World Diabetes Day in Taiwan

Taiwan's campaign, "Changing the Future of Diabetes in Taiwan" is focused on bringing attention to education and the growing number of type 2 diabetics and to preventing diabetes, which, of course, does not apply to type 1, though this is not made clear. Due to the UN's focus on children, there are some voices from children that are being heard on the periphery at least, and for that, I am grateful. Children have a way of tugging at the heartstrings more than adults, even though there are plenty of adults who are living with diabetes, many of whom were diagnosed as children, particularly type 1's.

In honor of World Diabetes Day, diabetes advocates in Taiwan held a drawing contest for children with diabetes, inviting them to share their feelings around diabetes and capture the mood of daily life with diabetes. The entries were amazing. This drawing won second prize, and is entitled "I Can Monitor My Own Bloodsugar Level." The artist is only six years old! Amazing, amazing drawing. I think it captures part of life with diabetes so well. The little girl is crying and thinking about all she has to do before she can eat, while the boy is seated, enjoying a literal gift of all the food on table, prepared and ready for immediate consumption. Click here to see more of the entries. They are remarkable. The Grand Prize winner was an eleven year old girl with a drawing entitled "At the Moment of Hypoglycemia." The blue and purple swirl around her and the tear running down her cheek captures the feelings that accompany a low very well. She is surrounded by people, but in a swirl of feelings all her own. She is very much alone. The alarm of her friend is visible and the little boys snickering or talking about her is perfect. That look on their faces! I'm amazed at the artwork these kids did. It says so much more in pictures than I can say in words. You seriously have to take a look at the top entries. They're awesome!

I know that type 2 diabetes is an epidemic in this country and around the world and does deserve attention, so I am proud of Taiwan for stepping up for World Diabetes Day, but I wish they wouldn't completely ignore us type 1 adults. It's World Diabetes Day--that includes us! Actually, in Taiwan, many of the festivities are happening on Saturday, November 18th instead of today. Taipei 101 will be lit up from now until the 18th, so it'll honor WDD for five days. The Taiwan Declaration on Diabetes (click here to read in full) demonstrates a 5-year plan of action. That said, there are quite a few things that bothered me about the declaration, which I read every page of. For instance, it starts out like this:
"The number of people with diabetes in Taiwan has doubled this decade, surpassing more than one million (Taiwan has 23 million people total) as a result of westernized diet habit and inactivity." It goes on to praise the medical system in Taiwan for "covering all of their nationals, saying "We take pride that people with diabetes can now have the most favorable medical care with efforts invested from all strata of the community." It does say that the general public misunderstands diabetes and that "even medical professionals have not fully recognized the psychological needs of people with diabetes." That last part is true enough.

Actually, it has several ways of addressing these issues, but from my perspective as an American type 1 diabetic living in Taiwan, it bugs me that there is no specific mention of type 1 diabetes anywhere in the 18 page document! And again, it attributes diabetes to "SAD." Nor is it mentioned that diabetics in Taiwan must pay 100% out of pocket for all of their test strips, and strips cost about $1 each no matter what glucometer you have! In fact, in their video they mention how "all aspects of diabetes care are covered in the National Health Care plan" (insurance), but nowhere do they address this important issue. How can you have good control as a diabetic if you can't afford test strips and are not testing your bloodsugar? Yes, medication, diet, exercise and insulin are important. So are doctor visits, though they also fail to mention how inadequate those hospital visits can be, rushing you through the visit like a piece of meat on a conveyor belt. There is no real time to talk, to answer questions, to plan or look over your bloodsugar logs, etc. Sure, it's paid for (for the most part) by the government, but what you get is sub-par health care. And yes, self-care and patient responsibility is key, but with that comes frequent glucose testing which will not happen if people have to pay out of pocket for each strip! It seems the very people who are advocating for diabetics in Taiwan are also misleading them and the general public and doing type 1's a disservice, and I find it very frustrating on today of all days!

