aiming for grace

"when the body decides to stop following the rules."

When the body decides to stop following the rules is a wonderful article by loren berlin from the new york times. Though not specifically about diabetes, this beautifully written story of the author's own struggle with ulcerative colitis touches on some universal themes around chronic illness. "Before my illness...if I followed certain rules, I would get the desired outcome." Ah yes, I vaguely remember what that feels like. "...Generally, if I made the investment, I got the return." Yep, a familiar concept too. One of the hardest parts about diabetes for me is that all the hard work, all the attention to detail never adds up to a cure, an accomplished ending. At best, it staves off disaster in the future which, don't get me wrong, is a good thing, a very worthy thing indeed. But still in the immediate moment, the everyday experience of chronic illness, the actions I take sometimes work and sometimes they don't. With chronic illness, the "body decides to stop following the rules". Action does not always deliver the desired results.

"...Incurable illness doesn't operate that way. Dealing with it is not about studying harder or developing a regimented routine. Nor is it about karma, becoming a better person or learning to like leafy greens...It's hard. Not only am I adjusting to a chronic illness, but I'm also accepting that I am vulnerable to countless things beyond my control, that great haze that is the unknown."

I so appreciate hearing such profound clarity from someone else, so succinctly put, with such wisdom and grace. I also appreciate the overarching hopefulness of this essay, that in spite of all the struggle and unknowns ahead, this author chooses hope to focus on. "Dealt a bad hand at age 29, I decided my only option was hope." It's good to be reminded of this choice. It's good to learn from others journey's. I am grateful for their insights and the generosity of their sharing. I feel better because of it.

diabetes alltop

I was recently contacted by the nice people from the amazing information aggregation site alltop, informing me that aiming for grace has been included on their diabetes page. Alltop is a terrific resource that pulls together links to all the "top" online websites, media sources, magazines, newspapers, blogs and forums around a particular subject and then features them in one, easily navigatable place. I've used the site many times before for other research I've been doing and have loved it's ease and comprehensive scope. It's very cool to be included on such a wonderful site, but more than that, I'm thrilled to be is such good company there. Many friends and fellow bloggers are also featured prominently on the site, along with lot's of other great resources about diabetes. alltop is most definitely worthy of bookmark as an excellent source for comprehensive information, the latest diabetes news, updates on your favorite blogs as well as possibly a few new connections you might not have known about before! Coolness abounds!

more gentleness.

 

I been thinking about gentleness lately. Gentle isn't the first place I go when dealing with my diabetes that's for sure. For so long I've felt hindered by the regimen of my life with this disease, annoyed by the many tasks it imposes and all the little details I have to attend to because of it. I've lived with a low grade feeling of irritation in my life because of all the little physical intrusions and the unending nature of diabetes. 

Well just recently it's started to occur to me that a lot of that irritation I feel has actually been directed at myself. I've internalized the feeling to such a degree that in a very real way, I blame myself for having got this disease and worse yet, for having to live with all the annoyances and worry and discomfort that it brings. Only now am I beginning to really see how much I blame myself for having diabetes.

This is strange to me. And sad. It doesn't make sense and yet, there it is. I've been kicking myself in ass about this disease in one way or another for the last 22 years. Amazing!

Which brings me to the subject of gentleness. I've written about it a couple of times in the past, but given how many posts I have written overall, it's most certainly not a theme I've consistently explored. For some reason now though, slowly, slowly, gentleness, as a concept, as a healing tool, as a practice, is coming to mean a lot more to my picture and experience of living with diabetes. It's only a formulating idea at this point. I honestly don't exactly know what "more gentleness" looks like yet, but I plan to actively pursue it going forward. Does it mean something as simple as more massages in my life, or maybe a day off here and there for no particular reason? Or maybe it's just permission to linger a little longer when I'm doing something that's enjoyable, like reading one more chapter of a great book rather than doing that "pressing" chore, this very minute. Or maybe it's just sitting in the sun and just being still for a while. Still, open minded, quiet. I really don't know yet, but I do plan to start finding out more consciously what more gentleness looks and feels like for me. I've learned how to take shots and blood tests and carb count and wear the pump so it seems like learning how to be more gentle to myself is a skill development I can tackle. Given all that I know how to do for the technical maintenance of my disease, it seems high time to get better at the care and feeding of my heart and soul in the process. And learning how to be more gentle to myself seems like a excellent place to start!

there is much to be grateful for.

