A Frenchman, a German and a Jew are walking down the street. The Frenchman says, “Je suis verry thersty. I must have some wine.” The German counters, “Ich bin sehr thirsty. I must have some beer.” The Jew responds, “Oy, am I thirsty. I must have diabetes.”
The first time I ever had a major illness was in 1999 when I was diagnosed with breast cancer. I was shocked. I raged, “How can I, a 20 year faithful practitioner of macrobiotics and experienced health counselor and guide, develop cancer?” There was denial, shame, guilt, confusion and fear. It took my writing a book, Food, Faith & Healing: 40 Macrobiotic Accounts of Cancer and Illness to come to terms with being fallible and imperfect.
In 2011 I was faced once again with a diagnosis, this time juvenile diabetes. I had always thought that diabetes is diet-related, and my diet was exemplary after 31 years of macrobiotic practice. I laughed when the doctor told me I had high blood sugar...until she tested me in front of her and showed me the results--a blood glucose level of 444. Normal blood sugar is in the 100s.
My education in diabetes was about to take a quantum leap. I was right that diabetes is almost always diet related. In fact, 95% of all cases diagnosed in the US are due to diet and lifestyle, called Type II diabetes. But my kind of diabetes is called alternately Type I, “insulin dependent,” “juvenile diabetes,” and possibly “LADA”–Latent Autoimmune Diabetes of Adults–a.k.a. “Type 1.5.” That last one is not clear to me as I don’t fit the classic paradigm of a gradual onset of symptoms. Whatever its name, at age 60 my lifestyle took a drastic turn.
Like the joke, I was so tired–I remember sitting down in the middle of a hike and telling my friends I’d wait for them there. I was super thirsty–my mouth was like a cotton ball. I could barely finish a sentence without taking a sip of water. Of course I was peeing all the time since I was drinking so much. I kept losing weight as my body consumed itself looking for energy sources now that glucose was no longer available to the cells. I remember that I couldn’t find a belt small enough to hold up my pants. Who goes to a doctor for getting slim and being thirsty? I thought maybe turning 60 really did mean over the hill. My vision was blurry and my heart raced at times, but I didn’t pay much attention. I suffered painful calf cramps in the morning when I woke up, and severe vaginal itchiness. What saved me was accompanying my husband, Sheldon, to a doctor’s visit for some tightness in his calves when he walked. I mentioned my symptoms and by the next day I was on insulin. It was that fast.
The Mayo Clinic explains the symptoms I had like this:
- Increased thirst and frequent urination. As excess sugar builds up in the bloodstream, fluid is pulled from the tissues. This leaves you thirsty. As a result, you drink — and urinate — more than usual.
- Extreme hunger. Without enough insulin to move sugar into your cells, your muscles and organs become depleted of energy. This triggers intense hunger that may persist even after you eat. Without insulin, the sugar in your food never reaches your energy-starved tissues.
- Weight loss. Despite eating more than usual to relieve hunger, you may lose weight — sometimes rapidly. Without the energy sugar supplies, your muscle tissues and fat stores may simply shrink.
- Fatigue. If your cells are deprived of sugar, you may become tired and irritable.
- Blurred vision. If your blood sugar level is too high, fluid may be pulled from your tissues — including the lenses of your eyes. This may affect your ability to focus clearly.
Type 1 is considered an autoimmune disease that cannot be prevented and whose cause is not known. Most researchers believe that the disease develops when a virus or environmental toxin damages the pancreas, causing the body's immune system to attack its own organ in an autoimmune reaction. As a result, the pancreas can no longer produce insulin.
At the end of the summer in 2011 we were moving from two decades of living in Jerusalem to a small apartment in the Carmel mountains along the northern Mediterranean shores of Israel. We were also getting ready for our usual summer trip to teach at the UK OneWorld Festival, an activity we love. In addition, we were hosting two preeminent macrobiotic teachers, Simon Brown and Melanie Brown Waxman, on a teaching tour of Israel. So there was a lot going on, but if there was stress, it was stimulating and exciting.
During the week of our move to the north of Israel, we ate out for the first week while we set up our kitchen. In the UK I went on a week-long macrobiotic dessert binge with a friend who was sampling goodies for a proposed cookbook. This extravagance may not have opened the door to the virus that decimated my pancreas since the symptoms had already manifested, but it also didn’t help. In addition we were passengers in a car accident that summer, another indication of imbalance, but not a cause.
Initially there was a lot of experimentation going on as to what kind of insulin suited me at what dosage. I experienced massive frontal headaches that lasted for months. I could barely move my head without searing pain. I had a chronic low grade fever and accompanying body-ache as I adjusted to the artificial insulin I needed to inject. I’d only feel better for about an hour during and after eating, and then become weak, dizzy and headachy again. When that finally subsided I started to tremble, which, like the headaches, is one of the emergency symptoms of very high blood sugar. This shaking was accompanied by a rapid heart rate where I could hardly catch my breath. I also discovered that even the smallest wound was slow to heal. Not to appear a martyr, but when you’re in the midst of a situation, you deal with it. Eventually the symptoms subsided.
