aiming for grace

inside out.

I'm heading back from the art center design conference at the moment, sitting in the airport, bone tired. It was a pretty good conference in a number of ways, interesting speakers, a wide range of topics discussed and the opportunity to see people I've come to know over the years but only see at this sort of event. As with any of experience like this, there were some very special presentations and insights I'm taking away and will ponder for days to come. Tops on that list for me was an unexpected exchange between the moderater john hockenberry and one of the last speakers of the event, aimee mullins.

john hockenberry is truly the best moderator I've seen at the many conferences I've attended in my career, bar none. He's brilliant at providing insightful analysis and personal thoughts throughout the event which serves to connect one speaker to the next and keeps the flow and energy of the event high throughout. He's also funny, charming and entertaining in his own right. And, he also happens to be a person who lives with a wheelchair because of a spinal cord injury, which on one level has absolutely no baring on anything, and yet on another more personal one, remains utterly significant for me. I remember the first time I attended this conference and watched this man command the stage with such intelligence, skill and humanity. I remember being moved and surprised in spite of myself. As a person who has struggled with the invisibility of my own health issues, it was truly a revelation to see another person whose physical differences couldn't be hidden, present to the world so wholly and comfortably in his own skin. I remember thinking that I was being offered an opportunity to learn something about my own journey with physicality through his.

Well 4 years later, this is still the case. This year the conference invited an amazing woman to present, the world class athlete, actress and model, aimee mullins, who also happens to be a double amputee. Very accomplished and stunningly beautiful, this woman who'd I'd seen from afar in many magazines and art pieces, was a real force of nature in person. Self confident, strong and positive without being pollyanna or denying of what her physical experience meant, I found myself rivetted by her talk. Again, like 4 years before, I felt as if I was being offered a rare opportunity to learn about my own physical challenges through another person's experience and view. And that felt powerful and precious, like a gift being presented to me by the universe.

But, I'm getting a bit ahead of myself. Before ms. mullins spoke, mr. hockenberry introduced her as he had done with all the other speakers. But this time, unlike the others, he began with a personal story about his own experience in rehab soon after his accident. As he told the story of having an intellectual realization about his body's new, strange reference point and consequent adjustment to moving through the world in a wheelchair instead of a walking person, and of trying to engage the attending physician in conversation about this idea, only to be tacitly dismissed by the doctor. I noticed a pitch in his voice that I hadn't heard before. It probably wasn't obvious to most of the people in audience I imagine, but I heard it immediately. It was that deep, quiet, shock of realizing you'd become something different than you were before, that you were becoming someone objectified and abstracted. In his voice I heard that horrible feeling of being made invisible, of having one's new life experience ignored and dismissed. mr. hockenberry was describing his new physical experience to a person who now only saw him as paraplegic (other) and not as an intellectually curious person too. I may be projecting or all wrong here, but that's what I thought I heard, quietly, underlying his story and voice. He went on to desribe this moment as the beginning of a profound isolation of experience, that in the absense of interest or curiosity on the part of the doctor he was trying to talk to, he entered what he thought was a very singular and particular journey alone.

And I immediately knew what he was talking about. Though in different circumstances and with a very different physical condition, I knew that feeling. I knew that loneliness and feeling of invisibility and dismissal too.

mr. hockenberry then went on to describe how he had met ms. mullins 30 years later and how their proceeding conversation about their personal experience with physical disability was a revelation to him. He described how he quickly realized that here was a person who understood what he was talking about to the disinterested doctor so many years before. Here was a person who was not only fascinated by the ideas of different physical vantage points and the dynamics of navigation, but one who had also developed language and philosophy around it. She fundamentally understood his intellectual curiosity around his physicality and also seemed to embody the fact that the intellectual and philosophical exploration of the experience was key to living life fully and whole. What followed was a remarkable hour of two interesting and accomplished people discussing their physicality, their exploration of it and their development of a philosophy and sense of opportunity around it. I sat in the audience and watched in amazement as these people talked about ideas I'd grappled with for so many years. It was so strange and wonderful to watch two other people consider, explore and even disagree about physicality, disability and the idea of differentness because of it, in public and with such vigor. It displayed a new normalcy, some of my normalcy as a person with a chronic illness, for all the world to see, publicly and without pity or shame. I felt so validated in my own intellectual instinct and curiosity around my own disease process and journey because of this. And beyond that validation, I was lucky enough to witness a real and robust exploration of ideas and viewpoints that I have rarely seen or participated in. Suddenly I realized how unique and unprecedented this was, that this public conversation had moved far beyond the usual idea of loss and struggle, the outside in view of disease and disability that normally defines the conversation, the one where grief and invisibility and struggle are the focus. Instead I was watching two smart, whole people having a knowledgeable and probing discussion from the vantage of inside out. They were demonstrating a new type of normal I'd never really experienced before. Not a less than normalcy but actually a more than view of normal, brought to bear because of this journey with the physical. Asset, not just disability. Opportunity, not just loss. And at the end of the day, what ultimately I take away from this event is that this journey of chronic illness is a profoundly human one, deep, exciting, personal, tragic and full of possibility all at the same time. The more that it's talked about, privately, publicly, intellectually, artistically, personally, the more that becomes clear. To me. To the world. The more it's talked about and explored the clearer the humanity of this journey becomes.

And that's a very, very good thing don't you think?

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.

dear birdie.

