aiming for grace

dreary diabetes digs.

This is a view from inside my diabetes clinic exam room. I have a new phone that takes pretty good photos and luckily it's actually logical around how to send them to my computer, so now it's even easier to take stealth photos. I posted them up on flickr and in the dmv pool, though I'm not sure anyone will really want to see them. Collectively, they're pretty dreary (and some are blurry too, but for some reason I like blurry photos). Dreary, dull and dare I say, a bit depressing. Ah, another redesign opportunity!

a twilight zone moment.

My last post was, yet again, all about design. Obviously, design matters a lot to me. It's turned out to be very cathartic to have a place to let my love of design and my life as a diabetic converge in conversation. Integration of these 2 important parts of my life has really helped. (And thanks to everyone for listening, by the way).

So as I said, I blathered on for quite a while about design in my last post. I felt better afterwards. It was Sunday so the New York Times was on the driveway, waiting for me to finish. I love the special Style magazines that periodically show up in the Sunday Times. Fashion, Home, Travel. This week it was all about travel and one of the features was about Dallas, of all places. All the fabulous places to go there, all the great resources and experiences, basically all the high grooviness in Dallas. On page 145, there is an image by peter rad of a high-end design boutique called collage 20th century classics. Very chic, very mid-century modern, very high design. I'm looking at the picture (having just finished writing my own little diatribe about the importance of design and the pump remember) and what do I see? Is that woman on the right wearing a pump? Are you kidding me? It looks like that tell tale pager like form with big buttons and arrows on the front that I so love? Isn't that my favorite tubing snaking out of the top there, ready to be snagged on a fabulous chair arm or door knob? I've never seen a pump in "regular" picture before. Ever. And suffice it to say that a big part of my job is reading magazines, newspapers and blogs. I read tons of them. Really. This is a first. I've never seen an image of a person wearing a pump in regular life before. World's collide. Cue up the Twilight Zone music. Ok, maybe I'm over-revving a bit here, but still, you have to admit, it's a little wild.

pump 2.0.

When I first got on the pump, it was a revelation. A life changer. The quality of my day to day life improved dramatically. And I've been on the pump ever since. What's interesting is that inevitably, time passes and the dramatic improvements, the contrast between the pump and shots, fades. It becomes normal to live on the pump, to have more consistent blood sugars, to make it through the night without highs or lows interrupting me more times than not. What was becomes less stark and clear, as what is takes over as the norm. Which means that the miracle of the pump as compared to my life on 6 shots a day, also becomes less stark and clear over time. The particular annoyances of life on the pump begin to emerge. At first they are realizations, like "oh wow, this tubing is kind of a drag" or "hm, I seem to always bump against the hard surface of the pump when I get into the car". At first, these annoyances are small in comparison to the joys of more flexibility throughout the day. At first, they are an easy trade off, because I still remembered clearly what I was trading off.

Fast forward, 6 1/2 years later and I admit that now I live the reality of the pump and try to remember the difficulties of the alternative. It's all about perspective and I know in my heart, that the pump is better for me than shots. I'll never go back. But man, the pump is not perfect. It presents it's own tyranny into my life. And as a designer, I can't help but to expect more as I've said so many times before. Why can't they fix the problem of bubbles that so many people have commented on? Why does the tubing have to just hang there, ripe for snagging when dealing with clothes? And my personal gripe, why does the thing have to look like a product prototype circa 1989? Where's the finessing, the detailing, dare I say it, the beauty? All good and important design questions that should be addressed. I get the product design and development issues that david so knowledgably outlined in a comment recently on amyT's post about the need for better pump design (p.s. thanks for the kind nod Amy!). They run out of money for "user interface" and so we get to live with a less than finessed object inserted into our body and strapped to our waistbands (or bra straps or legs or panties or whatever), day in and day out. Is this the best that can be done here? Safety and functionality (engineering) continue to be seen as an either/or proposition to user interface (design), rather than 2 parts to the same design brief. Working doesn't just mean "not killing you". Working means working in a real person's life. Yes, there is heirarchy of criteria and yes, "not killing you" is tops on the list. No debate there. But if the design of the pump, which clearly offers a positive alternative to shots, is a deterrent to some people in choosing to try it at all (as I know is the case for many), isn't that a failure of "working" at it's most basic level. Yeah, you can say that people need to get beyond the design issues to recieve the benefits that the pump has to offer, and though that may be true, the fact is that people, who have reasons and fears and issues about the pump, are the ones who matter here. If design is a stumbling block to some people, it needs to be addressed. Not because it's nice but because it's a medical and business issue. If someone hates your product design so much so that they don't buy it, even it will make their life better, you have a big problem on your hands.

