Wednesday, September 01, 2010

D-Layed D-Art Day

When I heard about Diabetes Art Day, I wasn't sure I would even TRY to participate (or if I wanted to). For one thing, the community has already done several themed days and I wasn't sure I wanted to participate in yet another one. Plus, to be truthful, my days of artistic creativity seem to have gone into remission, quite unlike this s#!tty disease (which didn't even give me a honeymood period when I could temporarily stop using insulin for a brief window of time after diagnosis). It's not that I don't enjoy creating things, in fact when I was a kid, I really loved it. But these days, it's something I seldom do except maybe in the kitchen when I cook, which happens occasionally -- when time permits. I find my most creative work is writing.

That said, Lee Ann suggested the idea, I wasn't sure if I could really contribute much. But one of the comments on her blog posting suggested that kids could visit for some possibilities, which featured some creations by children and adults made from diabetes bits and pieces (or medical waste as it really deserves to be called!). The idea of children with diabetes expressing themselves in this manner was compelling (to me, at least). But what could I as a middle-aged person with juvenile diabetes who's had 34 years of living with this disease shape my perspective really add to the conversation?

Then, the idea hit me. When I was diagnosed at age 7 in 1976 (you do the math to figure out how old that makes me), my parents had been through the whole diabetes thing before with my older sister about 3 or 4 years earlier. They knew before I even had a formal diagnosis. In those days, kids were admitted to the hospital and they stayed for a week or even longer while doctors tinkered around with different insulins, ratios, scales, etc. By comparison, today, the kids might get an overnight stay of they're lucky, but managed care being what it is, tends to push them out of the hospital as soon as humanly and financially possible -- ready or not.

Prior to my diagnosis, I'd spent a month or so in the Tacoma, Washington area at my uncle (on my mother's side of the family) and aunt's house along with my maternal grandmother. It was 1976, the year of the bi-centennial, and was a very exciting for me at the time -- my first trip on an airplane and flying across the continent (I grew up in Connecticut, and Washington is on the other side of the country AND continent). Needless to say, my grandmother, aunt, uncle, cousin and I had amassed a collection of miscellaneous trinkets, memoirs, photos, etc. from my big trip. Mostly it was trashy stuff like airline baggage tags and the like, but I had a bag of that stuff. My mother, in her infinite wisdom, thought it might be a good idea to keep me busy while I was in the hospital to create a scrap book chronicling my recent adventure. At the very least, it was a good way to kill some of the many hours I might have spent watching the same syndicated "Brady Kids" (see here or here) cartoon reruns on TV that I would have endured otherwise. I watched those too, but the limited number meant that I had memorized them during my hospital stay.

Then, the idea hit me: I could try and use some of the work I had created as a 7-year old who had JUST been diagnosed with type 1 diabetes. Aside from a walk down memory lane for, my biggest challenge would be to dig up the scrapbook I created back then. My only challenge is that the book is now in a storage facility and their evening hours are only on Thursday evenings, so I don't have anything to share with you today. :(

Let me just not that this whole thing was created using the kind of stuff you might find in a typical first-grade classroom: construction paper, a shoelace to bind the book, magic markers, 7 year-old penmanship, etc. But I think it goes a long way towards expressing how I was dealing with things including the diabetes diagnosis at that time. I also remember hearing how "close" researchers were to a cure, and this came from the nurses at the hopsital -- not my parents who knew better. To anyone who has a child who's diagnosed: don't lie to kids; they aren't stupid and you are setting them up for enormous disappointment when it never happens. While I remain hopeful, I'm not naive. As my friend, author Deb Butterfield once eloquently wrote:

"Diabetes is big business with powerful economic, social and political forces opening and closing doors to our treatments and cures. Billions of dollars are made from selling products to the diabetic community. Developing a cure costs money, and until there is a cure, there is no product to market. There is nothing to sell. At the large diabetes conferences, healthcare professionals are inundated with information about more accurate and simpler blood glucose monitors and insulin delivery systems, but the advocates for curing diabetes, and scientific advances to that end are woefully underrepresented.

Unfortunately, without the attention-grabbing gimmicks of the companies selling diabetes management products, the message about curing diabetes gets lost and healthcare workers return home, telling their diabetic patients only about all the new technology that can help them manage their condition."

Anyway, while I was far less of a cynic in those days, so my "art" is probably less dark than it would be today, as my personality did not develop in a time-warp or vacuum. So I am postponing my Diabetes Art Day Post until later, when I have a chance to retrieve my good old scrap book made in the hospital. That will be my contribution. Stay tuned for my delayed D-Art post!

5 comments:

Michael Hoskins said...

Better late (or D-Layed) than never! Can't wait to see it, Scott!

George said...

I'm looking forward to seeing it!

Val said...

Yup, I'll be waiting for whenever you have the time to post it.

Lee Ann Thill said...

Regardless of when you get it posted, I'm very much looking forward to seeing this scrapbook. I live vicariously through the work of children, whether the artist is still a child or not, because I love its honesty and genuineness, and my mom didn't keep my art. I love her, but she hasn't got a sentimental fiber in her, so I can only wonder what my own art conveyed as I was growing up with diabetes. Since I don't have that, I like to see how diabetes reveals itself in others' work... which has much to do with why I do what I do, I'm sure. So I'm intrigued to see what newly diagnosed 1976 Scott created in the wake of his diagnosis, I anxiously await its internet unveiling, and appreciate your intent to share it.

Scott K. Johnson said...

I too will enjoy seeing your scrapbook.

I loved Deb's book, and hope to be able to meet her and thank her some day. I think it's really cool that you're friends with her. :-)