“Do you have to take shots?”

This is the question I’m most often asked about my diabetes. I think the idea of giving oneself a shot horrifies people. A person newly diagnosed with Type 2 (non-insulin dependent) diabetes 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 1 (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! 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. For a Type 1 diabetic, insulin is the enzyme that is no longer made in the Isles of Langerhans within the pancreas. Insulin is the enzyme that the body needs to convert carbohydrates or sugar into energy. By the time of my adolescence (1960s), what I used was a long-acting insulin that supposedly kept blood sugars under some kind of control for an entire twenty-four hour period.

In the “old days,” the insulin syringes were still made of glass. They were expensive for my parents and absolutely not disposable. 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. Then girls of my age, girls whose popularity I admired and desired, stopped to watch as my insulin was deposited into the refrigerator, or else they painstakingly kept their faces rigid, pretending not to watch. For the rest of my painful adolescence, self-consciousness became a constant state of mind.

My own parents couldn’t handle the ordeal of giving me shots. My father traveled out of town for work a lot, not to mention I believe he had an absolute inability to witness his daughter undergoing any type of pain. My mother, by her own admission, got “squeamish” and confused by medical paraphernalia and talk of drug dosages. On the rare occasion when she was faced with actually having to give her child a shot, she made a terrified face. I couldn’t stand what I took to be weakness. No time for faint hearts here; I simply decided I’d just take care of myself. Does everybody understand that? I tried to make my attitude obvious with some demanding faces of my own.

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. (Minors were not allowed to visit up in the rooms in those days, and now, dolls are sometimes used for demonstrations rather than oranges.) An orange has no feeling, of course. Seemingly no sense that its body, its tender membranes are about to be invaded by a sharp and painful needle. There is no trickling red blood (gotten if a diabetic hits a “wrong spot” over a blood vessel and must totally start all over). Needless to say, I rarely re-injected, blood or not.

During most of my lifetime, I have not given myself shots in front of people. Some today actually consider this an unhealthy attitude, but I was extremely self-conscious about being different, and so medication became, to me, a very private matter. I was a proud adolescent, and I simply memorized the diagrams in the “shot brochures,” the ones picturing the body with certain sections shaded as suitable for injection and absorption. The upper arms and thighs, the hips, and even the stomach are all “fair game.” The diabetic is also told to vary the injection site, to space the injections out say across the leg or down the leg, and then, the child should perhaps move to the other leg.

I’m almost sure I gave my first shot in my thigh since that site had been mentioned and re-mentioned in the literature. Also, when I’d tried to inject my upper arm with the opposite hand, I’d found the reaching over myself much more difficult than one would imagine, perhaps due to my short arms. However, I could reach my youthful, then “good-looking” legs–the same legs I wanted to look good when I wore a swimsuit or shorts, or whenever I sported whatever tan I could muster. No matter what healthcare professionals swore, my blunt needles left marks. I had “tracks,” I thought. At times, I suffered bruising.

Actually, the process of injection I preferred as a teen was to go into the bathroom by myself, prepare the syringe, and then swivel around to push the needle through the skin on one of my upper hips. All medical advice aside, I used these sites as often as I could. In other words, I tried to give myself shots at a site where they hurt less, but also where any telltale signs were less likely to show.

Nevertheless, I was finally coerced into using my stomach. I mention this injection site, because I’ve found so many find the location rather repulsive. Today, I cannot remember whether my parents or various healthcare aids had reported me, or whether I had actually made the mistake of admitting to never having tried this particular location. I do remember a nurse I especially liked (and one so chosen for the assignment, no doubt) stressing to me that insulin could be better absorbed if injected into the stomach.

Also, I remember that finally, finally I cried about the whole procedure. I cried as my mother stood cooking breakfast at the kitchen stove. She’d made me stay in the kitchen, I suppose, because the doctor insisted she be strict and make sure I used a stomach injection. At any rate, I sat as if “on display” on a hard kitchen chair, needle poised while others darted around me, and finally, I cried. I didn’t want to take shots at all, but I had to, and over and over again, and in a soft spot now, and I knew it was going to hurt. It did. At least after I’d proven I could do it, though, I was finally allowed my privacy again.

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 possibly 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.

A shot—not matter how welcome the result—is still an invasion of the body. These days, however, the injection needles are finer and the pain is minimal. The insulin is better and faster-acting, perhaps the greatest step forward. Insulin is also now of an improved human derivative, unlike the old insulin from animal derivatives, which after frequent use, left scarred sites. These are skin sites where my scarring is thick and hard. Indeed, one need have no fear of my feeling the pain of any needle, if one can get a needle through the scarred skin at all. My upper hips and thighs, my stomach (though never flat) have all become riddled with hard spots. If I was going to use those old sites, I’d practically have to stab myself with the needle, and it’s doubtful I’d get the full effects of the insulin. I also perhaps need to stress that even the more modern and improved insulin does still seem to cause or leave fatty deposits underneath the skin. The word “fatty” is never one a young girl, or an older woman for that matter, wants to hear in connection with her own body, much less her stomach!

Of course, after my initial negative reaction to several shots a day, I did finally return to a doctor. I’d finally understood that I simply had conflicting emotions as to medical technology. I remain grateful that death is not the automatic end to a diagnosis of diabetes; however, the medical invasion and technology required does not make life simple. What medical professionals sometimes term “a normal life” is not normal, is what I’ve heard many diabetics say. At any rate, I got a new blood sugar meter. Taking one’s blood sugar these days involves only a pin-prick to the finger or arm. I grappled with the blood sugar numbers and the results they indicated in terms of regular (short-acting) insulin.

