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

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The Cash Cow

I suspect that many diabetics or their family members are afraid of poverty issues. From my diagnosis in January, 1962, until present—how much money have my parents and I already spent on diabetic supplies, insulin, and new inventions that promise to make me better controlled, though never cured? I do want to thank those responsible for the breakthroughs that have bettered diabetes care, and therefore, hopefully, the lives of diabetics.

 
However, a simple perusal of the internet tells anyone that there are many out there who fear our diabetic condition is perhaps a bit too lucrative to warrant a cure. There even seem to be diabetics who fear a conspiracy! After all, hospital personnel, medical research firms, pharmaceutical companies, health insurance companies, and perhaps even malpractice attorneys, not to mention the lobbyists of all concerned, all of these groups depend upon my condition for an income, do they not?

 
As to pharmaceutical companies, I am grateful for many of the improved products. However, what about the ones the diabetic uses that come out, with not only an outlandish price, but those that increasingly come out to be followed later with “recall letters” due to some functional problem or other. Shouldn’t that be shocking? Shouldn’t that be a shocking problem to even those who are not diabetic—the fact that medical equipment is found to be shoddy, if not totally non-helpful or nonfunctional? Are doctors then protesting or are some of them on company boards and/or do they hold company stock? Have most of us noticed the offices and hospitals overrun with pharmaceutical agents, and who holds their stock?

 
Do diabetics dare speak up? Can some arm of government fine, not so much the research arm, but the manufacturing arm of medical businesses that seem not so concerned with quality control and/or the patient? Or why should such fines and/or corrections be passed onto the consumer; that is, the patient? Just speaking of justice here. Actually, I am quite in favor of the companies who help diabetics that cannot afford expensive products for their care. However, is that free care coming out of a company pocket and/or again, a consumer or diabetic/patient’s pocket? The poor helping the poor, in other words.

 
The question becomes why, within all the parties there are to blame—the medical establishment (doctors, hospitals, and subsidiary businesses), pharmaceutical companies, and insurance companies, the patient is yet again made to feel like the victim. I am not only ill, I cannot afford my own care, sometimes even when I do work and work hard. God forbid, I should want savings for my family.

 
What of the T1D diabetic who, before 2014, had no health insurance, for whatever reason, and those were turned down for that “pre-existing” condition? No one in our mainly capitalistic country minds a “modest profit.” Still, why do I still have nagging suspicions that certain “higher management” or “leaders in the insurance industry” are living well at my expense?

 
Speaking of wealthy CEOs does bring us to the cost of health insurance. Before recent changes as to pre-existing conditions, as a diabetic, I was always asked by health insurance agents how much insulin I took or told point blank, “We sign up no diabetics.” More and more, especially on the matter of health insurance premiums, I’m grateful to know that diabetics over the age of 26 can supposedly get health insurance even if laid off or unable find a full-time job. After all, although a person like myself has always worked full-time and received company insurance, I was laid off when I was over 55. Luckily? I was allowed to purchase the same health insurance I’d had from a branch of my old employers. $1,000 a month. I paid.

 
At any rate, as I’ve worked exhaustively for many years in my life, I have noticed the trend of premiums going up and up. Also, I have learned while working and supposedly having “good insurance,” that the deal seemed to be that the pharmaceutical companies try to get a health insurance provider in their corner, thus giving the insurance provider lower prices for a whole lot of business, and/or vice-versa That is, the insurance company gets a drug company in its corner, again giving itself savings, thereby more profits, but meanwhile, the company insured must use the “drug provider.” I’ve never understood as an insured person what people were talking about as to choice in healthcare. The insurance company was or is chosen, the drug providers, the hospitals, and often, the doctors were then approved or no. I’m afraid my choices were all limited.

 
As a result, what I noticed was that no one had much choice as to a career either then—how good is it for our economy that people are working solely for health insurance? How good is that for a company even? I’m not even sure some of the rich have so much choice—depends on how rich, I guess. Yes, the lesson medicine teaches these days, I fear, is that one is rarely rich enough. Also, never quit a full-time job with benefits, no matter how bad the situation is.

 
More puzzling to the hardworking employee is the large company that increasingly divests itself of insurance oversight. Let’s say there’s a patient from the last two or three decades that does manage to stay employed with a company, while paying pretty high group health insurance premiums, various co-pays, deductibles, and so forth. However, what if that hard-working employee, temporarily a patient, then has some problem with a claim and goes to a Department of Human Resources or Personnel Office, only to be told that the department no longer acts on the patient’s behalf—no, no, that’s all up to you, the ill person! The Department of Human Resources no longer “fools with that.” My, my, my—that budding career you have is great isn’t it—as long as you and your children can stay on your feet and working as long as humanly possible.

 
Certainly, as the average American worker, I could say that if I wasn’t sick already, I certainly could have been made sick by having to argue with my insurance company over what was covered and what wasn’t. Furthermore, I’m sure you’re already tired of hearing me rage. However, if you are a lowly employee, or worse, if you are only “a wife,” you are only going to be able to talk with a call center as to an insurance claim. Perhaps more shockingly, you’ll find yourself talking with “a temp” who can do nothing for him- or herself, much less the patient who pays the premium.

