aiming for grace

h.n.y.

Happy, healthful, peaceful, hopeful new year to you all! Here's to a fresh, new year full of connection and support! It's a wonderful thing to know I'm not alone in this strange journey. Thank you for that! Happy wishes to you all. See you next year!

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.

design really does matter.

A friend of mine tore out this article from the magazine business week for me the other day. First of all, how nice of her to think to do so, though I'm sure that, in part, it's because she's sick of me yammering on about how annoyed I am with the design (or lack thereof) of my pump. I'm not exactly a shrinking violet on that subject as you all know.

But whatever the reason, I was very grateful to her and immediately started to read it with both hope and trepidation. The title alone was pretty intriguing: my ipod, my cell, my insulin pump. Sounds familiar, right Amy? The second line of the title also showed promise: medical device makers are taking cues from user-friendly tech gadgets. Ok, ok, so were they about to reveal some new breakthrough in pump design that I hadn't heard of yet I wondered? I scanned the page as fast as my eyes could read. But unfortunately, it turned out that the answer was a most definite no. No breakthroughs, no revelations, just the same old posture that pumps are amazing technical feats (which they are) and there is new grooviness on the horizon with the advent CGM technology (check). It was more of an outsiders look at the stuff we all live with everyday. Cool that it was being written about, but sadly, nothing new for me.

I read on. The next paragraph talked about "the new role of design" in the medical products world. That sounded intriguing to me. They framed up how medical device companies are teaming up with industrial designers and seeking inspiration from consumer products to make their products more appealing to us. Hm. I wonder when exactly that teaming up is happening. In a nutshell the article posited that medical devise companies are now aware that with better design, people will be more likely to manage their disease effectively as well as prompt more customer loyalty to their brands. Yep, makes sense to me. Which led to a favorite quote in the article stating that design had "become a 'primary focus,' says Dr. Alan Marcus, global director of medical affairs at Medtronic. 'We're actively moving in that direction.'" Actively moving in that direction. What exactly does that mean? According to my pump rep, it doesn't mean anything aesthetically at least, given the fact that, according to him, any change, functionally or aesthetically means having to go through the FDA approval process again. Which means there isn't a whole lot of incentive for a pump company with an existing design to redesign for aesthetics or user interface any time soon.

But what I found most interesting about the article wasn't the rehash of stuff we already know as people living with these gadgets day in and day out. What was interesting to me was that there were some research data that spoke to the role of good design and medical compliance and behavior in a quantitative, statistical way. Design is so often dismissed as extra, "nice to have" component rather than a critical, integral part of making a functional and effective product or tool. The study this article references at least broaches that misconception. "Recent research bears out Baldwin's assertion that design can influence how a patient deals with his disease. At a meeting of the European Association for the Study of Diabetes in Amsterdam, Italian researchers said they looked at quality-of-life issues for 1,341 patients with type 1 diabetes. They found people who used pumps such as the PRT System experienced 70% less therapy-related dissatisfaction than those who repeatedly inject themselves." Ok, so they're comparing pump therapy to shot therapy but still, it's a start. There is a correlation between design and behavior which is totally cool. It's saying that the technology and quality one uses to manage this disease impacts the experience, approach and behavior in living with it. It isn't a huge leap to imagine that if it was a matter of choosing between a beautifully designed, elegant, object of desire, well engineered pump and a clunky, brick-like, 1970's-esq pager style, well engineered pump we'd be looking at a very different business landscape on our hands. I'd of course, never trade off on trustworthy function, but assuming that's a given (which I think is fair at this point), I know which pump I'd choose.

Anyway, off I climb from my design soapbox yet again. In the end, it's great to see an article like this in a major magazine. A magazine, by the way, that's talking about diabetes from a business angle, rather than a medical one. A magazine that is acknowledging the business advantages that great design creates. A magazine that frames us up as consumers with the ability and desire to choose products that best address our needs rather than sad patients who get what they're given. I like that. I like that a lot.

a seasonal note:

Merry, joyful, peaceful, healthful, happy to all!

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.

noticing the small things.

I was typing the other day and I noticed how clicky my fingers sounded against the keys. It was the callouses that have come from the thousands of blood tests I've taken. Click, click on the keys. My fingers don't hurt as much as they used to, and I imagine that the nerves at their tips have long since given up the ghost. It used to be that doing even the simplest task would hurt, picking up an envelope or driving a car, anything that would bump the edges of my fingers. It was the quick movements, the stuff that you are never conscious of because you're just moving through your day. But now that pain is gone. It's much rarer for me to feel much of anything in my finger tips now, thanks to the callouses and the death of those nerves. Now it's just the callouses I notice.

Click, click.

Isn't it amazing what we get used to? Isn't it amazing how strange this disease is? I see the big impacts of diabetes everyday. The constant monitoring, the unending adjustments, the persistent dialogue and decision making that goes on in my head every day like a subtitle in a foreign film. I can tell you in a minute how diabetes has changed my philosophical outlook, the many struggles it's presented and even some of the good it's brought to my life. You know, big stuff. But I realize that I'm a bit slower at noticing the smaller stuff. The details. Like the fact that my sheets are sometimes dotted with tiny blood stains from blood tests taken in the middle of the night. Or that I seem to find random test strips everywhere, like a persistent clue in some strange and personal mystery. Or the fact that my fingers click as I'm typing. Little stuff. Strange stuff. The texture and details of living with diabetes.

Yes, it's easy to see the big things about diabetes. But there are small ones too. I think it's important to notice them both.

Click, click, click.

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.

a grinch moment.

Pardon me, but I need to indulge in a little grinchy griping for just a moment.

I'm kind of hating the fact that the impending holidays are all about sweets and food and sugary excess. I get the traditions and the cultural reasons why we stack plates high with sugar and candy and treats. I understand the "why" of all the food. I also understand the temptation to test what I know will happen if I "taste" a few too many of those treats at every turn, at every social occasion. I get what's going on because I've been here 21 times before. I also know I'll get through, that blissfully the platters of temptation will disappear soon enough, and it'll be that much easier to stick to what I know works for me. But today, on December 3rd, I realize that I'm feeling a low grade tension and resentment and grinchiness about the weeks of treats and temptation ahead. For now, I'm bummed that I need to sit myself down and talk through what's ahead and how I need to avoid the temptation that leads to the inevitable rollercoaster ride I know so well. For now, I'm wishing it was January 3rd and all this sugary, holiday sweetness was behind me.

I'm sure I'll feel better tomorrow. In the meantime, thanks for the grinchy indulgence! (example of lovely sugary temptation via sweet paul)