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.
2 thoughts on “Type One Nation”
Thank you for participating in the St. Louis event and for sharing your experiences!