aiming for grace

understanding the story from the inside out.

I found this video of jill bolte taylor absolutely amazing and inspiring. It's a pitch perfect example of a person describing a physical trauma (in this case a stroke) from the inside out. Dr. Taylor also happens to be a neuroanatomist, so she's in a unique position to share her experience with an added level of technical insight and context. But it's her unbelievably humane and moving presentation of the story itself that really brought me to tears. I was spellbound and yet surprisingly comforted too.

One small warning for the squeamish. There's a short portion of the presentation where she handles an actual brain. It's a little creepy but it doesn't last for long.

Artwork by fred tomaselli.

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.

hope.

It's been a bit of a rough week on the old diabetes front. Less about the inevitable, unending physical aspects of it, and more of a struggle of the spirit. I've felt heavy hearted, and more aware of some of the bigger trade offs I've made because of this disease. Trade offs that I'd make again, because they make sense in the big picture. They've helped overall, but regardless, they've also come with a price. They represent a loss of some of what life has to offer. 95% of the time I'm ok with the trade offs, I remember why I made them and I know they were for the best. But once in a while, I'm reminded of their cost and it's at those times that I feel sad and burdened. Last week was one of those times. Today is too. I know that this feeling will pass, as it has so many times before. I know there is hope. Just like the spring bulb in this lovely photograph from holly. It reminds me that there is hope. For better days and a lighter heart. I know that this too shall pass.

A little bit more visibility.

Visibility is an important thing. It highlights similarities and differences. It introduces us to diverse cultural experiences within our society and it reflects our own cultural experiences back out to the larger society. It's through visibility that we see the small stories of people's lives and the big stories that come from the patterns revealed through the small ones. Visibility can also shine the light on struggle, suffering and injustice. It can reveal what has been invisible before. Yes, visibility if very important indeed.

I remember when I was studying the history of civil rights in this country and the discussion around of the absence of people of color in media. The argument went that if people of color weren't shown and they didn't see themselves in mass media, television, film, as actors or broadcasters or commentators, they and their experiences were in a very real sense, invisible to society. I agree with this idea. Being a part of media, the collective experience of information and entertainment, heck, just seeing a person who looks like you or is dealing with what you're dealing with, out there, in the world that everyone else can see and be exposed to, is so important to feeling and being a part of a larger society and culture. It means that you are not invisible. It means that you are included in the big "we". It means that you aren't marginalized or diminished or forgotten. It means that you belong.

Before I started writing this blog, I felt all of those things. Invisible, outside, less than. I literally had no one who I knew or saw, who was experiencing anything like I was with diabetes. And then I was introduced to the world of blogging and suddenly, I wasn't so alone and I wasn't so invisible. There was this amazing period of revelation, of seeing myself and my experience with diabetes, in others. Out there. Beyond myself, mirroring my reality and in the process, validating it in ways I'd never experienced before. I slowly became more present and whole because of the people I saw outside myself and more importantly, because of the support and recognition they showed me. It was transformational. It was profound.

Recently I've had another experience around the idea of visibility and confirmation. The other day, I stumbled across DLife on CNBC as I was setting up my new DVR system. Diabetes on mainstream TV. Validation on a national level. Visibility to the larger culture. Hm. I'd heard about the show before but I'd never really pursued finding out about it until then. I decided to record one episode to check it out, because I'm a total snob when it comes to stuff I'll watch and if it isn't well designed and produced, I'm just not going to watch it, even it is about diabetes. Well, suffice it to say that I am hooked. The show is so well put together, informative and interesting. It's all that and then some. A great example of how they're approaching diabetes media differently, was a recent shows fresh approach the subject of nutrition. To my surprise, here was a discussion about nutrition through the filter of organic food and eating locally as a way to get more healthful attributes in your diet. By bringing a fresh and informative take on a normally tired and lecture filled subject, the important points were reiterated with new helpful ideas being added to the discussion at the same time. It was just fabulous!