It's been a couple of weeks since I've posted here. I keep asking myself if there's something I want to write about vis-a-vis diabetes and the answer keeps coming up no. Not no emphatically or full of emotion. Just a quiet no, like there's nothing much to say about it right now. Which a good thing quite frankly, because it represents a new level of acceptance and equilibrium around the subject of this disease in my life. Diabetes still rocks and rolls, it still messes with my plans and my day but for some reason that fact doesn't seem to upset me quite so much lately. And I think that is, in great part, because of being able to write this blog to a caring audience and in return, receive such kindness and support from so many people out there. This blog started out as a voice in the dark and what I've found over the past few years is a place of great warmth and lightness and comfort. Which I carry with me everyday, which means I'm less frantic about it all for longer periods of time. It's not to say that I want to stop writing this blog or that I won't need to use it to rant or grieve again, but for now, for this period I feel a new level of peace I've never experienced before. Peace, acceptance and though I'm still sad about all diabetes means and brings to my life, it seems to weigh a little less heavily on my soul these days. Which is, quite simply, a great relief.  

And for that, this quiet, lighter period, I am forever grateful to everyone who has read this blog and commented and sent strength and validation and kind wishes when I've needed them the most. Oh yes, there is much to be grateful for!

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?

nutrition data.

I'm totally intrigued with the amazing site nutrition data. Though it's actually pretty complex in it's breadth and depth, it's goal is to make the science of food more understandable and usable through simple presentation and information graphics. The content on the site requires some time to investigate but the result is hopefully a deeper understanding of what foods do, the value they bring individually and how in the end, they interact together for overall nutritional impact. There are many tools to play with here, to help understand the nutritional value, glycemic index rank, even the "fullness factor" of a particular food as well as to tailor recipes and food combinations to help a person meet their individual dietary goals. They also have a section for diabetes which tells me at first glance that they understand some of the complexity we face in terms nutrition. It's going to be fun to explore this impressive site and see where it takes me. No doubt I'll learn something useful along the way!

asking for what you need.

I heard a woman speak recently about the need to ask for what you want, to ask for the kind of recognition and feedback you need from the people who matter to you. It wasn't a long speech, 3 minutes perhaps, but it really struck me deeply nonetheless. Her point was that it's our responsibility on some level, to bring visibility to the things we need, to ourselves and others. Though people might not always respond to us in the way we want, the most important thing is that we've made our needs known to ourselves, out loud, in the light of day. I like that. I think it makes sense.

So in that spirit, I approached my 22nd anniversary of my diagnosis a little differently this time. Normally I don't tell anyone about it. My husband knows and now, thanks to this blog, I can tell my friends in the diabetes OC and they too understand how significant that is. That is normally enough. And quite frankly, the subject is an awkward one with anyone beyond this forum. I've never exactly known how to say to my friends or family that "today is the anniversary of getting diagnosed with a difficult disease". I imagined that they wouldn't know what to say and everyone would just feel more awkward around an already difficult subject and given the significance of the day, who needs that?

But as I say, I decided to try something different this time, thanks to that little 3 minute talk I heard the other day. I decided to let my brother know the importance of the day even though he's never really engaged with me much around my disease. My brother and I haven't always been super close though he's really important to me and I know we love each other a lot just the same. I was 27 when I was diagnosed and had already lived separately from him for many years. In a weird way he, like the rest of my family really, understands intellectually that I have diabetes, but practically speaking has no idea what that really means. He's never seen me struggle with low blood sugars or curse the inevitable highs. He's never watched me take a blood test thousands of times over or insert a new pump site, or rip one out either. No, my brother really has no reference point as to what the last 22 years have really been about.

My brother lives in another city so I emailed him last Thursday about something else we'd been discussing and then at the end of the note, simply mentioned that today was my 22nd anniversary of my diagnosis of diabetes. I said I was proud of how I'd handled it but sad about the experience too. That was it. I pushed the send button and went off to a day full of meetings. When I returned to my desk around 4:00, to my surprise, a gorgeous bouquet of multi-colored tulips was there to greet me. My brother, who has never been good at remembering birthday's or anniversaries, my brother, who is not demonstrative in that way, did the absolute, perfect thing. He noticed and acted. Because I'd opened up the possibility for him to do so, he did so. Because I let him in on my world, he had the chance to be kind and supportive back. He didn't have to know the details, he just had to know what was important to me.

