aiming for grace

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.

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.

a magical day.

Yesterday was one of those magical days. Start to finish. It started out with a project I've been asked to participate in with some colleagues from work. A rebranding exercise for a local non-profit who works with childern who have cancer, their families and friends as well as the hospitals, doctors and staff who care for the child. They "fill in the gaps" between services offered by the hospital, other non-profits and the state. The woman who started the organization, lost her 5 year old to cancer many years ago and one of her ways of dealing with her horrible loss, was to build a place of comfort, joy and support for others who have to go through what she had to. She's created a remarkable organization, focused on joy. Their working principle is that whatever time anyone of their clients has, it should be filled with as much joy and happiness as is possible. So they bring music and musicians into the cancer ward. They connect kids with 'buddies' who hang out with them during chemo, play with them when their parents need a break, whatever the child needs. They provide a community and navigational tools for overwhelmed families. It's just a lovely and worthwhile organization.

So I was asked to help on this project, by a man I've worked with for many years, and whom I deeply admire. This man has always been such a support to me through my own journey with balancing diabetes and work. Supportive, safe and an advocate for me. So when he asked if I would help, I did not hesitate to say yes. But I have to admit that inside I was a little nervous. Nervous about getting close to such a sad and hard place. Apprehensive about feeling sadder, when I work so hard to find joy in my own life. And guilty that I was feeling these feelings.

After a bit of thought though, I realized that my friend had invited me to work on this project because of my own experiences with illness and disease. I realized that I had something to offer beyond my business and design skills. I had a special insight that though, not exactly the same as what this organization dealt with, had some shared aspects that could prove useful. My experiences with living with diabetes could possibly add to what my team had to offer this group. So though I was a bit scared, I was also excited.

So yesterday we met with the organization and it was amazing. It went so well and the project is very exciting. I brought my 20 things I know about diabetes book as well as my collage journal, to show a visual expression of one person's disease process. And people saw it and understood it in a way I've never experienced before. Plus the insights of living with disease well, did help in the project, both in credibility and understanding of the right tone needed. There is still a lot to be done, but we are off to a good start. And what an exciting and meaningful day!

I came home very tired but happy, excited to share all that had happened with my husband over dinner. My husband I discussed going to a nice restuarant and maybe a movie afterward, but in the end, we ended up just going to a local mexican restuarant chain. The food is pretty good but the atmosphere is basically cafeteria style. Lot's of tables, with people you don't know, eating close by. I sat down first while my husband was getting the food. I took out my hello kitty bag, pulled out my bloodtest meter and took a blood test. And then suddenly, a voice came from behind me. A young boy, probably around 8, bounced into view, exclaiming excitedly that "he had one of those too". I said "you do! Wow, we're just alike." He could barely contain himself with excitement. He told me how he had a couple of meters because sometimes they forget one. He told me how he'd been diagnosed a year and half ago and how "he was getting the hang of it". We talked for a few minutes and then his father came over and said how his son was always noticing people with diabetes. That he had been sad about taking his blood test and shot earlier that evening but now he was happy because he'd found someone else who also had diabetes too. He then turned to his son and said, "see honey, you're not alone". My husband arrived and we began to eat and again a voice came from behind. The little boy said from his chair, "you're having a burrito and I had a burrito and we're both diabetics!" And then he smiled. I said yes, we were a lot alike and I literally had to choke back the tears. After a while the family got up to leave and as they passed the table, the boy said goodbye. His father said thank-you to me for talking with his son and I said that no, it was all my pleasure. I then turned to the boy and said I knew that the bloodtests were hard but he was very brave and strong. His dad said to his son, "yes you are strong" and flexed his arm. And his son laughed and said, "dad, it makes me strong on the inside not the outside!" and giggled and was gone. Now I really had to choke back the tears.

