Keep on Marching

JDRF T1D One Walk, 2015

Last Sunday, October 4, dawned cold and windy. Gray. It matched up with what I remember at the time of my diagnosis at age 11. I was diagnosed in January, and so of course, it was colder than last Saturday. Still, I remember the gray, and no, I’m not a fan of winter.

Last Sunday was different, though, in that the air was filled with exuberant children and teens, and yes, adults like me. The air was full of hope. I even made it through the 3-mile walk, thanks to partner Karen Zichterman, and the little boys and girls who kept running ahead of us shouting, “Keep walking! Keep walking.”

Type 1, these days, seems so near that cure—or at least very improved methods of treatment. Easier and more effective methods:
• the artificial pancreas (a system of external devices plus a phone app),
• “smart” insulin (the new drug actually can regulate itself to the sugar in the bloodstream),
• the encapsulation of insulin-producing beta cells (eliminating the need for transplant drugs),
• prevention and a further biological cure.

In the “old days,” the insulin syringes were made of glass. I kept mine in a glass jar filled with alcohol. The needles had to be screwed onto the syringe, and the needles were blunt by today’s standards. Insulin was made of beef or pork extract and it had to be refrigerated. I could not attend a single slumber party without toting along an embarrassing load of paraphernalia. The glass syringe clanged inside its bottle as I walked into each and every front door, or I always imagined it did. For the rest of my painful adolescence, self-consciousness became a constant state of mind.

I took a shot once a day, often without too much thought at all, for more than twenty years. Then there were new medical findings, and a new doctor in a new town talked to me about taking two shots a day for better control. I nodded my agreement, then left the office and did not go back. (I’ve heard that many diabetics have had similar reactions.) After twenty years—by then I’d had a minimum of seven to eight thousand shots—why shrink from a few more? Why such a fuss? Because to me, the suggestion added only “insult to injury”–the injury that has been done to the body, and therefore, the soul of the diabetic. A humiliation of the flesh.

Furthermore, the blood tests of the old days were even more of an ordeal for this child. Doctors insisted I have a blood test at least once a month, and I dreaded them as I have dreaded little since. The tests entailed only what we think of today as a simple and ordinary blood test. At any rate, the blood tests back then also necessitated a visit to the lab at the local hospital, meaning my poor mother had to drag me out of bed very early in the morning on the designated Friday for my blood sugar test.

In my mind, the drive to the hospital always takes place in winter. My mother and I ride through streets lined with bare trees under skies of gray cold to pull into the parking lot behind the emergency room. The hospital corridor is narrow, dingy, filled with garish light, and I feel as if I can hear the clock on the wall though its ticks are not audible. My mother and I sit and wait, and wait, and what I do hear is the clatter of needles and test tubes inside the lab, as well as the most hated sound–one I can pick out to this day—the snap of rubber tubing.

The problem was, is, and will continue to be that I have no good veins. I did have one vein that sometimes worked in my right arm, and my favorite tech seemed to have the most luck in “hitting it.” However, if “old faithful” just didn’t seem to be pumping a blood sugar day—the ordeal that followed could only be called a fishing expedition through the flesh of a child with a very long needle.

Not so with the children of today. Blood glucose meters for the fingers, continuous glucose monitors, and the insulin pump have made all the difference. Research has helped. Of course, I took several years to get on the pump—such was my distrust of medical personnel and pharmaceutical companies. In the days of my introduction to the pump, I tried not to be shocked at the size of the needle I had to use to get the miniscule tubing into my stomach, the insulin into my system. Not to mention, the purple bruising shocked even me, the old-hand.

Yes, I think all diabetics want “less sticking” please. I am a huge fan of the pump as my health has improved and I feel so much better. Yet I know many who don’t choose to wear a continuous glucose monitor, in addition to the pump, due to the fact that its use still means another device that must be inserted into and worn on the body. The reason I say I “walk for the kids” is so that one day less invasive methods can be found, methods that will not discourage adolescents and young adults from taking care of themselves. I favor methods such as the “smart insulin” or the encapsulated beta cells that can be fit into the body perhaps as little as every 2-3 years.

However, I’ve also realized, I walk for “the parents.” One of the most touching remarks I heard at the walk was from parents who admitted to having not slept for a whole night since the diagnosis of their child five years ago. Yes, everyone is afraid of that low at night that can signal danger for the sleeping child.