 
At least one person who was probably fired from a health insurance company in a taped call once sadly told me: “The employees here (in the insurance company) get no health benefits at all!” No wonder attorneys are needed by individuals involved with healthcare. Heaven knows, all the companies involved have legal counsel I assure you. Not to mention those figuring out what “the average cost is” as opposed to what the insurance company is willing to pay. All I know is what most patients know—profits within even the companies in which we are employed, rarely go to us. One is always chasing that brass ring just out of reach. Sad, when that brass ring is not a promotion, a higher salary, but of all things, a chance at relative wellness. How many American workers do not suffer undue, crippling stress? The idea being, what about that Hippocratic Oath: First, do no harm. Of course, perhaps the medical industries do not take such an oath. Still . . . . . .

 
Now I worry that I have read that some want to cut diabetes supplies as offered by Medicare. I’m delighted to learn that recent health laws not only give diabetic children hope for the future, but they have in a very republican way offered grants to states who can experiment and find ways to keep health care costs down. (I was continually misinformed about this by one former a local Congressperson.)

 
Meanwhile, much of the research sponsored by the Juvenile Diabetes Research Foundation sounds very plausible. Of a number of clinical trials, I like the experiments on the implantation of encapsulated beta cells (no transplant drugs needed), all in a strip the size of a band aid under the skin; also, “smart insulin.” It adjusts itself to the sugar in your bloodstream. None of this is science fiction anymore—within the next few years, all might be so. Type 1 Diabetics, many children are funding their own cure! Isn’t that a joy and inspiration?! I feel reborn. Surprisingly, I feel younger these days, not older. Besides, I don’t feel any of us should die just to benefit the already wealthy. Don’t do it. Live and leave our poor scarred earth better in some small way.

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.

Hi! Hi! Hi!

Place the head of the lancet against the tender tip of a finger. Press the button so the needle can plunge forward into the flesh of the fingertip. I have never witnessed the beginner who did not flinch. However, if one has been successful in penetrating the skin, a drop of blood springs from the tip of the finger. If a drop fails to immediately appear, then the site must be “milked.” That is, squeeze the flesh until the blood drop grows big enough. Then place the drop of blood on a test strip and push the “countdown” button. At the end of thirty seconds, the diabetic’s near-present blood sugar can be read.

 

Many diabetics do actually live in fear of their glucometer (blood-testing) paraphernalia and the sudden pain of the tiny jab, then the sight and the messiness of blood. Even worse, though, are the numbers that are liable to flash up accusingly—211, 250, 310 (Hi, Hi, Hi) or 36, 42, 54 (Lo, Lo, Lo). A diabetic can function on fairly high blood sugar levels; however, a normal blood sugar is usually considered to be 70-120. So as the individual numbers appear, the diabetic can feel guilty again, guilty again, guilty again.

 

Besides, doesn’t it seem like the medical profession just love to “stick pins” into the diabetic? Stick, stick, stick! Still, I do appreciate blood sugar testing that is far, far better than it used to be. That is, blood sugar reading that can be checked more often and insulin levels, using faster-acting insulin that can now also be more easily adjusted to suit the results. Also, the diabetic is now actually allowed to perform that blood sugar test and mete out that needed insulin or sugar. In my childhood, at least to me, no regular or shorter acting insulin was given out. It was all one shot a day and eat no sugar. Were we all walking around high? I expect often—at least after those large, holiday meals. (At least, I had a tendency to want to take a walk after those or any Italian dinners.)

 

In the past, there were not even A1Cs (tests for blood sugar average over previous recent months); rather a diabetic’s regime was actually judged due to maybe one blood test a month in a medical setting! (As I had no veins, not pleasant.) Even worse, in the not-so-distant past, diabetics used to have to test their own urine to get some sort of daily sugar reading. As a child, I was given a small, plastic urine testing kit. It contained a test tube, a dropper, and a bottle of what was known as Clinitest tablets. I think it was five drops of urine and ten of water needed for the test. I’m not sure, but after this concoction was gotten into the test tube, I was told to add one of the toxic blue tablets. The mixture would then fizz up into the test tube and “boil down” into a color. Navy blue stood for negative, no sugar in your own urine. Dark green and various browns meant the yellow urine held varying low amounts of sugar. Bright orange—well, that horrifying shade signaled 4+, 4+, 4+, too much, way too much sugar in the urine. Again, guilty, guilty, guilty, must be your fault, your fault, your fault.

 

More to the point, what girl on the brink of adolescence wouldn’t rebel at the urine process? I considered the whole process not only embarrassing but disgusting—the very idea! More importantly, the tests were certainly not enhancing to a young woman’s growing sense of herself as attractive to the opposite sex.

 

And here come the points of this particular blog, ones that I think can be gathered from my activity: by definition, and recent developments aside, a diabetic’s blood sugar is simply not going to be perfect. True, with recent continuous glucose monitors (CGMs or sensors), now inserted once every few days in much the same way as the insulin pump, the diabetic can get much closer to what I heard someone say was “a smoother ride” through life.