Oh what a day! I still can't quite believe it. I felt so visible, connected, contributing, and recieving as a diabetic and a person. As a person with diabetes. As a whole person with diabetes. The day was about giving and recieving so much in return. And then in the evening, by just taking a blood test, getting the unexpected gift of connecting with such a sweet and wonderful boy. His joy in finding someone like him, his excitement in sharing all that he'd accomplished, and his wisdom in knowing that he was stronger on the inside because of all that he had to do with diabetes, truly moved and honored me. I've never had this sort of thing happen to me before, and how amazing that it did happen on a day that had been so focused on children and illness. It was just magical.

Yesterday, I learned a big lesson. By opening up to something that I was nervous about, by showing up to help others in need, by trusting my friend in asking me, by acknowledging what I have to offer because of this disease, by being open and sharing of my personal insights, I was showered with unexpected gifts and affirmation in return. By reaching out beyond my comfort zone, I was comforted in ways I never imagined were possible.

Oh, what an magical day!

no more brochures please.

Today was a day for dealing with details. Getting all the last bits together to send the taxes to the accountant. Burning some new cd's for the car. Oh yeah, and recycling. Shredding mail that has any kind of personal references, cutting up the cardboard boxes that all my pump supplies come in, as well as cleaning out my supply drawer of all the extraneous packaging that comes with all my supplies. Boxes, brochures, instructions. In each and every box, tons of paper that I never read, that has to be gathered up and recycled. What an absolute waste of trees, time and money. I get that there are probably legal reasons for the manufacturer to do this, but please, there has to be a better way. It's depressing enough to throw away a pile of used sets every 3 days, of which I'm more willing to live with, since I need to do it to live. But the rest of this stuff seems purely wasteful. If you've read the stuff once, it's unlikely you ever need to see another brochure again. They could send a package with all the stuff they want us to read when we first sign up for supplies. Don't pack it in the box every time (imagine how much paper alone would be saved when you multiple the thousands of boxes that are sent out every year). And don't even print the box (I don't need happy, smiling people on a box I rip open to get a new set from). Heck, do they even need to send the supplies in a box in the first place? I don't know the answer but it's at least an interesting design question to pose. These are all design questions that I'm not sure I'd have even noticed, if it wasn't for the sheer volume of packaging I have to deal with by wearing a pump. And though they are just design questions in the end, they do feel like ones worthy of consideration nonetheless. Because really, at this point in time, I think I've had enough pump brochures to last a lifetime.

it wouldn't hurt.

Wouldn't it be cool if our diabetes stuff was packaged like these skincare products by somme institute, instead of the scary medical way they are now? Ok, maybe not exactly like this per ce, but at least designed in a way that felt like it was part of regular life rather than something outside of it. I know it wouldn't matter to some people, but it would to me. I think it would make me feel a bit better about having to use all the products I have to use to take care of myself. I think it might make me feel a bit prettier and maybe a little less chronically ill. I don't know that for sure, but I'm pretty certain it wouldn't hurt.

comparing apples to oranges.

Don't even get me started about the new apple iPhone (above). I know I can't compare apples to oranges (pardon the pun) but I'm going to anyway. What I'm comparing here is intent. Look at all the care and thought and user consideration that's gone into this product by a company that continually bests themselves. They don't rest on their laurels. They don't stop at one iteration. They innovate. They progress. They make their product better for their consumers. In a word, they care. And in the process, they make mountains of money and change the economic game, because people want progress and they want their needs met. Because, guess what, people will pay for that.

I've ranted about this before, and I'll rant again, I'm sure. I find it strange and frustrating and at times, infuriating, that we have to settle for product that looks and feels like this (below). There are continuing improvements inside the box and that's great. We want that first and foremost. But I don't think it's a lot to ask that some improvements be made to the outside of it as well. Design matters. User interface matters. Living with a designed object 24/7 should make it matter more. I can't imagine that the people at apple say, great, we got the inside working better, so let's just not worry about the outside, let's just go with last years model. I'd love to see what Jonathan Ives would come up with if he designed a pump. My guess is, it wouldn't be this circa 80's pager box. My guess is that it would look and work a whole lot differently. I can't imagine that reinventing the phone was the easiest task to undertake. The fact that it is possible to do such a thing, makes me really wish that someone would undertake the design challenge of reinventing the insulin pump. Life is good, but it can always be better.

thinking about the "consumer".

