Down to Sleep

I had trouble sleeping. After I’d been diagnosed as a Type 1 juvenile diabetic at age 11, 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. 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. I’d beg. This was how I became twelve years old.

Finally contacted, the doctor prescribed “something mild.” I have no recollection of what the pills were, but I did feel early on that I didn’t like taking them. I didn’t think that at my age, I should take what I thought of as sleeping pills. From somewhere, I’d gotten the idea I was becoming addicted, and so I “broke the habit” very early on. A good thing and one reason I’ve never had a big interest in drugs, unlike many others of my generation. (That and the fact that I already had to take shots daily—why would anyone want to do such a thing voluntarily?)

As I grew into a teen, I grew interested and busy with many school and community activities. I was also allowed to watch television later each year in order to fall asleep, and I developed a more normal sleep schedule. I lived what I had determined I absolutely would live–what I called “a normal life.”

Of course, in the days when diabetics took just one shot daily, perhaps my insomnia was a result of high or low blood sugars—who knew back then? (Certainly no one told me and as daily or hourly blood sugar tests were not a possibility then, perhaps most professionals did not know.) 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? I had been in a coma at diagnosis from too high blood sugar, so now would death through insulin shock take me unaware?

Waking up in the dark with that “falling feeling” became a common occurrence, though it was not the nighttime darkness that frightened me. I just made my adolescent way to sugar near the bedside or to the refrigerator for food. Milk was a comfort to me then; however, my mother, who would also sometimes wake to dart up beside me to stand in the yellow light of the fridge, was not. As an adolescent, I was often deeply angry with my mother if she hovered too near during lows like this. Of course, I would have argued at the time that my mother was just as often angry with me, and in the way of mothers of her generation, perhaps overly critical of me, her somewhat thin-skinned young daughter. I just felt my mother was overly protective. She’d actually drop me off at the hairdresser’s for a perm and remind them to watch me as who knew when I’d have “a spell.” Why, anyone could see, she was treating me like a child! Like all teenagers, I wanted to take care of myself. I wanted to be on my own.

To complicate matters, I’m afraid being told by that same mother that perhaps diabetes was what caused some of my anger did nothing to mitigate my adolescent fury. Why, she was the one who caused my anger! The possible emotional effects of insulin treatment and/or low and high blood sugars had never been explained to me, the patient, at all. So at whatever specific angry moment my mother thought to blame my anger on my diabetes, I thought her comments only a manipulation. Some fault of mine was once again being cited as a reason for her own “unreasonable” will and fury.

Of course, I now realize that having diabetes as an adolescent actually embarrassed and humiliated me, though I put on a brave and smiling face. I just so wanted to be like all the rest, to be normal. I didn’t want special eyes on me, as happened in biology class when I felt all students surely must be turning to look or casting sidelong glances at me when diabetes, “the defect,” was explained.

As my mother was overly protective, so was my father. My father traveled some for his job and so perhaps was not “on duty” as much as a mother concerning illness at home. As to my father, he was much more over protective in the “boy department.” Why, the man actually thought he had the right to pass or not pass on my boyfriends, and yes, I certainly was anxious to get rid of that “number he did on me” as I went to college (and he did, I have to say in all fairness fall back to a more advisory position). However, he did always hate it that I did not wear an alert bracelet/necklace. Indeed, any problems I had as an older adolescent/young adult were not, in my opinion, due to me not being somewhat noncompliant patient so much as to the typical teen hormones coupled with my own overprotectiveness of my image.

My parents were on the right track. I was having trouble with identity. I think my feelings were and are akin to what certain cancer patients have told me they feel when everyone in the world keeps asking them, “How are you? How are you really” Really, who wants to be associated with a “disease” or with something that is “defective”? I didn’t, and don’t, go around declaring myself a diabetic. I have to admit that I still don’t often see why everyone in the world should know this about me right off the bat.

As a competent young woman, I simply felt there were more important things you should want to know about me, other things that should be more interesting. Yes, any “hospital situations” were usually caused by the fact that I had not advertised to everyone in the world, and sometimes not advertised yet even to my close friends, that I was a Type 1 Diabetic. I wanted to be Cinda to new people or friends, thank you. We’d get to “the other” later. Thankfully, my siblings and good friends never made much of my medical condition. I can only say that with each year I grew older, I did grow more comfortable with the label.