There is an opening ceremony in a couple hours (5:30-6:30pm) to speak to the public about the first UN WDD and proclamation of the aforementioned Taiwan Declaration on Diabetes from the national diabetes association, but it will be in Mandarin and after reading their propaganda (which is what they call it, actually!), I'm not sure I want to waste the money for a cab ride to and fro (seriously, pay day is tomorrow and I'm broke). There's a lot of buzz in Taiwan right now about their exclusion from the UN, so I have little doubt this is part of their campaign to lobby for inclusion in the United Nations, separately from China and will be, in part, political.

I do, however, plan to celebrate on Saturday, taking part in a Diabetes Walk and Fair at Guting Elementary School where 600 people are expected to walk. They plan on walking in formation of the diabetes circle logo for 246 steps, to represent the estimated 246 million people living with diabetes worldwide. I like the symbolism in it. In that vein, I did my own solo walk today, and, as suggested, took the first 246 steps to consider the global burden of diabetes and to remind myself that we have a shared responsibility to improve the lives of people living with diabetes everywhere. So, I walked. Today, alone, which is how I sometimes feel living with diabetes. On Saturday, I will walk with others. It seems right.

Have you tried to count 246 steps? It's kinda difficult if you aren't walking slowly (no, I wasn't even chewing gum at the same time or talking). I'm pretty sure I took 246 steps, but trying to count and contemplate the burden of diabetes was too much for me, so I contemplated afterwards. 246 steps is not a lot. The above photo is the view from my 246th step. You can see I stopped just short of the North Face store, so I had a view of their motto, "Never Stop Exploring," which I find so fitting in relation to diabetes. Never Stop Exploring...for a cure, a better way of doing things, a new recipe or trick, new research or the best technology, a new response in my body to insulin or exercise or hormones or food. Whatever it is, with diabetes you really should never stop exploring.

So I took a moment of rest on the red door with a view of the motto and tried to think. Think about my diabetes, which I do all the time, but often in a sort of auto-pilot sense of the word. I thought about it and about what it means to me to be a diabetic, an American, a type 1 living with a chronic illness like diabetes in a country like Taiwan. And I tried to think of all the others in the poorer countries of Africa and Asia, and our very own poor here in Taiwan and in America. Heck, what about so many of us who are not even poor, but folks like myself who sometimes have to skip glucose tests for fear of "wasting a strip" or use that $20 for a doctor copay again instead of gas or dinner. We are the lucky ones, I know, but diabetes is always there, in the back of our minds and affects so much of what we do or don't do. I am healthy, but I am also diabetic. I have insurance. I have a father who supports my diabetes care. I have some doctors. I have insulin and glucometers and a few boxes of test strips in reserve. I have resources. I am lucky and still, it's really hard. Still, I want an insulin pump. I want a CGMS. I want a better doctor. I want a lower A1C. I want to lose some weight. I want people to understand. I want type 1 diabetes to be recognized and distinguished from type 2.And most of all, I want a cure. Yes, I want a lot of things, some of which I need to give to myself and others I am dependent on outside forces to deliver. And still, I know I am lucky. I am blessed in many ways, and there are people far worse off than I, but that doesn't make my reality any less difficult or frustrating at times, nor does it make living with diabetes any easier. It's a complicated disease. Even with the best resources it's hard to manage and it takes a toll. Often times I feel like I fail more than I succeed with this disease. Our lives are full and happy and normal in many ways as diabetics, but it's still there, and it is still hard. Every day.

So, my diabetes 365 project photo for today is of the number 246, for the approximately 246 million people worldwide living with diabetes. Countless others are affected by the disease, our loved ones, parents, families, friends, colleagues, exes, children, neighbors. We owe them a debt of gratitude, for sure. I don't know what it's like to have a friend or spouse or child with diabetes. I only know my own experience as a diabetic and a sister of a diabetic, but I know it can't be easy. Many, many people are touched by diabetes. 246 million is a number I don't like, but one that demands attention. And today, I'm glad it's finally getting some.

P.S. I will post photos of Taipei 101 lit up in blue later this evening, I promise! I hope I can get some good shots. Stay tuned.