Type One Nation

I had no idea what the word “hope” meant in relation to myself until I attended a convention on diabetes (10-12 years ago), one that showed clips of the research and experimental procedures being tried around the world. As I sat and watched, a faint giddiness, a lightness, seemed to rise through my body. I actually felt an excitement illuminating from what must have been a dead area—dead, because I’d never allowed light into what was a particular darkness within me. With acceptance and no real thoughts as to the future of “my condition,” I had no expectations, but more importantly, I had suffered no disappointments either. I had accepted and survived Type I diabetes as does many a prisoner sentenced for life. I had not allowed myself to think of not having it!

Suddenly though, I actually felt hope rising through my then middle-aged body. The result has been a very real change in my attitudes and actions—I now talk more openly about diabetes, and I try to convince others that it can be survived and survived well. Over sixty now, I’m the living proof. However, I have not yet awakened to the day “the cure” has been found.

I have tried over the past years, to constantly cultivate better and better attitudes. The only good way to go, that I can see, is to let the patient have a voice, to make a patient part of the team. As for teens and young people, try to realize that they want, even need to be attractive, and perhaps these feelings need to be taken this into consideration as to treatment.

If I were talking to representatives and senators, or anyone interested, about funding for diabetes and healthcare—I’ve decided to ignore the temptation to hand each a standard box of one hundred syringes. I’d tell them to use these up in a couple of weeks or so on themselves, or better yet, I’d suggest they take them home. Face what my mother and father did. Tell your child to inject a needle five times a day for a couple of weeks or so. What kind of parent, indeed, what kind of God would do that to a child? It is actually for such parents and children that I now feel the most sympathy.

There were so, so many children—scores and scores of children, plus crowds of interested adults at the Type 1 Nation Summit in St. Louis, MO. JDRF (Juvenile Diabetes Research Foundation) holds this yearly, and I felt honored to be a part of the panel called Living Well with Diabetes, meaning there were four of us who had lived with this condition for over fifty years. Evidently, we were positive enough that we gave people hope, and yet I still have to consider my basic belief that no one should have to suffer a chronic disease for fifty years.

I’ve never, in fact, supported a charitable organization of this type as I do not always believe most of the monies go toward a cure; however, in the case of JDRF, I’m at least assured that a large portion of donated monies go toward what is no longer so unbelievable. Even as we speak, members of a clinical trial have been injected with encapsulated cells, the encapsulation or protective lining meaning that the pancreas will no longer destroy these cells that produce insulin, which controls the use of sugar in a healthy body. Our keynote speaker, Kady Helme, is a young woman from New York City, had just finished taking part in a clinical trial for what is being called the artificial pancreas.

If successful, the encapsulation process would mean diabetics only have to stop in every couple of years for a treatment, as opposed to the daily burden of treatment now. The artificial pancreas is not nearly so easy, simply meaning that the gadget-makers are “closing the gaps” between the insulin pump and insulin sensor.

That is the sensor, which keeps track of blood sugars in the body, will one day automatically transmit to the pump, which will automatically give OR NOT GIVE A (remember insulin can be a deadly drug) whatever amount of insulin is needed. Though I’m a fan of the pump, there is nothing right now automatic about it. The diabetic must still deal with blood sugars, highs and lows, dosages, etc., though I find it a welcome relief from multiple shots a day. Still, a lot of paraphernalia for an adult, much less a child—yes, one does feel “bionic,” and yes, injection and needles are still involved—just not as many.

At any rate, these are realty improved treatments, and I feel relatively sure that “a cure” for perhaps more than one disease is no longer science fiction. Perhaps not in time for me, but certainly in time for all those children and teens I met up with. Yes, young adults struggling to find good jobs and health insurance also. (Yes, the Type 1 diabetic faces not only a struggle with “the condition” but with the worlds of “good health” and medicine also.) Now, all progress points toward hope for diabetics.

I’m grateful that I came out of a coma when I was 11-years-old, and yes, many experiences in my life have been good, maybe even wonderful. Still, I don’t wish, would not wish on anyone else, some of the teeter-totter experiences a Type 1 can go through. I’m fully behind JDRF’s goal of “Type One to Type None.”

All new medicines, injection methods, and testing paraphernalia aside—isn’t it time for a cure? That’s the more positive approach we need, isn’t it? We all can do this, can’t we? Surely we can save people from not only “the needle,” but the condition of diabetes itself. Tell these chronically ill children, there’s no need to be forever courageous because no lifetime sentence is necessary now. Not one day, but today, my child, you will walk free.

Welcome to Type I

The soft underside of my arm is stretched out in front of my face. I am reaching too try and catch another girl dancing out of my reach. Then the playground whirls in slow motion, and then I fall. Even before I woke out of the velvet dark of a coma in Memorial Hospital, Room 210, I’d somehow guessed what the word “diabetic” meant.





In 1962, I was only an eleven-year-old girl in a small town who could not understand why my parents, the doctors, and the nurses kept wasting their time in trying to explain to me what I’d somehow understood about Type I in the waking. That my sentence was “life,” and a life that would now be different from all the rest. The rest being the apparently robust children with whom I’d been growing and thriving.

Before I woke up in Room 210 to the hush-hush opening and closing of elevator doors from across the hallway, I had attended my sixth grade class and was a good student. My biggest concern was that I’d seemed to be losing my two best girlfriends. These were talkative girls growing into popular girls who about to graduate into the seventh grade to find better friends, I’d already guessed. Rather plain, I’d had to struggle in order to keep up in the looks department. On the day before I went into the hospital, I can still remember being deliriously happy that I’d actually been able to acquire a boyfriend!