What I really like about this show, is that I'm respected enough as a viewer to have well designed, intelligent, insightful content created for me as a whole person who happens to have diabetes. I'm seen as an smart audience member, a client to be served, an adult to be considered. Not a patient. Not a child. And most importantly not an invisible entity. What this show has done for me, is reflected my reality back to me on a new and larger scale. It's shown me that others see that I exist and it's broadcast my existence as a person with diabetes to the larger culture. It's given my diabetes experience the respect and honor of creating content for me that is helpful, insightful and authentic. What an amazing validation. What a difference that has made. So huge thanks to DLife and all their staff, for putting together such a great show for us all to experience and for removing yet another important layer that obscures visibility of this disease.

And speaking of a bit more visibility, I have to also thank typepad for featuring aiming for grace as their year end blog link. Their kind words and willingness to highlight one journey with diabetes, helps provide a little bit more visibility around diabetes in general. I am very grateful to them for that.

And another thank you to the dynamist for their kind link to design matters category on aiming for grace this last Monday. Sometimes I think that my rantings about medical design are like screaming into the wind. It's so wonderful to know that there are people who notice and care about the ideas we keep talking about. It's more wonderful still, when they help highlight it for the rest of the world to see. A heartfelt thank you for that!

So here's to a little bit more visibility around diabetes in 2008. Because, yes, visibility is a very important thing.

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.

stranger than fiction.

"

Have you seen the wonderful movie stranger than fiction? Beyond the fact that it is a terrific story in it's own right, the use of information graphics as an overlay at the beginning (at the first half of this video clip) reminds me a lot of what life is like with diabetes. I'd love to see diabetes framed up this way. Boring, everyday activities, that we do like everyone else, layered with all the calculations and science and data and math of diabetes. It's a great concept they've laid out in this film. I just love it when something can show a better picture of the reality of life with this disease.

Hm, I feel a project coming on. I'd love to see a short video of a person with diabetes eating a meal and using all the information that goes through their mind before, during and after, as an overlay to the film. Blood test results, carb counting of food, ratios of carbs to insulin and bolus amounts calculated, numbers of units actually taken, time before insulin hits the blood sugar, glycemic index data, rates of the rise of blood sugar. You know, the stuff we deal with every day. Every meal. Every hour. Wouldn't it be compelling to see it that way? I wonder what people would think? I wonder if people would realize a little more, that what we do, can be at times, most certainly stranger than fiction?

understanding more.

My husband just got back from a long vacation with friends. For a number of reasons I didn't join them on their adventure. Some of the reasons are just regular reasons around schedule (I needed to be at work at the time they all could get away) and preference (8 people in a condo isn't exactly my idea of fun) and energy (lot's of plane rides and lot's of time to get there). Check and check. The other reasons were more diabetes related, having to do with ability (I can't scuba dive as a diabetic on the insulin pump) and reticence (I've had bad experiences in the past with people around being seen as pushy and a drag because of the schedule and regimen I need to follow with food and exercise) and a general lack of energy around a big vacation like this one (to plan for all the details of travel and all the unknowns of a new place). And then of course, there was the ever-present fact that I didn't want my diabetes to stand in the way of his fun. I hate that idea and worry about it quite a bit. How to navigate a partnership in light of the unending presence of diabetes is at times challenging. Not insurmountable, but definitely challenging. Like vacations for example. There's more to think about in our case than when you don't have a chronic illness to deal with, that's for sure. In the end, all of this added up to us deciding that he would go and I'd stay home. On paper it made sense, but like so many things, the plan and the experience can be very different.

Throughout the 10 days my husband was away, I found myself vaguely angry and uneasy. It honestly wasn't that I was angry at him. No, it was something else, but I just couldn't put my finger on what. Which didn't make sense to me. We'd talked about it and we'd decided that this was the best solution. What was the deal then? Why was I so out of sorts?

When he returned we sat down and talked about it all. No anger, more from a healthy curiosity and mutual desire to make it better. After much discussion, what it basically boiled down to was 2 things. Hurt and fear.