This is what I'm talking about. Design does matter. Someone is thinking about making shots easier for kids. Someone is saying that there isn't just one way or one choice in syringe design. What a concept. Designing a "better" syringe for the "consumer" of syringes who happen to be children. It's still about shots, but it's also making the process of getting a shot less scary for a kid. By design. Because, in the end, it's the user, not the manufacturer, that really matters.

Via core77.

fashionably whole.

I've blathered on about the challenges of being a woman, wearing a pump and trying to be and feel stylish. Others have too. With all due respect to the pump engineers, it feels like they assume that everyone wears waistbands ALL THE TIME, regardless of gender, so a nice plastic clip is all you'll ever need. I've whined about the pathetic option we women have been given, of strapping the pump to our legs like we're some kind of modern day pirate, if we have the gaul to want to wear a dress once in a while. It's not the end of the world by any means but still, it's kind of demoralizing when the rest of the female world just gets to go with the fashion flow, while we're left the worry about how to deal with the lumpy, life giving brick attached to our bodies.

Case in point: I personally love the diane von furstenburg wrap dress. It's been around forever and given half the chance, I'd buy about a thousand of them to wear as a part of my perfect uniform. They're sassy, grown-up, comfortable and very flattering. But please, barring the velcro pirate trick, it's not going to work with my friend the pump. Somehow I can't imagine the body hugging silhouette working with you know what attached, well, anywhere. Sigh. I guess I have to pass on this particular fashion moment.

But sometimes, on the other hand, the fashion stars do align and there are some sweet choices that can work for a diabetic gal such as myself. Take for instance, the rise of the empire waisted silhouette. Fabulous! I've always loved the look and now, thanks to the shifting winds of fashion, there are a myriad of fantastic options to choose from. Pretty dresses, luxurious sweaters, flattering blouses. They are comfortable, very sassy at the moment and guess what, thanks to the design of the garment, no pump is ever going to show it's clunky little face when I'm wearing it. I splurged and got myself an amazing cashmere, empire waist sweater this fall and I love it. I feel groovy and I love the fact that my pump isn't hanging out there like it usually does when I wear my basic jeans, sweater, tee uniform. I'm convinced. I'm looking for more. Because they work. Because I feel less outside of the fun of fashion when I wear it. Because, in the end, I feel better, feeling pretty and sassy and hipper once in a while.

I feel more whole today with my diabetes than I've ever felt before. Whole and normal. But still, that doesn't mean that sometimes I could feel just a little more so, thanks to a groovy, cashmere sweater.

inspired by another industry.

When I first saw these images in the new york times article from this Sunday's paper, I thought they were sassed up wireless phones. At first glance, it made sense to me, given how ubiquitous cell phones are today. Of course someone would want to take them a step further to help make them more of a fashion accessory.

And then I read the article and discovered that this was a new hearing aid called delta, by the danish company, oticon. It is a medical device! A medical device that didn't look, well, medical. It looked like jewelry and was designed to integrate into the wearer's real life, rather than the other way around. What a concept.

"Cathleen Osborn, 45, who has dark brown hair, picked a pair of hearing aids with a leopard-skin design. “They go with my hair — and my personality,” she said, but added that the devices were usually not noticeable. “From the day I wore them, they just completely changed my world,” she said. “I can hear people talking in the back of the car. I can even hear whispers.”

Cutting edge, functional performance AND beautiful, sensitive design, that together add up to a device that completely changed a person's world. That's what great design can do. It can help us live better, safer lives with a chronic illness through amazing engineering and technology AND it can do it elegantly, in a way that doesn't shout illness. It's great to see another industry that gets that. It's great to know that it is possible. It's very inspiring!