 

Of course, 1) yet another stick of needle into the body is pretty unwelcome, no matter what one’s age—but to a child? A child on a continuous basis? Say, we’re inserting on a certain day: one stick for a glucometer and then we do some taping; one stick for the insulin pump and then we do some taping; then we test our blood sugar to be sure or to calibrate (check our tester’s correctness) every few hours, not to mention if the diabetic, a parent, a nurse/teacher at school wants to check a child’s blood sugar for a “hi” or a “lo” during the day or while sleeping—is it any wonder that the medical professional or a caregiver can at times be seen as “the enemy”? The patient can’t just see things right amore—pain and “I’m trying to help you” get all twisted up. Give to JDRF, if possible, an organization for diabetics trying to pay for their own cure, often on behalf of children.

 

2) As by definition, the diabetic can’t be quite perfect, what does all this trust in numbers do to self-esteem? Yes, I know, I’m too high. Again. Yes, I had a lo. Again. When my own numbers are on target, and indeed, my A1cs are usually quite good—I always thank whatever gods that be, that I have a brain and can at least figure what some numbers mean and/or what happened in some given unusual situation that resulted in “a bad time.” Note: At least in my experience, having “a cold” and/or being “stressed to the max” creates a high. I don’t have to eat a piece of cake! Again, only my personal experience. I can’t speak to yours. My point? Be less judgmental, and yes, be careful. In the giving of insulin, I’ve found erring on the side of caution best as aiming for perfection can be dangerous?

 

3) My last point, and I expect one minor to many, is that even people with “a disability” do not lose the desire to be attractive and yes, I do think this has to be considered. In some ways it has been, what with all the paraphernalia, needles, diets, pump holders, and exercise regimes designed for the diabetic. However, I know personally that advice like “Don’t drink beer when you’re with that young man” never worked with me. Nor did advice on what to show and what not to show as far as dress went. Just sayin’ and I don’t mean to make readers uncomfortable about their own children or themselves. In each family, all must be determined according to personal sexual or spiritual values. However, I don’t think the desire to be attractive can be ignored. Sex or even being physically competitive, yet again. Gotta look good for the job interview or on the track, right?

 

My final point, though, is I don’t want anyone to have to make the journey I have made during fifty years now with diabetes. No one. If I could spare you, I would. Of course, I have about the same power I had as a child. All I can say is: Let’s live on. Something might happen. Keep working, keep insisting, changing, hoping or praying. I want to encourage not just diabetics, but anyone with a chronic illness, to do your best to live on. Don’t die outside or inside. Live and prosper! Maybe one day, we’ll all “make it,” imperfect though we are.

A Normal Life!!!

cinda0

A NORMAL LIFE

Diagnosis: January 1962-Present

BEFORE

scan0015

-Innocent

-Good in school

-Fun-loving

-Oldest child and very responsible

-Faults? Not athletic, not very neat? A bit bossy?

              Why me? I had no words.

 

EARLY YEARS

-Normal 1950s familycinda2

-Small town

-No other or few child diabetics in the area

cinda3An unwelcome intrusion

A MIXED BAG BUT A GOOD CHILDHOOD

-Parents shock and dismay   -I stepped up to the bat and I was a girl!

-Popular misconceptions      -I learned and so did my family

-Community ignorance         -Carry a big purse

-Could I have become a teacher earlier?

-Instant empathy and interest in others

cinda4                                             cinda5

cinda6  THE BALANCE BEAM

cinda8cinda7Watch that perfectionist in you!

No extra drugs, thank you???cinda11HI!HI!HI!cinda10                                                 cinda12                                                      No glucometers

LO!LO!LO

 

PURSUIT OF A LIFE!!!

cinda13

                      cinda15Insulin, syringes inside

cinda14            cinda16        cinda17

cinda18

Taught, lived with roommates and alone, pursued graduate degree in Tucson, AZ, studied and grew. Lectured, made new friends, was POOR but graduated with NO LOANS

A GOOD JOB

($$$, HEALTH INSURANCE, RESPONSIBILITY, STRESS)

cinda19Friends

Sisters

Nieces

Nephews

Community Activities

cinda20Glucometers YES!!!

cinda21

NO! NO! NO!

No more shots, please!

YES! YES! YES!

cinda22 Sexy?    cinda23      cinda24

cinda25 cinda26 cinda27 Talk,talk,talk

A FULL LIFE

cinda29      cinda28   cinda33                                                    cinda30   cinda31

OUTREACH

Type 1
50+ years, a veteran
Highs, lows, rebellion, family and
school involvement, relationships, college life, travel, careers, medical attitudes, insurance, the cure.

Cinda Thompson
Blog: type1ct.com

Read one woman’s journey of life with Type 1. Share your experiences or opinions if read.
All ages, family members, friends welcome and needed.
React! React! React!

 

                                                                 

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.

 

 

scan0015

 

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.