aiming for grace

eat the rainbow.

I was one of those kids that hated vegetables and fruits. Unfortunately, I remain that same type of person as an adult, though I know better than to avoid them in my diet. I try to eat the few types of fruits and vegetables I actually like as much as possible. My nutritionist says I'm ok with the types I like, as long as I eat them more often. So I am and it's getting easier to do so, though I doubt fruits and vegetables will ever be tops of my favorites list any time soon.

Nutrition is so very complicated as a science and as a diabetic, there's so much to consider when thinking about food. So much of the time eating becomes a chore or source of fuel or connection to bloodsugars and not a source of pleasure or sustenance. So I like it when nutrition is presented in a simple, straightforward way, which helps make it easier to do the right thing when it comes to what I eat. Which is why I'm loving the nature matching system by tattfoo, a project that frames up nutrition as color, "as a reminder to consume your daily recommended doses of color. The shades of color displayed at farmers’ markets are more than skin deep, reflecting the inner potential of every fruit and vegetable; intense colors might even be called nature’s nutrition labels. They get many of their colors from phytonutrients, compounds that play key roles in health and reduce the risk of heart disease and cancer. The more colors come together at a meal, the better. Sadly, marketers of junk food apply the same technique used by nature to pollinate seed to their nutrition-deprived product. Color is a device that can do good or be deceptive and ensure the pollination of unhealthy eating habits. The colors on the placemat shown below are all actual food colors, taken from photographs of various fruits and vegetables. Match your meal to the placemat—it is truly a rainbow connection."

What a smart, simple way to think about food. I love it, plus it sounds so much more fun and doable than the usual "eat better or you'll be in trouble" feel of most of the talk we hear in this culture around nutrition. Add more colors to your meals! Eat the rainbow! I actually want do that!

aiming for grace: 20 things I know about diabetes.

I owe Amy a big thank you for her kind review of my new little book aiming for grace: 20 things I know about diabetes. To be honest, I'm feeling a bit funny about even talking about it. More than anything, making this series of posts into a self published book has been a terrific exercise, a healing process, to be honest. The fact that there's a book that people can have if they'd like, is a very nice result of a personal exercise that's been helpful and positive to me as an individual. Making something from nothing has always really helped me for some reason. A piece of art, a story, a blog post, a book. Taking an idea or feeling from inside and pushing it outward into a real form that I can see and feel has always made sense to me. It's always made hard things less difficult to deal with.

That was the core idea behind the aiming for grace exercise I did a couple of years ago to commemorate my 20th anniversary of living with diabetes. It was so very helpful, 20 posts over a 2 week period. Surprises and revelations that I hadn't expected, confirmation and celebration of what I'd learned so far. It helped so much to see the ideas rather than just think them. Doing the exercise did exactly what I had hoped it would by creating a milestone and documentation of all that I knew so far. It honored my journey for myself.

After doing the exercise on my blog, I decided to make 10 one-off copies and have them bound in a book format to give to my family and friends and doctors, to acknowledge their help in my journey and to thank them for their support. There was something so amazing about take the idea further, from inside my head, onto the blog with it's virtual format I could see, to a book format I could touch and feel. The process somehow made the ideas feel more real to me and just as importantly, it gave the people who received the book a chance to interact with the ideas in a more intimate and personal way. I don't know what it is about books, but there's something about the weight and feel of a story in your hands, physically revealed with each turn of the page, each picture and phrase. Everyone, to the person, commented on how they had learned something more about diabetes because of the book, a result quite frankly I hadn't expected. These were people who knew the disease well or at the very least, knew me well, and yet because of the format, were able to interact and understand diabetes at a different level. Who knew?

Since I went through the exercise of making the one off books, some amazing technology has come to be. In the last couple of years the ability to self publish has become possible in unprecedented and relatively affordable ways. Thanks to services like Blurb, iPhoto book, and Lulu to name a few, it's fairly easy now to publish one's own content in a beautiful, professional way. Each company has a interface that makes it possible to drop your content into their format and then for a price, based on size, number of pages, and whether it's hard or soft cover, they will produce the book for you. Simple as that.

