aiming for grace

feeling different.

I feel different from other people. Partly of course, because I'm a separate individual. But partly too because of my diabetes. After 20 years of having it, I think that what used to be a small difference now feels like a much bigger one. When I first got diagnosed, I still felt like a non-chronically ill person who now had to do a bunch of new, strange stuff that I didn't have to do before. I definitely felt different once diagnosed, but still not so different from others, because I still kind of felt more like them than me "as a diabetic". But now what started out as 1 degree of separation has become a wider gap, simply because of all the time that has passed. I'm still me, but I'm the diabetic me now. Not just the diabetic me, but never not her either. Every meal, every event, every party, every trip, I am reminded of how different I actually am from everyone else around me. It's like there was a fork in the road 20 years ago and where in the beginning, I could still see the other path from where I was, now it's very hard to make it out at all. Where I walk now, I have to keep my eyes in front of me to avoid tripping and falling over stuff that my friends and other people just never have to consider. Which in the end, adds up to me feeling very different from almost everyone I know.

if not now?

I read amy's post, living with it a few days ago, and I have thought of it often ever since. I'm so grateful for the web and the OC and the dedicated, open people, whose generosity of spirit has reminded me that I'm not alone in this journey with diabetes. amy's recent post articulated a particular, specific moment, that I have experienced numerously over the past 20+ years with diabetes. One that is so real and frankly, so important in reminding that I am still a person first. A person who is still capable of feeling shock and despair about having diabetes. Yes, I'm also a diabetic. Yes, I'm used to it. Yes, I live with it and make the best of it. But yes, I also can't believe it in my soul, that I still have it and will so forever, unless there is a cure. That momentary breathlessness, like I've been kicked in the stomach and had the wind knocked out of me, still happens. And thanks to amy's post, I know that it happens to others too. Yet again, I feel a little less alone and for that I'm so grateful.

So we still have diabetes. What has been coming up for me more and more lately, is that fact, has to matter for something. It has to count. Meaning that it has to count in positive choices I make in my life, because it certainly counts for so many accomodations and difficult choices I have to make. I know too that some of this thinking is also fueled by the fact that I'm smack dab in the middle of my life (she said optimistically) and it's what you naturally think about at this time. What's the rest of my life going to be about? What matters most to me? What matters most? And what keeps coming up for me is the phrase: if not now, then when? If now isn't the time to actively move towards the things that have meaning to me, then when exactly will it be? Later? When there's a cure? More and more, I realize that what I've earned, is letting all that I've struggled with around diabetes count for something. I have permission for different choices because of it. A more authentic living of my life. If not now, then when? The more I let my diabetes count for something, the more I find myself saying, well, yes, now would be a good time. A good time to get a studio to do my art in. A good time to learn horseback riding. A good time to put those new windows in so I can see the garden better from inside, on those many rainy northwest days. Letting it count means letting it count for now. Letting the when become now.

a rollercoaster without the love.

I came of age in the 70's and one of my favorite songs from then is love rollercoaster from the ohio players. So groovy, so fun. Well I've been on the diabetes rollercoaster this last week and it's been anything but fun. Heavy duty swings. Some I don't get but when I look at the picture of the week as a whole, I have to say that it's primarily a result of distraction on my part. Things have been going so well for so long, that I have actually sort of forgotten that I'm diabetic. Well, not forgotten but softened the focus a bit. A few less blood tests here, a few more assumptions about what I need to do without really thinking about it there. I've been a bit reckless and cavalier, truth be told. And I'm paying for it big time. It's added up to this unpleasant rollercoaster ride and it's clearly time to get off. So it's back to more testing, and more attentive carb counting, and prison food. Nothing big. Just back to vigilance and focus, because as this week so poigniantly reminded me, I'm most definitely a diabetic. And as such, I've got a job to do. There are no vacations or luxuries of distraction with diabetes missy! Well at least there aren't any that last for very long...

more exercise adventure.