Right after my diagnosis, I’d avoid bedtime as long as I could. I did not want to lie on my bed and stare at the ceiling night after night. I can still remember the white squares of my bedroom ceiling as I’d count them over and over, one by one. I had trouble sleeping. My family lived on Main Street in our small town, U.S.A., and so I also listened for the soothing sound of the passing cars. As their lights lazily swept the ceiling, I’d pray to fall asleep. This was how I became twelve years old.

Of course, in the days when diabetics took just one shot daily, perhaps my insomnia was a result of high blood sugars—who knew back then? I did often awake during the night with the feeling of low blood sugar, and this became the terror. What if one night I didn’t wake up? Today, as insulin is so much more effective, and yet so many now fail to feel those lows coming on—of course parents are beside themselves over their child’s safety even while home in bed!

Too much fear, and yet the younger ones are so full of hope that they fill me with it. Doing well on their pumps, they are confident, as I wish I had been. As to the continued problems, I’d like researchers to keep working and to echo the children running ahead: Keep walking! Keep walking!

Contribute to JDRF One Walk

Cinda Thompson, of Peoria, has had Type 1 Diabetes for 53 years and counting. On October 4, 2015, she will be among thousands of walkers at the Juvenile Diabetes Research Foundation One Walk, Sun., Oct 4 (10:00 AM), Civic Plaza Park Levee District, 400 Richland Street, East Peoria., IL 61611.

She is part of the Z Team, along with Karen Zichterman of Chillicothe, whose son was also diagnosed with adult onset juvenile diabetes (Type 1), an immune system disorder. The local JDRF has contributed thousands of dollars to eliminate this difficult, life-burdening disease. Nationally, JDRF has contributed over $1.9B to T1 research, $98M in 2014: Type One to Type None.

Cinda was diagnosed in what she calls “the dark ages” of treatment of one shot of long-acting insulin per day, along with a diet of no sugar. Blood sugar testing as it exists today was not possible, and though high blood sugars were feared, Cinda assures that low blood sugars were and are feared perhaps even more by those who suffer from Type One.

The Juvenile Diabetes Research Foundation, counting many parents and children among its members, is very much responsible for helping to fund further help. Cinda has been awarded with the Joslin Research Center’s 50-Year Medal, as well as that of Eli Lilly, original company founders of insulin. She is happy to speak with any individual group or organization concerned with facing a long-term illness. Meanwhile, Cinda attributes modern medical advances like faster-acting insulins and the insulin pump, as well as more frequent blood testing, with improvements in her health and outlook.

Every contribution to: (http://www2.jdrf.org/site/TR?fr_id=5351&pg=team&team_id=179756&ref_px=9938709) is working on:
• the artificial pancreas (a system of external devices plus a phone app)
• “smart” insulin (the new drug actually can regulate itself to the sugar in the bloodstream),
• the encapsulation of insulin-producing beta cells (eliminating the need for transplant drugs),
• prevention and a further biological cure.

Any medical advancement can better the life of many a child and their worried families. Cinda has come to believe an actual cure might be possible. As grateful as this one woman is for her life, she does not want anyone else to have to suffer isolation, confusion, disillusionment, or even the financial challenges her condition has presented her throughout the years. This is why Cinda, the Zichtermans, and so many support JDRF—these people are involved with hope. A cure is possible. Type One to Type None!

Cinda Thompson

Lo! Lo! Lo!

The first time I experienced low blood sugar, I thought I was dying. I was an eleven-year-old child still in the hospital being “stabilized” after my initial diagnosis of Type I diabetes when I felt the “rush.” This rush that takes breath away was like a free fall.

 
Imagine the face of a sheer cliff, and though the “fingertips” of the brain scramble frantically in search of a hold, there seems to be nothing to catch onto. Space and air. Internally, there seems to be some dramatic drop in the barometric pressure of each cell in the body. The diabetic is falling or sinking and the insides become weak, the mind distracted. At least, I finally managed to find and push the nurse’s button.

 
I want to reassure people that I consider myself a lucky diabetic because I can actually feel a low blood sugar coming on. In addition, if I am having low blood sugar during the night, I automatically wake up. I have been informed by fellow patients that those new to diabetes have a harder time feeling a low coming on; thus, the danger. I have heard so many stories from parents whose children are suffering lows at night, but not waking up, that even I grow terrified for all. As I have grown “tighter,” I have noticed that lows can come on more suddenly—these days, one just feels disoriented and in some “wrong space.” It’s a “not tracking” feeling. It’s just so important to remember, diabetics often need to eat sugar. Pronto!