So what's happened is that the insight from my experience with making the aiming for grace exercise into a book has combined with this happy new technology of self publishing and voila, my little book was born. I kept thinking about how people internalized the ideas differently in a book format and I thought that other people might like to have the choice to see the story that way too. All the original content still lives on the site and can be read anytime here. What's fun is that now if someone wants to have it in a swell book format, they can have it that way too.

can limits be possibilities?

I went to the portland art museum yesterday to see the chuck close prints: process and collaboration exhibition. Chuck Close is one of my favorite contemporary artists because of his amazing study of color as well as his exploration of the wide range of materials and production methods he uses to make his art. The exhibit features many of his prints and paintings but what was most exceptional was the fact that the various process' he uses to make his art were shown along side the finished work. Etching plates, carved wood panels, and a series of screen prints shown in stages, with each progressive screen adding yet another color, revealing how the final idea emerged over time. This exhibit highlighted Mr. Closes technical mastery, his meticulous attention to detail and unrelenting dedication to a complex process of making. I thought I knew and loved his work before, but after seeing this show, I walked away with a greater understanding and appreciation for his art. What an absolute treat!

I walked away with an appreciation for this man's art unto itself, moved by it's beauty and technical achievement. But I also walked away with a few thoughts that might apply to my life with diabetes. The fact that this amazing work is done by a person who is a paraplegic with limited use of his arms is also remarkable. To say that Mr. Close suffered an enormous set back in life, one which imposed profound physical limitations on him, is a colossal understatement to say the least. I have a hard time imagining what it must have been like. I have a hard time imagining what it took to move forward to paint again. But the fact that I can't personally imagine what it was like or what it took to start again, and the fact that my physical situation is completely different from Mr. Closes, doesn't diminish the lessons his story offers to me. It's not about comparing the level of challenge each person faces but rather, respecting and learning from the way each person approaches their journey and then applying the lessons that make sense to your own. For me, Mr. Closes particular story resonates deeply. The way that he made his art had to change to address his new physical state and as such, his art changed too. Limitations were accommodated and his art continued to be created. He made what was dealt him work, regardless.

Now I'm not going to go to that place about what a "blessing" limitations are. And I'm also not going to talk about how there are no limitations, just lack of will. Everyone has their own response to the physical limitations imposed by disease, disability or accidents. Sometimes getting up in the morning is the most courageous act a person can muster that day and sometimes that's as important to celebrate as any other type of accomplishment as far as I'm concerned. No, what I'm taking away from Mr. Closes story is more of an idea about possibility. I'm taking away the idea that maybe limits can be possibilities too. Given the choice, I'd hand in the limits of diabetes first chance I could get. But in light of the fact that there isn't a choice, I'm left with the question: what are the possibilities here? What can I learn from other peoples journey's with physical limitations and what lessons can I apply to my own?

When I step back from Mr. Closes story, I take away two key lessons. One idea is kind of romantic, the other is practical, but both are very important.

The first lesson I learned was about passion. When I look at Chuck Close's art, I see an enormous curiosity and ability for obsessive focus. There is a deep interest and passion around making and understanding and finding a kind of perfection, on his terms, for himself first. When you see the 100+ screens for a screen print series, you know that there's a journey towards something perfect and complete going on here. A narrow subject range and idea is explored over and over again, with different mediums, through different lenses. Passion, curiosity and deep focus, all feel to me like they're important sources of energy for this incredibly rich, alive and profoundly beautiful body of work.

The second lesson I learned was about collaboration and outsourcing. Less sexy than passion but just as important. Mr. Close's situation, and the art form of printmaking, requires the help and expertise of others to execute his artistic vision. The write up that accompanied the piece called Emma, spoke repeatedly about the trust he had to give to the master printer who was producing it. That it was hard for Mr. Close to let go of the control of the making of the piece. But in the end, Emma is magnificent, due in great part to that very collaboration and dialogue between the artist and the craftsperson. The actual making was outsourced, but the idea, the genius, the artistic story was Mr. Closes, made better through collaboration and trust. To bring that story to life, he had to let others help him do it. And magic and beauty was the result of that process.