In celebration of my new job, as a young teacher, I traveled in Europe, and it became obvious to me that if I suffered sudden illness while out of my country, no one would know what was up. Furthermore, a medical trip to any medical facilities would certainly be much more complicated due to language issues. During one time of “iffy” health in Europe, it occurred to me that if I didn’t make it back to the hostel for my supplies and passport, my family and my father would never know what had happened to me. I rallied, but after that, I immediately purchased medical ID items and have worn them ever since, though even today, I keep my medical alert bracelet turned in. After all, it’s best not to have “the condition” come up in a job interview, right?

Not only during my adolescent years, but in my twenties, I did develop a great distrust of doctors. The issue is easy to see now as one of control. I can’t pick on my small town general practitioner who had to treat about a million people at one time, but once I’d moved from there, even then it was not uncommon for a doctor to admonish a diabetic patient for lack of control when during that time perhaps the diabetic patient was doing all that medical science knew how to do. All the dietitians knew to do. Even today, when the “control and blame attitude” of medical people has eased up a bit, comes the question, “Are you/did you always, every minute of every day, take care of yourself as well as you could?” Would anyone answer, “no” or “I didn’t always think about it”?

All I know even now is that I took my shot every day, and I did not eat much sugar. In fact, I often went on a diet, given to me by dietitians, for one thousand calories day diet. The fact that this regimen is now considered “starvation,” is not something for which I assign blame. After all, as a young woman, I was very concerned about my weight, and I asked for the supposed solution. At the same time, I began to notice that his physician or that did not, indeed, know a good deal about diabetes or even more importantly, that this person or that was what I termed “an alarmist.” My response to such alarm has always been that one bad blood sugar can be taken care of, okay? Let’s not stop the world, at least not my world. I have too much to do!

Yes, I grew into an overachiever. I overachieved wherever and whenever I could. As far back as high school, if someone told me I didn’t have to run in gym class, I ran. I made good grades. I dated the best I could manage, as I thought girls were supposed to. I graduated in the top ten in high school, and from college magna cum laude. (This would have been more what my father wanted, maybe? After all, didn’t there have to be some reason his child had been struck down in the first place. She was special right?) As to college and young adulthood, family anger naturally dissipated, though the nature of my anger had also begun to change. I was not now so angry personally, but I took an interest in wide issues—i.e. Civil Rights, the war in Vietnam, women’s rights, and even disability rights.

Though I never really saw myself as disabled, I do believe that living with diabetes has made me a more caring and empathetic person. I became friends with college students in wheelchairs, those who were blind, and so forth, and I didn’t like it that others almost didn’t see them as normal people with normal feelings. Rebellion was a watchword during my college years, and not to worry, mine never took any violent turns. Again, I often didn’t sleep out of sheer excitement and love of learning. Sleep meant wasted time to me; there was so much going on!

After college, when I became an English teacher, I really did read and mark those essays every time, and I sincerely cared for my students. I worried over each and every conflict that I could not fix in my life. When after being a teacher for several years, I decided to attend graduate school, besides going to school, I worked constantly. My parents did not have to pay fees, and I took out no loans. Of course, I did not sleep well. I worried, and I studied, and when I suffered a bad breakup in the boy department, I just knew it was all my fault, and my mind raced. Any failure or setback in life was my fault. You see, I had to analyze my mistakes, find out how to do better, and go back to achieving!

What I know now is that during certain bad moments I’ve felt as if I was “hitting a wall.” No matter what I felt, sad or angry, the outcome would not change. That’s the sense of defeat I felt inside; kind of like what I’d felt about having diabetes, right? My feelings about having it didn’t matter, did they? Having diabetes, after all, perhaps became my first hint that “my powers” were limited. Certainly, my opinions or feelings could not change the world.

