| SOURCE: Insulin-FreeTIMES, Fall 1999 THE BIGGEST STRUGGLE IN MY LIFE Margaret Bumann, Omaha NE I first gave this speech at the seminar hosted by the Insulin-Free World Foundation in Omaha, my hometown. Living with a chronic illness has, without a doubt, been the biggest struggle in my life. I was diagnosed with diabetes at the age of 20. I, like you, had heard the medical profession's mantra again and again: "You can still live a 'normal' life, it's up to you, and how you control this disease." For years I struggled with the definition of "normal". Is being constantly fatigued normal? How about losing my ability to tink clearly, as my blood sugar drops - is that normal? Or going to dinner at someone's house and insisted that dinner be on thime... so normal people so that? If these things aren't normal, I must be doing something wrong - or perhaps I was buying into a skewed presumption. For 16 years this disease has held me in a vise-like grip of dependence on pharmacies, doctors, and rigid control. The dream of a cure has been elusive... floating to the surface to keep hope alive when frustration sets in, but never seeming to carry much urgency. It's time to change the way the public, healthcare professionals, and we, as diabetics, think about this disease. Diabetes is something you never get a break from - and always pay a price for, Because of diabetes, I am both bbrave and fearful. I have been open about my illness to the public, and I've hidden it many times too. My co-workers often marvel at my nonchalance in taking a blood sugar in the most unlikely places - in the car, in mid-sentence, as I'm typing a story, at the anchor desk right before a live shot. I have worked hard to lead a "normal" life, but there are days when my illness haunts me with the same fury as when it pounced upon me 16 years ago. Like when I'm at a public event and I feel my sugar dropping. The conversation in my head goes something like this: "I can't believe it, how could I let this happen?" When I should be telling myself, "This is part of my illness and both I, and the people around me, must acknowledge its limitations." I developed diabetes during my sophomore year of college. I began to feel depressed, fired, thirsty, and nauseous. I sought psychological counseling at student health and was surprised to learn that I had sugar in my urine, and was probably diabetic. Surprised, even though my older sister had developed diabetes at age 12. I remember her never-ending struggle with this tenacious disease that now was mine. When my ability to achieve perfect control was thwarted by human limitations, I was burdened with guilt. For the first time in my life, I felt I couldn't conquer something. I remember the public portrayal of diabetes: "you can still live a normal life, you just need to take control." I've tried, succeeded, and failed many times. And still, if you aks how I feel, I'd say that more than 90% of the time, I feel stressed, tired, and burdened by this illness. The specter of an early death, of living with complications, and looms ever more closely as time goes by. I'm an intelligent, hard-working person, but no matter how hard I try, how "good" I am, I cannot get perfect - nor sometimes even adequate - blood sugar control. People remark, "You don't look like you have diabetes." I have minimal diabetes-induced complications. There's one micro-vascular hemorrhage in my left eye that will prbably disappear on it's own. No kidney damage, noo neuroopathy, no digestive problems, and no vascular disease. But to say that my life is not complicated by diabetes is a lie! Such a vast untruth! I've watched a paternal uncle die from diabetic complications, after going through two kidney transplants. First, he lost his eyesight to retinopathy, then his feeet were partially amputated as a result of neuropathy, and he was constantly losing consciousness because of hypoglycemic unawareness. I remember the phone call eight years ago from my older sister, Roberta. She was cryinng because her five-year-old son had just been diagnosed with diabetes. She's a nurse, her husband's a doctor; they knew what diabetes was about - and they were very afraid. I've seen my diabetic sister go through several diabetic comas, watched her in hypolycemic shock, and witnessed sudden and severe mood swings. I've watched her quit her job, and give up some of her dreams because diabetes has simply drained her of energy and willpower. I've heard the frustration and anger in her voice when she says "you know, people think if you have diabetes, you should just be able to handle it." Well, I have managed my disease fairly well. I have largely avoided complications. I have even managed to have one healthy child, and am pregnant with my second. But what you don't see is my mood swings when my blood sugar plummets. |
