aiming for grace

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.

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.

precious reserve.

Everybody has only so much reserve to deal with the annoyances and struggles in life. As I get older, the idea of my reserve as a precious thing has become clearer to me. Especially in light of my life as a person living with diabetes. Diabetes taps on a lot of my human reserve, some days more than others, but certainly to some to degree pretty much every day. For me the choice I see isn't whether or not to deal with what diabetes presents, but rather, with what level of grace and composure I can muster in dealing with it. And that's where that wonderful, little savings account of energy and wisdom comes into play. That's when I tap on my reserve. And usually, knock on wood, I can rally, or find comfort, or just take a nap thanks to my reserve. Yes indeed, a reserve is a very precious thing.

So what's recently occured to me is that precious reserve I have, is a thing to be protected and cherished. It's an important tool in my diabetes tool box that shouldn't be frittered away on silliness or wasteful things. Like unnecessary drama or people who drain my energy or situations that just won't pay off in the long run. I know these people and situations, and I'm realizing that if I choose to be there too much, I have that much less of my reserve left to deal with the dramas and situations diabetes will most certainly present at any given moment. My reserve is not endless after all. It can be tapped out. It needs to be replenished with energy givers and comforting experiences and just plain fun. I don't know why but this feels like a pretty big revelation and game changer for me.

Now I'm not so delusional as to think that all of the everyday annoyances of life can be avoided. Life has lot's of dramas and drama queens and kings that you just have to deal with. But what I'm just beginning to understand after 21 years with diabetes, is that where I can, avoiding the people and things that unnecessarily drain my reserve is a really, really good idea. Diabetes is unrelenting and unending. My reserve is not. Focusing my energy and time on taking care of replenishing and feeding it, means I'm better equipped to cope with all that diabetes throws my way. And that's something that can only be really good in the long run.

happy thanksgiving.

Happy Thanksgiving everyone! I am so thankful on this day for all the support, insight, confirmation, visibility, humor, ideas and solidarity I receive from you! I am thankful for a more bouyed, less lonely journey with this disease because of you. I am deeply thankful to you.

Have a wonderful day full of celebration, joy and health!

healthy in between.

The longer I have diabetes the more I feel like I live somewhere in between. In between how the world defines sickness and health. In the last few months I've had a number of people say to me that they don't think of me as having health issues because I'm so energetic and full of life. They think of me as healthy. Which I am. Healthy, with diabetes.

I'm glad that's how they see me, don't get me wrong. I strive for vibrancy and try to lead with my whole self rather than my disease. Having said that, I've worked incredibly hard at finding the right visibility for my diabetes, first to myself and then to the world around me. There's too much stuff I have to do as a diabetic to just get to square one. I'm not going to erase that reality just to fit in or pretend that I'm like other people who don't have diabetes. The dance therefore becomes one of balance, of what to show and what to keep private and quiet. I never lead with my diabetes, mainly because that's not how I primarily see myself. But the fact is that diabetes is inextricably a part of me and has deeply and profoundly effected who I am. I don't lead with diabetes, but I don't hide it either.

What I've struggled with lately, is because I am healthy with diabetes, when I do reveal a diabetes challenge I'm experiencing, it often goes unheard. Or worse yet, is dismissed because "I'm so healthy". It doesn't come up a lot, but when it does, I often find that I need to reiterate the issue a number of times before it's noticed. It seems the world sees people as either sick or well and what I'm realizing is that I'm neither, and both. Neither wholly one nor the other, and both, to a certain degree, all the time. Good days and bad ones. In control and not. Up and down. With diabetes it's never static and so, the usual definitions of health don't really describe my life.

And that can leave me feeling invisible or inauthentic or left out or alone at times. And that never feels good.

So what I'm working on is how to find the right tone of voice, the right volume, the right balance of lead and reveal. I'm certainly not there yet, but I'm working on it, which helps, suprisingly. My goal is to be fully whole, fully present to myself and the world around me in terms of my diabetes. My goal is to be fully healthy and vibrant in this life in between.

saving up for a rainy day.

 

Things are finally getting a bit more predictable again, thank goodness. Nothing a little radical change in your insulin dosage can't fix. Lot's less insulin during the day (and significantly less insulin reactions as a result) and lot's more insulin in the night (which unsurprisingly means less highs as a result). You know, totally flip what's worked for the last 2 years. Logical results to an illogical change. Why have my insulin needs changed so profoundly? Why now? I just don't know. I can't fathom a guess. It's yet another unsolved diabetes mystery. But at least it's better. Honestly, that's all I care about. I've been thinking a lot about what helps during times like these. I realized that when I'm actually in a time like I've been going through, it's pretty hard to remember what will actually help. I'm tired, I'm frustrated and I'm worried. Not really the best mind space to conjure up ideas about how to feel better. It's kind of counterintuitive. So what I'm thinking of doing is starting a "what helps" box. A place where I can gather ideas around what helps me in tough times. One thing per index card or scrap of paper. Over the next few weeks, I'll look for a lovely, special box to keep the cards in. And then on those challenging days, during the tough period, I can go to my box and draw out a "what helps" idea at random. Get a massage. Take a nap. Watch a Miss Marple movie. Get a pedicure. Take a picture of the cat. Listen to music. Walk the dog. Take another nap. Take a day off. Write a truthful, sad post. Whatever helps. It will be fun to add to the box as ideas come to me, especially those that occur when I'm feeling good. Ideas that I can save up for a rainy day. Ideas that will help me through the inevitable tough stretches ahead. We'll see how it turns out. It's bound to help a bit. And that's all I'm looking for. A little help on a rainy (or snowy) day!

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!

head in the clouds.

I love this image of sky from ace jet 170, because it reminds me of so many helpful metaphors. The benefits of "looking up". The importance of "blue sky" thinking. The idea that it's normal for things to constantly change, like "clouds in the sky". These are all useful adages for me lately in terms of my diabetes. It's been a bit better over the last week, a little more reliable, though still wonky at times too. I'm really trying to take the long view where I can and ride the inevitable waves, rather than sweat each particular up or down. To be frank, it's actually helping. The one constant of my disease is that it ebbs and flows, easy some days, not so much on others. Focusing on the long view seems to be helping me be gentler on myself when it's not going so well. It's also helping me be smart when I want to tempt fate (think cookies or cake or pie here) after it's been good for a couple of days. So I'm encouraging myself to spend a little more time "looking up", focusing on the long view and celebrating the beauty of the sky. No harm in that if it makes things a bit better after all, right?

3 fun things list.

Ah, the goal of more fun. I realize that it's easy to say, but not always easy to figure out how to achieve. Especially with diabetes in the mix. But still it's a fine goal to have. And a smart one to pursue.

In that spirit, I recently stumbled on a great post at happy silly that I keep thinking about. Just like noticing what helps, maybe getting into the habit of noticing what's fun, making a top 3 fun things list (a variation on the happy silly happy list) every once in a while, will help me focus on fun more. Knowing what's fun, having it top of mind, makes it a lot easier to lean towards it and maybe even attract a bit more of it my way. I know it sounds woo woo, but heh, it's worth a shot right?

So here goes, my top 3 fun list for today: *gardening on a cool summer morning, *going to the farmer's market for fresh raspberries, *watching a new miss marple mystery with my sweet husband and two silly dogs.

Yep, sounds fun to me! Can't wait to do them all. If anyone feels like sharing, I'd love to hear what's your list of 3 fun things today.