to bless the two hundred Type 1’s, Type 2’s and their families and friends who came out to support the cause. Our core group of volunteers remained friends for many years. I went on the NYADA Affiliate board and thus launched a new life into the diabetes community for which I will be ever grateful. After years of helping with walks, fundraising events, family symposia, library programs and comedy crusades I began to widen my scope in the diabetes community. I had been writing a food column called The Shore Palate for a New Jersey newspaper and found that I was including diabetes in many of my columns as part of my mission to get people to pay attention to eating a healthy diet and being active with exercise and sports. It was during that period that I began writing for Diabetes Interview (now Diabetes Health) magazine. One day Scott King, then publisher of the paper, called and invited me to California to write a story about an upcoming diabetes conference in Mission Springs, California. It was held by a group known as IDAA (International Diabetic Athletes Association) founded by Type 1 athlete and marathon runner Paula Harper.
Once there I marveled at the group of approximately 150 athletes all of whom had diabetes. I was home. I became consumed by the activities, workshops and camaraderie of the group. The year was 1996 and many of the athletes at the conference managed their diabetes with insulin pumps. Dr. Bleicher had been encouraging me to try a pump but I couldn’t quite make the commitment to jump across the seemingly deep chasm from good old reliable insulin shots to the gold standard of insulin pump therapy. Learning about pumps and other technology at the IDAA conference bolstered my confidence to take the leap. Until then I felt that nothing could help control my diabetes better than the six or more daily insulin shots I was taking, the eight blood glucose checks I did everyday on my meter as a runner, and the vegetarian diet I had been enjoying since 1969. Soon after the conference I began pumping insulin and haven’t looked back since. Insulin pump therapy is not a cure and not the perfect answer for everyone but it surely has helped me in my diabetes management.
It’s 2012 now and the science, technology, psychology and socialization of diabetes have developed and advanced greatly since 1962 and my hot fudge sundae memories. There are now many quality diabetes websites, blogs and athletic and educational organizations, I continue to write about living a healthy lifestyle and daily activity with diabetes for several magazines and www.diabetesnet.com where I write a monthly column called Judith’s Cyber Kitchen for Ruth Roberts and John Walsh (two of the friends I met at the first IDAA conferences in California). I served as editor of a quarterly newsletter on diabetes, sports and exercise, The DESA Challenge, for five years during a ten year term on the DESA (Diabetes Exercise and Sports Association) board of directors. I was honored with a Lilly for Life award for journalism, I teach tai chi classes at Diva-betics meetings in New York City, Diabetes Sisters’ conferences, TCOYD (Taking Control of Your Diabetes) conferences and other diabetes events. I stay active with distance walking, cycling and lots of dance. My husband and I have been volunteering with Sports Central at Children With Diabetes conferences for nine years. Observing how smart the kids are about recognizing low blood sugars and knowing how many carb grams they need to treat them and how they run around as happy and healthy as their non-diabetic brothers, sisters and friends is deeply enlightening.
We know that living everyday with diabetes is not always a cakewalk however now is a time when research and education are working hand-in-hand to improve the quality of our daily lives. Diabetes is something that makes those of us who live with it special people. We are disciplined, determined and responsible and often have an intuitive understanding about life that others don’t need to have. As you read through the pages of this book you’ll get to know the outstanding women who all say yes I have diabetes just watch what I can do!
I’d like to quote something from one of the young athletes in the Upcoming Inspiration Generation Chapter, Elise Zevitz, who says: “Having diabetes is like driving a car with a manual transmission. You have more control, more involvement and more responsibility just like the very best sports cars.”
The inspiration to write this book came on a plane trip going home from a Diabetes and Exercise conference in Colorado Springs. The night of the Lifescan Athletic Achievement Awards at the Olympic Training Center I looked around at the audience and scanned the group of amazing athletes who live their lives with strength, responsibility, humor, discipline and an almost uncontrollable urge to show the world that they can achieve and live their dreams despite diabetes. I focused in on the young girls and women of all ages who were there participating in sports and exercise and prospects of endless possibilities. As Camille Izlar says Chapter 3, “we can do anything we set our goals on, it just takes a little more planning.” This book needed to be written to sing out the praises of these dazzling muses who move amongst us, and to inspire you the reader whether you have diabetes or not. I think you’ll love the way The Sisterhood of Diabetes makes you feel. It’s bound to get you moving!
Unable to resist the urge to feed people I will leave you with a healthy “take- on- a- hike” snack to carry in your backpack as you hike, bike, climb and reach for the top of your world. I first made these cookies for a diabetes and sports conference in New York City in 2002. They are packed with a big nutritional bang, Make a big batch and freeze for future outings. Pack them in zip lock bags to keep the crunch going. When you do your own baking, you know exactly what goes into the diabetes mix. Choose healthy and nutritious ingredients to reward yourself after a successful sport or exercise event.
(makes about 70 cookies)
Pre -heat oven to 350.
1 / 2 cup canola oil
1 / 2 cup smooth peanut butter (freshly made)
1 cup brown sugar
2 large fresh eggs
1 / 2 cup low fat milk
2 cups whole wheat flour
1 t. baking soda
1 generous T. ground cinnamon
2 cups oatmeal (not instant)
1 /4 cup toasted wheat germ
1 / 2 cup dried cherries, cranberries or apricots (diced)
1 cup toasted sliced almonds
NUTRITIONAL QUALITIES: serving = 2 cookies. CAL = 95, PROTEIN = 2.5 grams FAT = 4.2 grams, CARB = 12 grams
OPTIONAL ADDITION: stir in 1 / 2 cup dark chocolate chips. Changes in nutritional information: CAL. 105, PROTEIN same, FAT = 5.2 grams, CARB = 13 grams