But ok, the things designed, it's out there, so my thought is, let's move on to insulin pump 2.0 please. Which can mean new technologies we've never heard of or new approaches like the omnipod. But please. I'm pleading with you! Don't stop there. Please think about how we can wear this thing comfortably, with a dress or pair of jeans or a swimsuit. Please think about whether the clip system snaps off when you sit down in a chair. Please consider how for us, this medical device is a life device and as such, should feel and look good, not other. At it's best, the pump 2.0 should seamlessly integrate into our lives which are full of challenges small and large. Clothes, movement, baths, embarrasment, skinny arms, you know, just stuff. Everyday, regular life stuff. Though the pump is so much better than the alternative in my opinion, it's also my opinion, that it still has a long way to go.

skirts are the new lemonaid.

My skin has been feeling a bit raw for the past few months. Tired, over-used, abused by the pump. I was grumpy about it, but I tried some new sites on my legs, in the hope of giving my "favorite" spots a bit of a rest. It has worked to some degree, but the leg sites seem to get more irritated for some reason. Maybe it's the seams of the jeans rubbing against them or the inevitable tugging they endure from the snagged tubing as I'm getting dressed or undressed. Whatever the reason, it's meant a couple of infections at the site, which is a new delight to have to deal with. Great! Now my legs and my hips feel beaten up. The arms won't work, the stomach, not so much. So what to do?

Luckily I'm a girl so the answer, in a word, is skirts. I realized that less tight, heavy denim with seams and waistbands rubbing against my sites might reduce some of the irritation I've been feeling. So I tried wearing skirts to work the last couple of weeks and guess what, it helped. A lot! I hauled out some old skirts I've had in the closet for ages but rarely wore. I went shopping for some new sassy ones, which is always fun (I love new clothes, especially when I can justify them as a "necessity"). I figured out how to wear skirts in cool weather and still stay warm. It took some thought but it worked and I'm pretty excited about that. It sounds so simple, when you think about it, but it took ages for me to actually figure it out. Who knew that skirts would turn out to be the lemonaid from the lemons, of my tired, unhappy sites?

capturing the details.

I really appreciate art and what it brings to the world. I can't imagine my life without art. Making it, appreciating it, thinking about it. I love it when I see the world differently because of a piece of art or a particular artists take on life. Like the people who've I've mentioned before, who photograph everything they eat for a year. Or the artist, who's capturing his entire life, every minute, every day, for a project he calls tracking transience as a reaction to being stopped, questioned and proven innocent after 9/11, thanks to his pda calendar. Or this project from microsoft called my life bits. All very interesting iterations on the theme of capturing and cataloguing some part of ones daily life in "scientific" way.

And what I find interesting about it personally, is that it highlights the fact that I often have to do that very thing, while living with diabetes. And because I have to do it, I find it a burden, not a source of interesting insight or commentary on modern life. I see it as a chore instead of information. Is that just because I have to do it? Is it because it's just one more annoying detail I have attend to around my diabetes? Is it because it requires my attention yet again? All interesting questions which I probably wouldn't have considered, if it weren't for art. I like that. I like stopping and questioning stuff I just take for granted. I like the opportunity to see what I have to do in a different context. Especially if it gives me an opportunity to frame up that task in a happier, more interesting way.