So at the end of the day, I saw some wonderful art yesterday. The questions and lessons that came from yesterday however, will be carried with me for far longer. Questions like, what are the possibilities that lie within the physical limits that diabetes can present? What is the passion in my life that transcends diabetes and all the struggles it can carry? What do I need to do to accommodate the limits I feel? What things can be outsourced and who can I collaborate with to bring to life the things I am trying to build and experience in my life in spite of diabetes? And most importantly of all, what new thing can be brought into the world because of the limits I experience?

What are the possibilities?

Image via don relyea's blog.

another way.

My friend who got diabetes last year is now on the insulin pump. She's so cool. She's an inspiration to me in many ways, especially in her grace in dealing with all the changes that diabetes has brought to her life. I can't say enough about her because she's just so cool.

Like how she wears her pump. Out in the open, clipped to her jeans back pocket, there for the world to see. Not like me who discreetly clips it to my waistband, conscious of every time my sweater rides up and reveals my clunky, not so pretty friend. Conscious and constantly tugging to cover it up and keep it as much out of view as possible. It's not that I'm ashamed of the pump but rather that I just don't want to lead with it. "Hi there, I have a pump, oh by the way, did you know I was diabetic", you know, that kind of thing. Or that's at least what I used to think until my cool friend came along and showed me another way. Every time I see her, totally styled out and as groovy as she's always been, moving through her day gracefully with her square chunk of a pump clamped nonchalantly to her back pocket or sweater, I find myself needing to stop and catch my breath. I'm totally floored, flabbergasted, flummoxed. Not by her. By me. Why have I been so nervous about showing my pump I ask myself? Why have I worried so much about someone seeing it? When I see my friend I'm struck with the question, what does it matter? She's so cool and sassy and stylish with her pump that I realize it's really ok to show it. In fact, it's totally ok.

What this has taught me is that it helps a lot to be actually be around other people who have diabetes once in a while. It's a good thing to actually see other healthy ways of dealing with this disease. It's fine to choose my own way, but being exposed to other options along the way, makes the choosing that much more informed and personal. I'm so completely grateful and lucky to have the chance to do this now with one person, one friend.

And who knows, maybe one day I'll feel less self conscious about showing my pump and just clip that puppy to my jeans pocket on the way out the door. Or maybe not, but at least now I know I have that option, thanks to my friend.

what's in a number?

What is it with numbers? Why do I feel so bad about certain numbers and good about others? Why do I compare mine to other peoples? And why do people feel so compelled to share theirs, unsolicited but worked into the conversation nonetheless? Why do we care about numbers so much? I know we're trained to notice numbers, and to track them, and to understand their meaning. I've been trained to use numbers as guides and tools in my health care. I've been trained to shoot for certain numbers and to react to certain numbers and to notice the patterns of the numbers, to change my behavior, my choices, my life in relation to numbers. But no one has ever come out and said I should feel anything beyond the information they provide. Even so, I realized recently how much more meaning I attach to my numbers beyond the information they are designed to provide. I realize that I attach a judgement of my character to my blood sugar and A1C numbers, like some kind of cosmic grade about whether I am a good person or not.

Huh?

Wow.

Where is that coming from? Certainly not from my doctor or my husband or my friends or the OC. So if not from them, then from where? And more importantly, why? No one says I should feel the way I sometimes feel about numbers. In fact, they often say I shouldn't. There is no good reason to attach this extra meaning to a 6 or a 7 or a 5 but even so, I do it anyway sometimes.

Wow. Now that's really good information. To actually see that I'm doing that. To see it clearly. Because now that I see it, I can work on it. I can work on noticing and using the numbers as information and guides. And that's all. I can notice when 1) I see a number, and then 2) I feel like a failure or a bad person. I can work at stopping at 1) and not going to 2). Because the fact is that 2) is not true and to feel so, even unconsciously, doesn't help in any way (and in fact, makes it worse than it needs to be). So here's to a new equation. One where numbers are just numbers. Neutral, a source of information and positive motivation and inspiration, a guidepost and just a moment in time, and that's all. And that's all. Ah, now that's a noble goal!

totally off my game.