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| Source: Insulin-FreeTimes, Fall 1999 THE BIGGEST STRUGGLE IN MY LIFE Margaret Bumann, Omaha NE I first gave this speech at the seminar hosted by the Insulin_Free World Foundation in Omaha, my hometown: Living with a chronic illness has, without a doubt, been the biggest struggle in my life. I was diagnosed with diabetes at the age of 20. I, like you, had heard the medical profession's mantra again and again: "You can still live a 'normal' life, it's up to you, and how you control this disease." For years I struggled with the definition of "normal". Is being constantly fatigued normal? How about losing my ability to think clearly, as my blood sugar drops - is that normal? Or going to dinner at someone's house and insisted that dinner be on time... do normal people do that? If these things aren't normal, I must be doing something wrong - or perhaps I was buying into a skewed presumption. For 16 years this disease has held me in a vise-like grip of dependence on pharmacies, doctors, and rigid control. The dream of a cure has been elusive...floating to the surface to keep hope alive when frustration sets in, but never seeming to carry much urgency. It's time to change the way the public, healthcare professionals, and we, as diabetics, think about this disease. Diabetes is something you never get a bread from - and always pay a price for. Because of deabetes, I am both brave and fearful. I have been open about my illness to the public, and I've hidden it many times too. My co-workers often marvel at my nonchalance in taking a blood sugar in the most unlikly places - in the car, in mid-sentence, as I'm typing a story, at the anchor desk right before a live shot. I have worked hard to lead a "normal" life, but there are days when my illness haunts me with the same fury as when it pounced upon me 16 years ago. Like when I'm at a public event and I feel my sugar dropping. The conversation in my head goes something like this: "I can't believe it, how could I let this happen?" When I should be telling myself, "This is part of my illness and both I, and the people around me, must acknowlege its limitations." I developed diabetes during my sophomore year of college. I began to feel depressed, thired, thirsty, and nauseous. I sought psychological counseling at student health and was surprised to learn that I had sugar in my urine, and was probably diabetic. Surprised even though my older sister had developed diabetes at age 12. I remember her never-ending struggle with this tenacious desease that now was mine. When my ability to achieve perfect control was thwarted by human limitations, I was burdened with guilt. For the first time in my life, I felt I couldn't conquer something. I remember the public portrayal of diabetes: "you can live a normal life, you just need to take control." I've tried, succeeded, and failed many times. And still, if you ask how I feel, I'd say that more than 90% of the time, I feel stressed, tired and burdened by this illness. The specter of an early death, of living with complications, looms ever more closely as time goes by. I'm an intelligent, hard-working person, but no matter how hard I try, how "good" I am, I cannot get perfect - nor sometimes even adequate - blood sugar control. Diabetes changed me. Ifeel like I have a disability - a sort-of cancer of the immune system - a partial paralysis of my ability to heal. My body is not my own. People remark, "You don't look like you have diabetes. "I have minimal deabetes-induced complications. There's one micro-vascular hemorrhage in my left eye that will probably disappear on it's own. No kidney damage, no neuropathy, no digestive problems, and no vascular disease. But to say that my life is not complicated by diabetes is a lie! Such a vast untruth! I've watched a paternal uncle die from diabetic complications, after going through two kidney transplants. First , he lost his eyesight to retinopathy, then his feet were partially amputated as a result of neuropathy, and he was constantly losing consciousness because of hypoglycemic unawareness. I remember the phone call eight years ago from my older sister, Roberta. She was crying because her five-year-old son had just been diagnosed with diabetes. She's a nurse, her husband's a doctor; they knew what diabetes was about - and they were very afraid. I've seen my diabetic sister go through several diabetic comas, watched her in hypoglycimic shock, and witnessed sudden and severe mood swings. I've watched her quit her job, and give up some of her dreams because deabetes has simply drained her |
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