I continued to take my one shot of long-acting insulin in the morning, and then more shots of short-acting insulin as needed. Four or five shots a day is four or five shots a day. (This older short-acting insulin was not as good as today’s.) Of help, finally, was and has been the pen, instead of a syringe and needle, for injection of both short- and long-acting insulin. This dial-up instrument does allow one to indicate and inject precise, even very small amounts at one time. The needles are relatively painless. The key words remain, however: needles and inject several times a day, in addition to taking blood sugars, mind you, in order to get the correct dosage.

However, it’s not that I’ve spent my life thinking about shots. This is one way I know how adaptable human beings can be. Always carrying a purse, even in the days when wearing one was not fashionable, I simply learned to carry my paraphernalia everywhere. I’d excuse myself from whatever dinner table I was at and go take a shot. (Many diabetics have memories of private moments spent in cold and unfamiliar bathrooms. However, I still prefer this method to taking shots in front of people getting ready to eat–perhaps something from my Southern upbringing.) Still, shots or no, I have traveled freely, and like the woman of the tennis article, I’ve tried to encourage other diabetics to live a full life. I’ve told the newly diagnosed that one cannot let five minutes ruin the whole day, not even five minutes repeated three or four times. Just give the shot, give two shots, three or four injections, and then go on with the day. Believe it or not, the shots do become routine. Most diabetics can even forget to take one now and then! Not a good practice, of course, but that’s just how routine taking a shot can become, how “normal” a life, the diabetic can live.

Today, the more convenient way to receive insulin is through the insulin pump. The pump is a small plastic device that holds a cylinder of more modern short-acting insulin. The insulin is drawn into the tube by a needle, and then hooked onto the end of a tiny catheter (plastic tubing). The pump itself can then be rewound with the tap of a button, and the syringe piece can be inserted into it. The needle attached to the catheter can then be inserted under the skin, but pulled away leaving the catheter behind. Regular basal rates of insulin, pre-set by the diabetic will then go out at regular intervals. Boluses or extra boluses of insulin can be taken according to blood sugars from one’s meter and carbohydrate counts as the diabetic eats throughout the day. Sounds pretty complex, doesn’t it? It is, but oh so many have learned the process, children among them. Notice, there’s a lot of paraphernalia to have handy.

Later, an alarm will actually remind the wearer when insulin in the pump is low, and it’s time to change the paraphernalia and the injection site. However, the pump does not yet work “automatically.” The “works” (junkie talk) have to be changed and so another injection of the tubing is needed at least every few days. Yes, as to taking blood sugars at all times, and at the time of another insertion, needles are abundant. 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. Never mind, the fatty deposits left behind by the more modern fast-acting, but better insulin.

Now, for those who can afford it, a blood glucose sensor (continuous glucose monitor or CGM) can also be injected in yet another, separate site on the stomach, allowing more continual blood sugar balance and insulin control. Of course, even with both machines, certain amounts of insulin still have to be set and taken at a regular rate (basal rate), then the blood sugars have to be taken before meals, and numbers have to be set in order to take a bolus of insulin to cover the carbohydrates. The sensors also have to be tested and checked. Again, notice that all of this can get fairly complex, though recently CGM’s and pumps are being developed to signal one another.

Again, the pump, as well as the sensor, “works” have to be changed fairly often, though the size of the needles and the ease of injection have improved. I want to stress that—no process hurts as much as it once did. Still, in order to use the pump, I did have another obstacle to overcome—though detachable, I actually have to be hooked to something on pretty much a twenty-four hour basis. Being bionic man or woman is not for everyone. How sexy is tubing hooked to one’s stomach? What about those who are athletic, or those who are worried about grace of movement, i.e., dancers?

However, I’m still a fan of the pump. Diabetes becomes more manageable on a daily basis—and that’s how one has diabetes. On a daily basis, day in and day out. (Though pump supplies are covered by some insurance plans and Medicare; to date, sensor supplies are not covered by Medicare and/or many plans.) The aim of all improved methods are to get he A1C (average of blood sugar levels) down for all diabetics, not just those with Type 1—the lower number on an A1C, taken every few months and/or through a home system, mean better control, and hopefully, a better quality of life, a longer lifespan for diabetics.

Supposedly, all progress points toward hope for diabetics. I had no idea what that h-word meant in relation to myself, however, until I attended a convention on diabetes, 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 1 diabetes as does many a prisoner sentenced for life. I had not allowed myself to think of not having it.

Suddenly though, I 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.

Evidently, the scars I once had and continue to carry as a long-time juvenile diabetic are more than skin deep. I’m afraid that despite my sudden realization of what “hope” can mean in my life, I can still get frustrated with the regime I am so routinely expected to follow by health professionals, pharmaceutical representatives, insurance reps, and even people at large. These days if I listen to “the private sector,” I actually get the idea that diabetics had better take care of themselves or else! The term “pre-existing condition” seems to mean that the condition is no one else’s responsibility, and maybe even it’s my fault, right?

I can also get angry at what new inventions still dictate that I must do to my own body, the body as in the “temple of the soul.” I know now that the rebellion I so often felt as an adolescent was somewhat normal, though it went deeper—in addition to parents and teachers, weren’t all these medical people trying to control my life? Was medicine itself trying to kill me? However, I think anyone can see and analyze how dangerous the attitudes can become, and perhaps, how self-defeating.

I have tried over the past years, to constantly cultivate 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’m afraid I’d still be tempted 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 parents and children that I now feel the most sympathy.

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.