Later in my work life, any conflict became of concern to me. I was not so much a competitive person as one who wanted everyone to cooperate be a member “the team,” the community, a family value. People who thrive on conflict became anathemas to me. Bullying of any sort was my pet peeve. I can see now that people’s pettiness is what gnawed away at me. So many face really serious issues, life and death issue. Why care so much if someone suffers from a minor flaw, or has this inability or that? After a bad day at work or a bad meeting in some political or social organization, I’d play scenarios through my overactive mind—surely, all could come to a rational and peaceful solution. Peace was the overall watchword of my generation after all. I had to grow and mature some before I realized that change comes ever so slowly. Nevertheless, I’m now lucky enough to live in a world where all promises to be well.

In fact, I believe that having a chronic condition has taught me very, very much in the ways of compassion, determination, persistence, insight, and so forth. I‘d like to get new diabetics to realize that living with the condition will also contribute to their life experience—not in ways they may appreciate right now, much less be able to predict.

Any person who suffers can to some extent become, I think, a better, “a more layered person” (as long as that person doesn’t seek to escape suffering through artificial means and as long as they don’t, in the way of many suffering depression, indulge in so much empathy that they jump right down into the well with sinners and sufferers.) I’ve come to know that it’s such a gift in life, really, to be able to talk with just anyone, to lend a hand, a word, to lend an ear. There are successes; there is sunshine; there is so much in life that is truly a gift. In other words, I learned immediate empathy back in that hospital room of diagnosis, Room 210—important to an artistic type, I think, as opposed to being manic and self-destructive. Important to a human being in today’s world to know one can be badly hurt, one can be disillusioned, one can be lost—however, one can also be found and find one’s way to meaning and a better life. Reading, meditation, peace of mind helps one to sleep.

In short, though I once refused to talk about diabetes because I honestly had also believed I never thought of it, and so now I try to live and speak of it more openly. I have opened up, and behold, there is light. I do not really hate myself or the failure of my own body any longer. I try not to think of myself as unhealthy. In fact, I think I have realized that liberated woman or no, I had actually become somewhat of a martyr to my condition—I considered living with diabetes my problem, and I would face that life, while not forcing others to do so. That left a lot of people out didn’t it? Didn’t show much trust or confidence in those I thought I liked, loved, or respected.

I also once received a special insight when I attended a convention on diabetes as a middle-aged adult—a young lady there talked to me about her diabetic sister. She said she thought her sister perhaps associated having diabetes with her mother, “the caretaker.” Imagine that—turning your anger on a caretaker! I am, to this day, so grateful for that young woman’s stray remark. You see the strength of one person helping another? She didn’t even know it, but she had helped me see yet one more possible error to my ways. One that I could and hopefully did to some degree, correct as both my mother and I grew older and acted more maturely.

Oddly enough, I have never been interested in being a poster girl for diabetes, and I am only somewhat interested in better medical management. Better drugs, finer needles, the use of insulin pumps are all well and good. Very good, in fact, and I don’t want to seem ungrateful. However, for the first time in my life, I admit that for the sake of the innocent child once within me, or for some other child, a child like I used to be before I accepted the finality of a lifetime sentence—I’d like to see others escape that sentence.

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These days, I keep a photo with me. It’s a photo of me as a child before diagnosis, a child with slapdash ribbon in her shoulder-length hair, and a child with a twinkle in her eye. It’s her attitude I want to get back to, and the one I’d like to leave all children with. Many patients and medical workers today have remarked to me that researchers will find a cure, and though I times wonder if anyone morally committed to setting “my people free,” I hope so. All I now know is to encourage all, especially the children—“Come on, you can do it.” Together, we will overcome.

I like to think of myself as struggling not so much out of a feeling of low self-worth, but out of a knowledge that I deserved a “normal life,” or the best in life because I can sometimes be a needed and worthwhile being. I now try to look back and see the person that diabetes helped make me: the kind and interested teenager who volunteered and stayed committed until the end of a project. The teen and young woman who was deeply concerned about others and about social justice. The young woman who tried again and again if she met defeat in life. The young person who, no matter how little she had as a member of the working poor, found a bit of money to give to others. The adult who worked for peace in the everyday workplace, who worked for equal rights for women, the senior who, not having been able to serve in the Peace Corp due to type 1 diabetes, now cannot wait to visit and see the whole world. I sleep better and the girl within now dreams or envisions a shimmering world of which she can be a part. Diabetic or no, come join me. Let’s enjoy the lives we have!