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Keep on Marching

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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

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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!

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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.

Type One Nation

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cinda16
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.