As you know, there is much to diabetes beyond what transpires within the doctor’s office. My life, the past 30 years, has included nearly all facets of diabetes-from the purely medical to the organizational, financial, political, research and international aspects of diabetes- but always with an eye on the need to rid ourselves of the scourge itself.
Being a diabetes volunteer was certainly never my plan, but from the first hour I gave to ADA, I have been on a most incredible odyssey. I could not have imagined where this work has led me.
In 1966 my daughter developed diabetes. Desperate for help, I turned to ADA. Almost nothing relating to diabetic children was available in those early days. When asked to lead a discussion group for parents, I helped create the original, bumbling, do-it-yourself support group. It was a Godsend. Before long it was obvious that we weren’t having trouble with injections or food exchanges, but the emotional impact of the disease was tearing our families apart. That’s all we ever talked about.
When the National Commission on Diabetes was being created, we watched it closely. It was designed to be broadly comprehensive, and include etiology, therapy, biomedical research, national resources, etc. The first time I ever spoke in public was to ask Congress to please include the emotional impact of diabetes on the patient and family, as part of the Commission’s deliberations. (There is a benefit to living in Washington D.C., although anyone is welcome to write his or her Congressperson.)
Since this subject had never been considered, I was invited to help the Commission define it and identify some experts. I’m proud we were able to get funding for the study of emotional problems, and to create a National Behavioral and Psychosocial Conference. This information is now available to all health professionals, but sadly, some still think behavioral studies are designed to teach non-compliant patients to “shape up!” There’s much work still to be done.
Some 300 of the world’s best diabetes research physicians presented before the Commission. I could scarcely have had a better medical education on the disease.
I served on the Board of ADA’s Washington D.C. affiliate and then as its Executive Director. When asked to plan a National Youth Program for ADA, I realized it was an important, strategic and political task, because it reacted to the very vocal people who were establishing JDF at that time. They were claiming, with a fair degree of truth, that ADA didn’t do anything for diabetic children.
To work on behalf of diabetic children is to get involved in camps. What a pleasure. There is no end to the good a camping experience accomplishes for both the kids and their families. They gain confidence, increase their self-esteem, and make lifelong friends who actually understand what they are living with. Parents and kids learn they can survive independently from each other. Wouldn’t it be grand if we had as successful a program for older people with diabetes
As National ADA Chairman of Fund Raising, I found myself in Las Vegas, persuading Wayne Newton to do five benefits in cities throughout the Midwest. He generously agreed, and we raised half a million dollars for diabetes research.
Along the way I met a 10-year-old boy, whose profound remark sent me off on another tangent. I asked him what he thought it meant to have diabetes. He pondered, then said, “Diabetes gives everybody the right to tell you what to do.”
Out of the mouths of babes! I realized that he was dead right, and that it was wrong. And so, unwittingly, I became a patient advocate. This took the form of writing and lecturing to broadcast the patient’s side of the story.
The International Diabetes Federation invited me to Vienna to tell the assembled doctors just what the patients expected of them. Imagine! This was Europe where the doctor’s word is law and patients are seen but not heard. I spoke in the magnificent Hofburg Palace, with its marble pillars and carved golden angels. There were five booths behind me translating my words into other languages. My knees were like noodles.
My favorite reaction was from a Japanese doctor who spoke little English. He asked for a copy of my speech to take home and throw in the lake. I was somewhat offended until his metaphor was explained as meaning, “like a stone that makes bigger and bigger circles on the lake.” Lovely!
Working on IDF advisory boards brought invitations to speak in various countries. What an education that has been! Australians had home blood glucose monitoring long before we even dreamed that patients could be so competent. I brought home our first machine. It was bigger than a shoe box and plugged into the wall. We had to rewire it from 220v to 110v.
Australia also had a great scheme where members of the diabetes association could buy insulin and supplies for only three percent over the wholesale cost. A small profit was sufficient to support the association because, of course, everyone joined.
In Nairobi, I told the doctor hosting the conference that I was interested to learn how diabetic children were cared for in Kenya; he said, “They just die.” How shocking! He explained that in the countryside people live in huts. They have no medical facilities and no way to get to any, no money to spend for care or medicine, and little education. There are many other, more severe tropical diseases to contend with, and they also have one of the highest birth rates in the world. Sadly, a child who slips into coma and death in the Kenya bush is not considered a very great loss.
During the cold war, in Moscow, I kept a very straight face while listening to the translator quote the doctor- “All 279,000,000 Russians receive a complete, free physical every year, and if anything is wrong it is fixed. Also, everyone who has diabetes has been issued his own blood glucose monitor” (This was 1984.)
In Japan, for many years, if you had diabetes, you had to live almost next door to your doctor. Doctors, by law, were the only people allowed to give injections.
For several years I chaired the National Task Force on Diabetes and Blindness. Although 12,000 people who have diabetes lose their sight each year, ADA has very little to help them and is likely to refer them to the American Foundation for the Blind. AFB does an excellent job of rehabilitation but has limited knowledge of the special problems of diabetes-drawing up insulin and testing blood glucose without sight, following a guide dog when foot and leg problems make walking difficult, and so forth. We had the opportunity to build a bridge between the organizations.
There you have just a few vignettes from my 30 years of involvement. We’d be interested to hear your stories, too. Do be prepared for adventure if you should decide to volunteer. You can have no idea where it might lead you. The job can be as close to real diabetes as holding a hand and drying a tear, or as far from it as selling Christmas cards and riding bicycles. Whatever you do, when you lend a hand to the cause of diabetes, you can be sure you’re working on the side of the angels.