 
Normal blood sugar levels are said to range between 70-120. Glucometers for testing blood sugar were not available in the world of my childhood, but the lowest blood sugar most today’s blood testers will measure is 30. Thirty and then my machine flahes: LO, LO, LO. Too much insulin; the diabetic is overdosing! O.D.! A diabetic then needs to get his or her sugar level up immediately. Or what?

 
If glucose tablets or fruit juice are not administered, what can follow all too quickly is a loss of consciousness, later convulsions and even death. Glucose tablets can be purchased in any drugstore. The tablet dissolves immediately in the mouth, and therefore, sugar bypasses digestion, immediately hitting the blood stream. However, any sugar can do the trick, though orange juice is usually recognized as the fastest home remedy, or a glucagon shot if the diabetic has passed out. (Glucagon emergency kits are now available for home use for the diabetic today; again, not in my childhood.)

 
I have no real memory of my first reported low blood sugar outside of a medical setting, but to this day, I feel embarrassment if I remember the tales I’ve been told. Evidently, I’d been playing at home on the front porch swing when I turned violently on a young girlfriend. I was told neighbors actually had to help drag me from underneath the swing then as I’d screamed quite clearly that I WAS NOT going back to that hospital! I was also told I became violent in the emergency room, slapping at nurses and knocking a urine specimen across the shiny hospital floor. The story of my behavior mortified me, and I was sure that in our small town, the story of my “fit” was spreading like wildfire.

 
Childhood friends have since shared with me a couple of lows that turned into convulsions and/or a frightening event of some sort. Frightening to them; fortunately, I have no memory of these times. Still, I usually came out of episodes without hospitalization. Just a little bit of sugar. Not to worry, I have suffered nothing this serious since very young adulthood. The point is that such episodes are socially embarrassing—very important to young adults and teens.

 
Still, it is not uncommon for the public to think that diabetes is caused by eating too much sugar. Not wanting anyone to make a big deal about policing my sugar, I used to try to bear low blood sugar panics until I could manage to be alone. However, there I’d be, smack dab in the middle of a quiet study hall or a church service as the telltale weakness and sweaty flush of heat crept over me in a place where others were not even allowed to chew gum! I just so did not want to feel be noticed, even envied as I struggled with crackling candy wrappers. Early on I actually thought it better to just sit quietly and concentrate on NOT sweating or fainting. I must look and act “normal.”

 
To all sugar police: Never chastise a diabetic for eating too much to overcome a low blood sugar. The medical advice to take glucose tabs or drink half a Coke and then sitting for twenty minutes will not do it for most. This is because my reaction to that advice is, “You have got to be kidding me!” You want me to sit quietly while I’m disappearing behind my own face? Thank you, but I don’t want one bite, but the whole candy bar; not one cookie but a dozen and not just one sip of orange juice. I’ll swallow the whole glass. My favorite sugar is chocolate or cookies, though these take some time to digest and enter the blood stream. A good thing about an insulin pump is then, that the diabetic can also compensate for the intake of way too many calories.

 
Diabetes is a serious illness. Diabetics can live a “normal” life, and yet that daily life often conceals the real possibility of sudden death. Still, the vast majority of children and adults do manage to stay “in control” and save themselves and others. To this day, I am told I have remarkable powers of concentration. People say I portray “calm” itself. I’d say rather that I see no use in hysteria. Mine or yours. The child I was learned early on, and the adult remembers that hysteria is deadly or silly. Most diabetics, and many other “victims of illness,” are also simply not desirous of pity and we try so hard not to need help. Anything, to retain our self-respect as “healthy” human-beings, “cool” teens, or self-assured and proficient professionals. Maybe if our society could better encourage rational adults to use the words “help me,” we’d have more happy endings to stories. As a diabetic, I have always felt as if my life has been spent in trying to keep “my balance.” Balance in more ways than one! And I wish for the children suffering now that they could enjoy a life more carefree than mine has been.

 
I can see how insulin delivery was the most natural or sensible thing to study early on, but are there not also other methods and areas to study on the way to finding a cure for diabetes? I’m not enough of a scientist to know. Just asking and willing to listen and learn. JDRF (Juvenile Diabetes Research Foundation), among others, is sponsoring so many far-reaching treatments, including a biological cure. Of course, it’s a relief not to have cancer and as good as my life has sometimes been, I just don’t think one more child should face my path: managing T1D for 53 years and counting. The new motto: Type One to Type None.

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.

 

 

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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.