In the first place, I felt left out, pure and simple. Off they went without me, doing stuff I couldn't do, checking out in a way I could never check out. They were able to not only take a vacation from the daily grind, but also a vacation from diabetes. A vacation from diabetes. Wow. The idea is almost unimaginable. It was something I want so profoundly and something I can never do. I so wanted to be a part of their group instead of mine. Yep. I felt left out in a big way.

The second thing we discovered in our discussion was that I also felt afraid. I was afraid that if I'd joined the group, in a circumstance that required them to spend 10 days with me and my diabetic life, they wouldn't have understood and consequently wouldn't like me anymore. Worse yet, I feared that my husband would decide that life was so much better without having to deal with diabetes on a day to day basis, that he too wouldn't like me anymore. Given the choice to live with diabetes or not, I could imagine a person, even one that loved me, running screaming for the door.

And it's not like my fears are unfounded. This has happened to me before. It's been a long time since then but the memory of it's devastating impact on me is clear and sharp. Until my husband and I talked about it though, I didn't realize how much it was still impacting me. I thought I had moved on, but clearly I hadn't. Even though this was a new day with new players and even though my husband wasn't this other man, I was projecting my painful experience and consequent fears on this present event. Ok, so now I understood a bit more about what was going on here.

Wow! It felt like we found a diamond of an insight. Hard but precise and in a strange way, beautiful. It's an insight that both my husband and I can work with. Diabetes and the fear of rejection. That's not one you read about in the manuals you get from the doctor. No that's one you don't expect to have to experience on top of having a disease, but unfortunately you can. Being different, being misunderstood, being seen as difficult or selfish or demanding when you're actually taking care of your disease, can have real and profound ramifications. Trying to balance the desire to fit in and the need to take care of yourself, can develop into a real reticence to try new stuff or risk joining in again. Feeling safe and understood isn't easy with this disease. It takes a lot of explaining on my part and a willingness to listen on the part of others. And this experience has taught me that sometimes even I don't know what's driving my feelings. In that case, how can I give people the clues they need if I don't see them myself?

So what we're going to do after all this, is take some time to figure out the best vacation that works well for us both. Something that will be fun and relaxing and healthful and easy. And yes, something that might stretch my comfort zone a little in terms of adventure and unknowns. We're going to talk about it more beforehand and not make assumptions without checking in with each other. With a little effort and a little exploration, we're going to go on a vacation. Sometime soon, some relaxing fun will be had by all. And I can't wait!

This experience reminded me, yet again, that living my life with this is disease is a process. A journey, as a person coping with a very difficult and complex disease, as a person dealing with all that is not understood by others, as a person so vulnerable to the vageries of this disease and in turn, the kindness of others. A kindness that is demonstrated to me every day. And a kindness that sometimes isn't demonstrated and can boil down to insensitivity and cruelty. In the end, it's a process of searching for and finding a few safe people and a place to just be. In the end, it's about learning and trusting and starting over and building and taking care. Of myself, my relationships and my health. For me, that's the best I can do.

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)!

more ya-hoo.

I've been in a bad mood about my diabetes lately. Feeling extremely sorry for myself. I've gone down the rabbit hole of self pity and though it's totally understandable, it's not a fun place to be. I know this happens on occasion but today it stops. Half empty is becoming half full. Feeling the way I've been feeling only makes me lonelier and grumpier and harsher. And ultimately it only hurts me. Though I understand why it happens and I can even justify it, I woke up this morning realizing that I had a choice here. So enough of the boo-hoo and on to the ya-hoo. It's sunny and gorgeous and the day is young. Happy day.

dana's art in the diabetes made visible pool.

I just stopped by the diabetes made visible flickr pool and wow, it's just cooking along. I haven't been by for a bit so was I ever thrilled with all the activity that's been going on there. We're up to 114 members and there are lot's and lot's of amazing photos too (495 at this posting to be exact). Like this particular stunner from dana showing her incredible thesis project. I absolutely love it, both as a visual statement and a piece of art. Art like this helps break down the barriers of language and intellectualism, allowing the viewer to feel the story rather than distance themselves from it. Not only is this visually compelling, it's also so important because of the message it conveys. Wow!