I stumbled across this site future me the other day, and I just can't stop thinking about it. I love it's simple premise, to write a letter to your future self today, set a date in the future to receive it and then ideally forget about it until the day it arrives. It's interesting to think about what the me of today would say to the me of tomorrow as well as imagining the me of tomorrow, reading what the me of today wrote to me "back then". There's a different tone and clarity in imagining writing a note to oneself with the knowledge that one day it'll actually be sent to you. It's a very interesting and exciting idea.

I've been wondering what I'd say in a letter to my future self, if I was to do such a thing. And what keeps coming up for me is that I'd write something about hoping that I'd found more peace in living with diabetes. More peace. More comfort. More gentleness. More balance. That's pretty much where I keep landing. I don't think I'd say much about better A1C's or new technologies or better management. No, I really think I'd send hope to myself, hope that I feel more peace in my heart around diabetes, pure and simple.

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.

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?

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)!

team pizza.

I had an appointment with the nutritionist at my diabetes clinic recently. It was so great. I always learn something new about food and how to deal with all it's implications to my diabetes. I also learn stuff about myself in the process of learning about food and my diabetes. Like the fact that over time, and in the effort to keep my life and diabetes regimen simple, I gradually narrow the choices I think I have. A few bad experiences with pizza for example, and over time pizza comes off my list of foods I want to eat. Which on one hand makes logical sense. There is no sense in continually going back for more of the same bad result. What's interesting to me though is how I decide that no pizza is the way to do that. After all, I wear the pump and it has the ability to do dual wave bolus', a feature designed for foods like pizza. That's another way of dealing with the pizza issue, but it hasn't been one I've even wanted to try, because it's yet another thing to have to try and experiment with and master. Another thing, on it's face, means more work, more highs and lows in the process, in a word, no fun. So my decision tree shuts off that option too and I'm back to no pizza for birdie. And so it's been years since I've had pizza for a meal. I've nibbled here and tasted there, but no crispy, thin crusted, cheesy delights as the main course for me. No, no, no.

Well, what was great about this visit to the nutritionist, was we talked about the process I go through to get to the pizza no. The reason's behind saying no, without judgement or recrimination. My wonderful nurse empathized deeply with me as a person navigating diabetes. Her empathy allowed me to see the choices I was making in a clear and supportive light. My husband was also there which helped further, because he's always trying to make my life better with diabetes. A professional and a loving partner, team members in my journey with diabetes. How amazing is that? What was great was we looked at the pizza story as a team, and we problem solved together. My nutritionist explained the biomechanics of how fat effects absorbtion. Check, on the science. Now the project. We came up with this idea that over the next few weeks, we'd just solve the pizza dilemma. Not all food dilemma's. Not dual wave bolus' and square bolus'. Nope we'd just solve pizza. We came up with a plan. I'd first eat a slice of pizza, test every hour after the meal for the next few hours. I'd just collect the data. Then I'd meet with my team to assess the data. We'd then walk through the dual wave process together. Then I'd try that with another pizza slice. Report back. It became a kind of a fun project. A team project. A small and managable diabetes project. With the end result being that I'd get to have a little bit of pizza back in my life. Fun. Not work. What fun.

Ok, so I know this sounds kind of remedial to all the folks out there that are wizards at their pump. It also may sound kind of lame that I've limited myself so much. I know that this isn't rocket science and I even know I'm smart enough to figure this out without the need of advice from a nutritionist or my husband. I know that I'm the one that's limited myself and that in the end, I'm the one that's going to need to do some work here. But frankly, that's not the point. The point is that I get filled up with diabetes management and technology interface and data collection. I'm not by nature a scientist or an engineer. My heart doesn't race with excitement when I think about yet another experiment where my body is the test animal. My personality, my tenure as a diabetic, my preferences don't predispose me to experimentation in this zone. So at the end of the day, I need some help in moving beyond my predisposition, and that's where my crack team comes in. By doing this simple small thing with them, I get beyond my habit, my decision tree, my belief of no pizza for me and end up with a reservation at ken's artisan pizza. Me, my team, my dual wave bolus and hopefully, the thinnest, crispiest, cheesiest pizza they make as my main course. It's a small thing but I think it's actually a big thing, because in the end, a little more pizza in my life would be nice. So now I'm pretty excited about this small adventure where before I was leary. It will be fun, not to mention the fact that my husband wants to have birdie's team pizza tee's made for the project. A great team, pizza and silly teeshirts. Boy am I the luckiest girl ever!

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?

diabetes twitter.

Modern life is so interesting. You've got to love this aspect of new technology. Better connections can bring support, insight, new understanding and shared experience. So very cool.

mind and body disconnect.

It's been a few days since I got off the sensor. I was supposed to be wearing it for 6 days but it went wonky on day 5 so after consulting with my nurse, I took it off. Though it never hurt while I was wearing it, it was amazing how relieved I felt when I removed it. I seemed to relax in a place that I hadn't known was tense. Deep down. Away from my brain. It's almost like my body has an intelligence of it's own, seperate from my intellectual, analytical mind. No matter how much my mind says, "this is good for me", my body, somewhere deep inside is saying, "get this foreign thing out of here". I exist in between my honest appreciation and desire for technological advances that will elevate my care on one hand, and my primal, physical resistance to the very same technology on the other. Which leaves me tired and conflicted. Both feelings are powerful and deeply compelling. Both tug at me hard. And there's no clear answer, just more choices and questions to navigate. It's good to have choices, but it's also very tiring sometimes. Especially when your mind and body aren't on the same page.