We're in the middle of some remodeling and it's totally got me off my game. I'm not a particularly neat person, but I am definitely a home body, so having my haven of calm disrupted by torn up walls, sheet rock, sheet rock dust, torn up floors, rooms full of displaced furniture from the rooms being remodeled, all adds up to a major rattling of my cage. Which is normal I guess but as with most normal things, diabetes adds another fun filled layer that can shift an experience from annoying to physically challenging and even dangerous. Case in point. Over the last 3 days I've made mistakes that I've literally never made before now. And not just one. Many, all in a row. What's going on here? I've forgotten to take my dinner insulin dose resulting in a 350 b/s at bedtime, resulting in another 340 b/s in the middle of the night and then a crash in the early morning because I over judged how much insulin I needed. Hi zombie woman the next day. Then last night I forgot to reattach my pump after a bath, discovering the mistake at bedtime, an error that would have meant a high b/s under normal circumstances but for some reason in this case, I was 56 so it didn't actually matter so much except for the freak out factor of realizing I'd forgotten to reattach the pump in the first place. Excuse me? Then this morning, it was time to change out the site, a fact that I had noted last night, this morning before my shower, and again after my shower as I was getting dressed. Normally I'd change out the site before I left for work, which I planned to do as usual today. Right. I got to work, picked up some breakfast, went to bolus and remembered that yes, I needed to change out my pump this morning but hadn't. Luckily, I had enough insulin left to cover the meal so I bolused, called my lovely husband and asked him to drop by some fresh insulin on his way to work because the vial I had with me was ancient. In the past I have never, I mean never, been in this position before, so frankly I'd forgot to change out the vial in the last year. Wow. I'm most definitely off my attention game here. Which makes me realize how much I'm usually on it (and for what it's worth, how much I hate remodeling). But ultimately, it really reminds me of how much I need to pay attention at times when my routine is out of sync. Because, though the situation at hand is most definitely annoying, given the right circumstances, diabetes can make it become a lot worse. After all, there's no negotiating with diabetes here. If you mess up, you mess up and pay the consequences. Period. Boy I hope the new floors, pretty picture window and big open, sunny room will be worth it. I'm sure it will be, if I don't land myself in the hospital or something stupid like that before it's done! Yikes.

a goal for life with diabetes.

I've been thinking lately, that one of my goals in life with diabetes is to balance the necessity of preparedness with the pursuit of some fun.

Top photo from reference library, bottom photo found long ago but the actual source unfortunately, is long lost (sorry).

designing better than good enough.

Ok, so I know I've complained alot about the state of design in the medical industry in general and in the world of diabetes in particular. I'm a designer by training and the idea that life can be made better through design problem solving is fundamental to my approach to the world. I believe that great design can improve quality of life, pure and simple. There are countless examples of this in the world, too many to list here. I take it for granted that if something is just "good enough" it's ripe for reinvention or redesign. It's just the way I think about things.

The reality that the stuff I have to use as a diabetic could be better designed has been a source of real frustration and sadness to me. The pump design is ok, but oh, it could be so much better. The other reality is the ability to actually change the design of the pump is slim to none. I'm involved in a couple of things where I can possibly contribute some input, but to actually be able to profoundly change such a highly regulated, complex medical devise is unlikely. For all intents and purposes at this point, I get what I'm given by the industry. Period. That fact also saddens me. It makes me feel caught and captive and passive. I don't like that feeling because it adds another negative to my experience of diabetes. I've come to believe that I can't do what is fundamental to who I am (ie. problem solve through design), which leaves me feeling ineffectual in such an important part of my life.