On the card that accompanied the bouquet there was a note from him saying how proud he was of me for doing so well with this difficult disease. To say that I cried is an understatement. The fact that he understood this and that he felt pride in my approach, meant so much to me. I know it sounds silly, but I really didn't know that he felt that way. We haven't talked about my diabetes much in the past so to find this out, to see it in words and gesture, really made my heart skip. One small act of sharing, allowed for another act that not only made my day better, but also taught me something important about my brother. Even though he hasn't been a part of my day to day struggle, he has noticed in his way. I guess the world isn't always how it appears at first glance. I guess it's worth asking for what you need every once in a while. In this case, it most certainly was!

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.

picturing feelings helps.

So much of being understood and heard is determined by how an idea is presented. "Know your audience" is one of the first rules of good presentation. With that idea in mind, I drew this silly chart as a way I might communicate to my doctor or nurse about how I was feeling about my diabetes. There are so many factors that go into the answer to that question that it's hard to explain succinctly and with clarity at a short doctors appointment or phone call. When I see my doctor we have only so much time to talk. We review my latest A1C, discuss lows and highs, check my feet, you know, the usual stuff. If we have any time left after going over all my numbers, my doctor will sometimes ask how I'm feeling about my diabetes overall. But because it's at the end of our visit, there's never much time to go into any depth to really answer his question. I usually say something like "I'm ok" or "this is frustrating but I can handle it", and then we're done and out I go back into the world.

But I know from personal experience how much mood, attitude and feelings play in my approach to my diabetes management. Feelings have real impact yet they're not quantifiable or precise or particular like a reading from a blood test or an A1C. So much of my approach around diabetes is about balancing, about landing somewhere on a scale between 2 places, 2 opposites, 2 variables. This drawing was a beginning attempt to capture how that might look in a picture rather than as a vague idea. If understanding has to do with presentation, would my audience, those amazing medical, clinical, data focused partners in my care, consider my feelings and attitude as a part of my overall control assessment differently if I shared it with them this way? Since my attitude and mood has such direct impact on my diabetes control, why shouldn't it be expressed in a language and format that makes sense to the medical world I have to interact with? And most importantly, would this added clarity around such a key factor in care mean that we would both have more information to act on? I think it'd be interesting to bring something like this to my next doctor's visit. I like the idea of interjecting feeling and attitude into the management equation to broaden the conversation beyond the usual clinical, numerical data points. At the end of the day, feedback, context, information, clarity and understanding can only help. And a little more help is always good.

bring it on.

We're having our usual tease of spring here in the Northwest. It seems to happen every February. Cold mornings, followed by glorious sunny afternoons in the 50's and 60's. It will pass soon enough and we'll be back to the low, grey cloud cover and incessant drizzling we know so well. But for now it's amazing.

It was like that yesterday most of the day, with blasts of sunshine breaking through soft, diffused clouds on and off. It was a day for gardening, cleaning out overgrown beds, pruning of roses and soil amendment. It's been a long time since I've worked so hard physically and I'm feeling it this morning. Even my hands hurt. But oh, not my spirit. Everything feels right in the world when it's sunny and I've spent a day in the fresh air with birds singing and the earliest signs of spring in the garden. It doesn't matter that my blood sugar is dropping. It doesn't matter that I'm out of practice in adjusting for this kind of activity very accurately. It just doesn't matter that much.

Of course, it does matter and of course I will figure it out, all over again. But it takes time because this kind of exercise changes everything, my metabolism, my insulin needs, my energy level. After a couple of days of this kind of work, my overall insulin needs will change too. I'll need less this week than last week to maintain my overall control. But I'm not sure how much I'll actually need to do that, so it's more blood tests and more attention to what's going on. I'm eating more protein in the morning and even a bit more fat so I can augment all the exercises's impact on my blood sugar. But I don't care about that because I'm having so much fun digging in the dirt that I'll do anything to be able to keep doing that very thing. I'm up for the trade off because the pay off is so high. So bring on the blood tests and adjustments I say! Bring it all on because there are roses to be pruned and sunshine to be soaked up. Ha!