Images are a screen grab from various photos on flickr so thanks to those taken by someone other than me.

spring and hope.

I saw my doctor this week for my quarterly checkup. My A1c was great. Feet fine. Eyes good. Shoulder's are slowing improving. All's quiet on the western front. But still I left feeling blue. And stayed so for a couple of days. Maybe it's because we talked about how things on the research front weren't particularly stunning these days. Or the fact that though there was some new technology on the horizon, for now it's pretty much what I've got with the pump. Or the fact that some of the promising stuff I'd heard about gene therapy from my orthopedic surgeon was, in fact, not true when it came to people who already had diabetes. Ok then. All's quiet on the western front, but still, it's going to be a while until we see the dawn. And for some reason that fact really got to me this time. I usually don't spend a lot of my time focusing on the cure, so why did this information send me for such a loop this time?

I was telling this story to a friend today and she summed it up beautifully. She said that though my doctor never meant to, he kind of snuffed out my hope for a better future, at least a better near future. He was just being honest and I don't feel any bad feelings toward him. It's just that I don't have much hope about this all getting better anytime soon and that's sad. That's all. Sad. And I was for a couple of days. Which is understandable.

But, as always, the acute sadness passes. You see, it was sunny today. And warm. Very pretty and spring-like. Too lovely to stay sad for long. So regardless of the facts, I think I'll still have a little hope. It's the season of hope after all. Spring is about promise and the beginning of better days to come. For now, I think I'll focus on spring and in the process, still nurture some hope for a better future with diabetes, even if it isn't exactly the near future.

a re-design brief.

I keep saying that design matters. Well lately I've been thinking about what I would do if I could redesign the insulin pump. I know that engineering matters first, but for this exercise, let's assume that the engineering works. At this point I'm interested in what I would actually change to make an insulin pump better. Better to live with. Better to interact with. Better integration into everyday, 24/7 living. What doesn't work? What bugs the crap out of me. What is the actual design problem?

A friend of mine who's an accomplished designer put it perfectly. Don't focus on the solution. Define the problem. So that's what I'm going to do. I want to create a design brief for the people who could do something about this. It takes the identification of the problem for the problem to be solved. It takes a picture first to make a change. It takes a request before anything will evolve. It could be fun. It will definitely be cathartic. And who knows what could come of it. You just never know unless you try.

And if anyone has any thoughts about design issues or annoyances or problems they've experienced in with the pump, I'd love to hear them. I'm interested in aesthetic issues, user issues (like readability or tube snagging or function navigation etc.), as well as integration issues (like how easy or difficult it is to wear with clothes, like dresses for instances, or the clip, it's size, the hardness of it etc.). Since I'm only one person I have only one experience. Any other insights you might have would be great. Plus how cool would it be to turn the silent endurance of these issues into a healthy and positive conversation. A conversation that could, very possibly, bring about a change!

Thanks for the image from skiingutah.

with fresh eyes.

I just had coffee with my young friend who was diagnosed with diabetes back in September, just before leaving for his first year in college. And he's working at it, though it is such an adjustment. It's so strange for me to remember the beginnings of this journey, from the vantage point of 20+ years down the path. The technology is certainly better and there are promising advances in the wings, but still, there it is. The path of learning how to navigate all the new rules, the understanding of all the science, and then the figuring out about one's own particular body in relation to the disease. What eating a slice of pizza does to you. Or what exercising at this time of the day means in a couple of hours. All the countless details and vageries that make up this new life with diabetes. There it all is. Again.

I am struck, quite simply, with the courage it takes to do this. And the skill it takes to do it well. I see it with fresh eyes today, 20 years down the path, through the eyes of my young friend, starting at the beginning of his own particular journey with diabetes. It makes me sad and angry and frustrated. I don't want anyone to have to face this, but I especially don't want this particular boy to have to face it. I simply wish it wasn't so.