Well, it's occured to me lately that just because I feel this way about the pump, that doesn't mean I have to feel that way about everything I need to do with diabetes. Take medical alert bracelets for example. I'm supposed to wear one, but I don't because they are uncomfortable and antiquated and just plain ugly. I've not worn one most of the 21 years I've had diabetes, which means I've been lucky not to have had cause to need one, but also means I've been taking a risk. I'm a bit of a girl scout and so to not do something I'm "supposed" to is kind of a big deal for me. I've let the aesthetics of the existing state of medical alert bracelets (necklaces too) and the fact that they're just "good enough" get in the way of being as safe as possible. I'm not beating myself up for that fact but I do recognize it. I recognize it and realize that to some degree, this has always nagged at the back of my mind.

So a few months back, I decided to do something in my life around diabetes and design. I connected with a long-time friend about coming up with a new approach to medical alert bracelets. Beyond being one of my oldest and dearest friends, she has an impressive background in production and manufacturing and is also an accomplished designer in her own right. We talked and explored and noodled the possibilities around design and manufacturing. We researched and learned and talked some more. We sketched and mocked up and played with prototypes. We've been having some real fun and soon will have something to show for all our effort. But whatever the result, the good news is that I feel so much better because of this process. I feel better thanks to my great friend and her belief and dedication to this exercise. I feel better too, because I have remembered that I have power here and that design is about all kinds of problems, big and small. Even though I can't redesign the pump to my perfect liking, I can still design something that makes my life better and safer with diabetes. At the end of the day, this exercise has reminded me that first and foremost, I'm a person with diabetes, a designer with diabetes, not a diabetic without power. And that reminder is worth it's weight in gold (or surgical steel or titanium or silver)!

"sites in legs" update.

Update, in the spirit of noticing the good stuff too. I know I've complained about sites in my legs a number of times in the past. Well I'm here to tell you that I hate them less now that it's summer and I'm wearing skirts and loose fitting shorts. I'm officially modifying my dislike for them in general, to mostly disliking sites in my legs when I wear jeans or tighter fitting pants. Warmer weather, girly skirts, casual shorts, sites in legs are ok. FYI.

celebrating a bit more freedom.

Yesterday was the 4th of July, a day we celebrate freedom and independence. I think those are good qualities to value and notice and celebrate.

Well I had a small, silly thing related to diabetes happen yesterday that reminded me of those ideas. Last week I upgraded my pump to the mini med 522. I wanted to have the ability to use the real time glucose monitoring system when I needed it. I'm not taking the full leap yet but I like having the option to do so whenever I decide I want to. My other pump was also out of warranty, scratched up and ready to be replaced anyway. So last week when the new pump finally arrived (after much jumping through hoops with insurance companies) I went to the clinic and converted over to the new pump. Once I was finished, I gathered up all the accompanying booklets and instructional dvd's and the old pump, put them in the box the new one had come in and headed home. Done and done.

Yesterday I was in my office at home, blogging away, and I noticed that my pump started to beep intermittedly. Randomly. When I checked it the pump screen, there were no warnings that I was running low on insulin or battery power. Hm. And hour or so later, it beeped again. What the? Again, no information on the screen. Was I sitting against it wrong? Was this new pump more sensitive to pressure than my old one? Hm again. I decided I'd wait to see if it did it again, and if it did, I'd call the hotline. Hours passed, I'm getting on with the day. I pop into the office for a second, and there it is again. My pump starts beeping. Ok, I just don't get this. So I call the hotline. I get a very nice woman on the other end, I tell her my tale of puzzlement. And without missing a beat she pleasantly asks, "is your old pump in your office?" She doesn't even have to finish the question before I realize that yes, the box I'd brought home from the clinic was sitting next to my computer. "You're brilliant!", I say, feeling like a total dork for having wasted her time. She laughed and said, "ah, I wish I could take credit for brilliance, but you can't imagine how many times we get calls like this!" Ok, I feel a little less like a total dork. We laugh, I wish her a happy 4th and off I go. Funny times...beeping, puzzling, silly times.

In the aftermath of this silliness, I can't help but feel grateful for the fact that someone was on the other end of the phone, on a national holiday, working the beat. There was someone there to deal with my silly problem, but I also I know that if it'd been a serious one, they'd have been there too. And that knowledge gives me a little more freedom in living my life, a perfect revelation wouldn't you say, given the theme of yesterday's celebration?