However, after I woke up in Room 210, my concerns became only two. The first being—why had I been singled out? Yes. Why me? In those days, there was hardly a diabetic in our whole town, much less anyone who was a juvenile (Type I) diabetic, a child. Why, there was no other child diabetic but me! More importantly, I did not like what people thought—that I’d been a bad child, one who ate too much candy! No, I was a good girl and I decided that I did not care for what some were calling “being special” at all. If not before, I now, very definitely, just wanted to be like everybody else.

My minister, my parents, someone, everybody kept telling me that the God of my Sunday School classes was absolutely not angry with me, and that the same God never gave anyone more to carry than he or she could bear. Still, I could not help noticing that no one had asked me what I thought I could bear.

When I was a child, the world of medicine was not what it is today. Back then, my doctors and my well-meaning parents talked right over me in the hospital bed, never asking me for a comment or question. No children, much less girl-children, went around asking distressing, much less angry, questions. At any rate, they talked about diet plans, shots, things I really didn’t want to know all that much about actually.

During my “stabilization period” in the hospital (one month), I could remember I’d been surrounded by confusion in the emergency room—bright light everywhere, the fall of footsteps and voices calling, the clank of silver metal. I still hate the sound of clanking metal and bright light. I also remembered in Room 210 how my own parents’ faces had seemed so far off. Why, they were floating so far off? I, as their child, did not have to worry about their fright, did I? What I remember now though is sound of my mother desperately crying, the sound of my father praying. The deep shadow that had become, to me, my parents’ faces. What came to me then as instinct, I think, was that I had to be brave for the sake of my parents. Period.

The truth I was not about to tell anyone was that I felt I simply could not bear thoughts of my future. Not a future of no more chocolate cake, no more cookies and brownies. Not a future of shots and more shots, needles, blood and urine, and more needles. A future of high and low blood sugars dwindling down to blackouts and unconsciousness, true panic. Panic while friends stared in pity at me as I tried to glide unseen down the hall.


Then there were the friends who hid sacks of candy behind their backs, and friends who apologized endlessly to me while they cut their respective birthday cakes. I dreaded a future in which I’d have to go around confessing my condition to all I met. Wouldn’t I have to tell boyfriends too? No, I’d have to hide my syringes and needles. I scrambled to throw up a wall around myself. The rest of my painful adolescence, self-consciousness became a constant state of mind.

“Do you have to take shots?”
This is the question I was most often asked about my diabetes. I think the idea of giving oneself a shot horrifies people. A person newly diagnosed with Type II (non-insulin dependent diabetes now an epidemic) will try desperately to lose weight or try endless types of oral medications to forestall such a fate. Anything to “stay off the needle”!

When I was first diagnosed with Type I (juvenile) diabetes at age eleven in 1962, one of my mother’s friends brought me a magazine article to read. The article told of a young woman who’d taken thousands of insulin shots, and yet she continued to play as much tennis as she’d liked. Why, she played all over the world! (By the time of my adolescence in the 1960s, what I used because my pancreas produced no insulin to control blood sugar was long-acting insulin that kept blood sugars under some kind of control for an entire 24-hour period.) Although my mother’s friend had only meant to help, I had absolutely no interest in playing tennis anywhere. More importantly, I was absolutely horrified at the thought of enduring a lifetime of insulin shots. (Yes, now I’m on the pump—better, so much better, but still medical paraphernalia.)
I received medical instruction on giving shots, of course. Those who’ve worked in hospitals might be familiar with the instruction given children using their first syringe. I learned how to adjust the plunger, and then how to push out the air to draw up the correct amount of medicine. Then I plunged the needle into an orange, to practice administering the dose.

I experienced absolute horror when my father, in an uncharacteristic moment of bravado around illness, actually leaned out of the hospital window to demonstrate “the orange technique” to my giggling Girl Scout troop down in the hospital parking lot. An orange has no feeling, of course. Seemingly no sense that its body, its tender membranes are about to be invaded by what was then a sharp and painful needle.

Meanwhile, my mother cringed. By her own admission, she didn’t feel she could do it. Also, a medical world of big words, dangerous medicines, and staff in white coats frightened her. No, I’d do everything thank you. I did not even then want to be dependent. I’d just grown up. Consider me a grown-up, okay? A shield of calm and on we go. I talked to or wrote to no one about this attitude. I began to develop secret feelings, but I had no words.

I bargained with God for time off for good behavior after six months, and then I’d write a book. In short, I’ve served a lot longer than six months—53 years to be exact. Has it all been bad? Heavens no. Though I did not have the moral support that so many young people do now, I determined that my life would be as normal as I could make it and so it has been. The pictures below give an idea of that calm personality, a life of college, teaching, work, marriage, and finally that fifty-year mark. My main concern has always been that “the patient” simply does not get to say much. Despite improvements, still doesn’t.



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The difference in today is that I have the words. I have to caution that I’m not a medical expert and will be giving no such advice, and of course, I can only speak as one person. Still, I have a lot of experience and have been very much a professional person, and now I have the freedom to discuss both your and my own feelings as to syringes, insulin pumps, highs, the terrors of low blood sugar, the roller coaster of adolescence, dating, marriage, what the inventors are finding and more importantly, not finding. How’s that medical establishment treating you?

If you’re a diabetic, if you know anyone who is, what do you feel about that? Most importantly, if you’re a parent, maybe I can be of some service as to letting you know how your child feels if he or she does not have the words. Won’t know till we try.