It wasn’t easy to transition from a healthy macrobiotic diet to a low carb regime. After three decades of a grain and bean diet, carbohydrates were now potential minefields of sugar highs and lows. In normal people, the pancreas automatically secretes the right amount of insulin to balance the glucose found in carbohydrates. Diabetics have to do this manually with injections of insulin according to what we estimate that we’ve eaten. I had to learn to measure my food and count my carbs. Christina Pirello, the award winning TV diva of natural foods, was of tremendous help as I stumbled my way through “low carb macrobiotics,” an oxymoron to me.
My primary macrobiotic counselor is Michael Rossoff, a gem of a man both intelligent and wise. He told me, “You are the first macrobiotic person I’ve ever met in 40 years of practice who has developed diabetes. For this you must utilize western medicine.” Michael explained to me that I get most of my energy now from fats and proteins rather than the sweets found in carbohydrates. He told me the story of a young man during the early days of macrobiotics in America when sweets and desserts were frowned upon. Michael caught this fellow, a type I diabetic, drinking oil from the bottle one night in the kitchen. His energy needs were not being met in any other way. Michael suggested that I have chicken soup, a revolution in my thinking. After so many years of rejecting my mother’s pleas–”For me,” she’d say, “Just have a little!” I bought organic chicken, and actually, I found it delicious!
My day was taken over with diabetes care, a full time occupation. I was overwhelmed with the paraphernalia of needles, vials, test strips, injection pens, and blood checking devices. I needed to check my blood sugar numerous times during the day, beginning when I awoke in the morning and continuing throughout the day. Every morning I took a injection of long-lasting insulin called Lantus. I timed myself after each meal to inject units of quick-acting insulin called NovoRapid according to an approximation of how many grams of carbohydrates I’d eaten, an inexact science at best. I injected the insulin in my belly, rotating around at random from one side and area to another. I never would have thought I could do it, but it's surprisingly easy. The needle is short and very thin, so I’d hardly feel it unless I picked too lean a spot on my body. The needle stays in for 5-10 seconds, and it's done. The post-meal injections usually went into my thigh. I got to where I can even do it through my jeans.
Any time I went out I had to carry with me an insulin “pen,” needles, test strips to measure my blood sugar, lancets and lancing devices, and two kinds of food in case I experienced low blood sugar–I’d need something sweet to immediately raise my sugar count in a hurry, and some kind of baked flour product to keep it from plummeting afterwards.
Physical exercise is instrumental to helping the body absorb insulin, so I added almost daily visits to the gym to my routine. I experimented with acupuncture, reflexology, shiatsu and Chinese herbs, and saw a dietician regularly along with a naturopath for food supplements. Unfortunately, the health fund dietician never heard of miso and thinks tofu is something akin to marshmallows. I didn’t dare tell her I had hiziki with dried daikon for lunch along with sweet rice and aduki beans. Even though I speak fluent Hebrew, some things just don’t translate.
Luckily I didn't have to give up Twinkies as I haven’t eaten such things since childhood. I tried eating less food more often, eating at set times like clockwork, eating more and eating less. Food habits are not so easy to change, and I found these methods largely inconvenient. At the advice of a friend, I decided to experiment with a diet popularized in the UK for diabetes. It’s something like a modified Atkins’ diet in that there are very few carbohydrates and an emphasis on animal products and non-starchy vegetables (basically avoiding anything orange). I would eat a measured ½ cup of cooked barley or 1 piece of bread for breakfast along with an egg, my usual miso soup and greens. That would be my only carbohydrate for the day. Lunch and dinner rotated among fish, chicken, cheese and soft dairy products. I hadn’t eaten these foods for 30 years.
This regime worked well, and my insulin needs fell to next to nothing. I continued with a minimal dose of the long lasting insulin in the morning, and needed short-acting insulin only rarely. But there were two problems. First, there is something called a honeymoon period for type 1 diabetes when the pancreas is still manufacturing the last bits of insulin before it all gets used up. So I still had these reserves in my body. Second, I missed my macrobiotic food. I was eating so much fish that my husband Sheldon considered building me an aquarium at home. Although the new foods were interesting, I didn’t like eating large quantities of chicken and dairy. I wasn’t even sure how healthy they are in the long run.
The straw that broke the camel’s back was our annual trip to the US for the Taste of Health macrobiotic cruise. Suddenly surrounded by hundreds of macrobiotic friends and counselors so intent on plant-based nutrition, I felt like I was swimming upstream, a traitor to the cause I’d preached for the last 30 years. I wanted to jump overboard before we even set sail. For 7 days I watched the most delicious macrobiotic food being served while I struggled with standard ship fare that I had rejected years ago. I was not a happy sailor.
Travel abroad required me to bring along a glucagon injection set for low blood sugar emergencies, a cold pack in which I can carry my insulin on ice packs, and lots of extra supplies so I don’t run out of anything. Anything can go wrong, and although I’m an “it-won’t-happen-to-me” type, almost everything has. Things break, don’t work, or simply run out. There’s no option of not being prepared. “Insulin dependent” means I have two hours to find a solution.