Exercise. I love how I feel after it. I don't love what it does to my blood sugars. I'm trying to do this trainer thing. As well as pace myself in the process. But oh the rollercoaster joy on the day of my workout. Yesterday I tested before. 110. Good, but also a near guarentee that I'll go low during the workout. So I brought a granola bar to eat during, which I did. We kept the pace reasonable, or so I thought but yes, even with the luna bar during, I went low after. An icky low, so I suspended and ate some fruity snacks. By dinner, really high. Hello rebound. Corrected. Bedtime, 75. A snack. And surprisingly, an uninterrupted night. But still, what a day. Hm. Exercise. I love how I feel afterward, but I certainly haven't got it figured out yet. I'm trying to stay strong and resist exasperation which leads to abandonment of the idea. Strong in body. Strong in resolve. For now, let the experiment continue...

getting a little noisier.

It's been an exciting week for design and diabetes, thanks to fabulous amy. And particularly exciting for me who, as you all know, is happy to dither on for days about how design matters!

I came across something that adds some interesting fuel to what's been discussed these past few days. I was reading one of my favorite blogs, written by grant mccracken, a social anthropologist who often talks about product design and consumer behavior. In the beginning of this particular post, he talks about an idea posed by tibor scitovsky: that the pleasure of ownership turns to mere comfort over time. The post I'd written a few days ago, pump 2.0, suddenly came to mind as I was reading this. He's talking about the same idea really, only applied to a condo or cell phone instead of an insulin pump. All of these things are "consumer products". One just happens to be life-saving "consumer product" that people with diabetes can choose to wear as an alternative to shots. What I found most interesting was that this economic theory gets to the heart of what joel goldsmith spoke to in the diabetes mine interview, a few days ago. He said, "what's funny is that these companies tend to think that people with diabetes are somehow not the same people as those buying iPods and Nintendos and Razor phones." Exactly. We're people and consumers and diabetics. Not exclusively one or the other. And as such, the "products" we use in managing our diabetes, are subject to the same phenomenons, expectations and desires as any other "product" we bring into our lives. It's just in the case of our pumps, the stakes and expectations are a lot higher. They have to work in the engineering sense. And they do, which is undeniably fabulous. But over time and 24/7 interaction, their clunky, brick-like nature becomes more obvious to us every day, making the miraculous, engineering feat they represent, fade a little bit. Intellectually we know our pumps are amazing, but time, our personal interactions and experiences with them, their design limitations and our natural human tendency to loose the satisfaction from the improvements of new "products" (if you are to believe McCracken and Scitovsky at all), all add up to yearning for something so much better.

Anyway, all in all, it's been a great week for design and diabetes. Lot's to think about. Lot's to keep talking about. Lot's of insight to share. Lot's of opportunity for the industry to listen because if last week is any indication, this "consumer base" is getting a little more articulate, demanding and noisy.

another year.

4.10.86. 21 years with diabetes. Good news, no complications. Bad news, no cure.

asking for a little design help.

Amy at diabetes mine is my hero today. She wrote a great post about pump design. She asked for help from one of the foremost leaders in contemporary product design. And why not? Don't we deserve the best? Her post got picked up by tech crunch which means that a ton more people are going to be thinking about design and the pump. She got a robust and rich discussion going about the fact that design matters. And voice matters. She imagined a better life and then did something about it. And that matters, most of all.

Yes, Amy is most definitely my hero today!

symbolism.

I'm big on symbols. They're borderless. They transcend language, country, and time. As such, I love the red cross symbol. For me it means health, safety, connectedness. It's modern and timeless. And since I live with diabetes, it's come to mean a little bit more for me. I guess I identify with the good parts of the red cross. The healthy, safe parts. They symbolize what I'm trying to be with diabetes. Healthy and whole in spite of it and safe for the future by staying in good control. Which makes me think that the red cross also stands for hope. Hope for health and safety and a better future.

1,000 apologies to the person who took this picture on flickr. I've lost the link so I can't give proper credit. Sorry!

looking for grace.

Aiming for grace is the name of this blog, because that's what I'm trying to do with my diabetes. Be graceful about it. Deal with it as gracefully as I possibly can. Because it is here, in my life, for the duration, barring a breakthrough or a miracle. I try to be graceful about that fact. Or the fact that sometimes people close to me don't understand how it affects my spirit or reserves or emotions. Or the fact that billions of dollars are being spent on a war I've never agreed with, instead of research to cure this disease. Or the fact that sometimes, because of my diabetes, it's fluctuations, it's demands, I feel very tired. Tired to my soul. It's at these times that I really have to try to keep my eye on the idea of grace. It's at times like these that I aim for grace.