Eating my own food is tricky enough, but eating out is really an undertaking. If I miscalculate the amount of carbohydrates that I’m eating and consequently take too much insulin, I’ll suffer hypoglycemia, or low blood sugar. Symptoms are brutal and can come along very quickly. It’s a terrible feeling of trembling and shakiness, weakness, fast heartbeat, anxiety, lightheadedness, insatiable hunger as the body tries to zap up its sugar level. and in extreme cases, cold sweats (it happened to me once). The diabetes clinic gave me some artificial sugar water to carry with me all the time, but I found that small aseptic packs of apple juice or raisins could do the trick. I'm getting more intimate with my body than I ever imagined. If I overcompensate for the hypo with too much sweet taste, my blood sugar level will soar, and I’ll flip into hyperglycemia–too much sugar in the blood.
For example, one time I took a big glass of warm carrot juice before I went to bed, a beverage I had often enjoyed. At night I woke up with numbness in my fingers and a racing heartbeat. It lasted over a half hour, and was scary. I hadn’t realized how much sugar there is in carrots, particularly when juiced, and especially when heated. Now I only drink juices when I need to quickly counter the effects of low blood sugar.
High blood sugar can come about during stressful times or illness, but usually it results from taking too little insulin for the amount of food I’m eating . For example, it’s impossible to know what commercially prepared foods contain hidden sugars, wheat based fillers, starches or corn syrups. Symptoms like thirst, increased urination, or blurred vision usually come on slowly and can go unnoticed until I check my blood sugar with a tester strip and inject more insulin. Long term hyperglycemia effects the kidneys, heart, eyes, but one doesn’t feel much on a day to day basis. There is a blood test called A1C which portrays a three month average of blood sugar levels. It's used to diagnose diabetes and assess treatment. An A1C value of 6.5% or more is a sign of diabetes. So far in the first year and a half of diabetes I have had many hypers- and hypos and my A1C has been 8.7. A serious condition called ketoacidosis can occur when blood sugar is high and there is not enough insulin circulating in the body for an extended period of time. This happened to me once, and I was treated in the emergency room with an intravenous insulin solution and hospitalized. It took four days to regain blood sugar balance.
Last summer I graduated from manual insulin injections to an insulin pump. This is a major improvement in my quality of life. A small box-like device holds an insulin vial, and a mini-computer calculates how much insulin I need for the amount of carbohydrates I estimate that I’m eating. I still have to guess my carb intake, but it eliminates manual injections in my thigh or stomach with each meal. I don’t have to remember to leave the house prepared with an insulin pen in case I decide spontaneously to eat out. The pump is lightly inserted into my stomach or buttocks, connected by a thin tube to the box that sits in my pocket or hangs from my belt. It makes life that much easier.
Still and all, the pump is not foolproof. A lot can go wrong, and much of it has. I had a steep learning curve of the many steps to set it up, change the insertion site and replenish the insulin every 3 to 4 days. I remember on a trip to Belgium arriving late at night and needing to replace a depleted insulin vial. In my fatigue and incompetence I ended up stabbing myself with the insertion needle and bleeding all over the mattress and down the hallway. It was not one of my better moments.
I’m hoping one day to get a sensor. This is a device that alerts me to hyper- and hypoglycemic blood glucose levels. Right now only children and pregnant women are entitled to this expensive devise under the Israeli national health plan. It would help me eliminate the swings in blood sugar that I too often experience by alerting me before they worsen.
I'm blessed with wonderful support. Sheldon and his family offer ongoing compassion, care and love. Sheldon is my rock, an extraordinary support for me in all aspects of my life. Medical care in Israel is accessible and subsidized, rendering the doctors’ bills and equipment costs minimal. It’s a good thing we don't work, because the medical appointments take up a lot of time, and Sheldon comes to every one of them with me. At the beginning I found myself at one doctor or another daily. I’m fortunate to have top quality care in a diabetes clinic with top endocrinologists, nurses, and dietitians who work together to coordinate appropriate care measures.
Thank God for artificial insulin! Less than 100 years ago diabetes was a death sentence. The treatment was a very strict diet with minimum sugar intake. At best, this bought a few extra years. In some cases, the harsh diets even caused starvation. Artificial insulin is one of the all time biggest medical miracles, meriting a Nobel prize in 1923. Although it’s not a cure, as long as I keep getting insulin, I can live an almost normal life. I’m not alone either. Any club with Mary Tyler Moore in it can’t be all bad. At least I joined at age 60, and not in my preteens, another blessing.
As with all challenges and experiences of contrast, I may not have deliberately opted for diabetes, but now that it’s part of my life, I see that I can handle it, and my self esteem rises. I have the opportunity to learn once again that I don’t have to get everything just right, and I relax my perfectionism. Once more I can lighten up on myself, including my eating habits, and take into my life what suits me intuitively rather than what’s taught to me theoretically. I appreciated animal products during my period of high protein-low carbohydrate eating. It felt so good to control my insulin intake and let go of my prejudice against animal protein. That experiment eventually clarified for me my love of plant-based foods, which I embrace as much as I can. It feels so good to flow with life and accept it all–true macrobiotics. Life is sweet.