aiming for grace

merit badges earned.

 

Recognize Victories. Consider Lightness. Celebrate Courage. Embrace Kindness. Aim for Grace. 

For quite a long time I've been thinking about how I'd like to have a way to acknowledge all the small milestones of living with this disease. Little markers, badges if you will, that are earned every day, every hour, every minute, by countless people living with chronic illness. Merit badges to acknowledge all the grace in light of struggle, the courage in light of unending challenge, the everyday victories people with chronic illness have every day. The older I get the more I'm convinced of the importance of celebrating and marking them in some small way. Because of my love for all things girl scout, what came to mind was a token, a kind of merit badge for all the small milestones we achieve. I thought about how great it would be to give a physical acknowledgment to someone when they needed a little boost or vote of confidence. A nudge to say yes, I see what you face and I think you've earned some recognition, you are a hero in my eyes. And then I thought about how nice it would be to receive something like this from someone else. Moments marked by love and of bearing witness, of being seen. Moments where the tiny milestones are acknowledged.

At first I thought I'd have them embroidered so that a person could sew them inside their coat jackets or purses to remind themselves quietly of their own courage and grace. But then I thought it might actually be better to wear them with pride, for all the world to see. My thought was that in sharing them outwardly, not only do we acknowledge to the world (and ourselves) what we've accomplished, we also invite others to consider these ideas in the broader sense. Consider Lightness. Celebrate Courage. Embrace Kindness. It occurred to me that the world might actually be a better place if everyone recognized their own everyday victories, as well as those of others, just a little bit more. Aim for Grace.

So I got myself a badge machine and made some merit badges for fun. It's helped to take words and concepts and make them tangible and real. To see and touch the ideas change them somehow. For me and for others. A case in point happened the other day after my not so happy doctor's appointment. I was feeling down and beating myself up a bit and my husband looked at me with love in his eyes and simply said, "recognize the victories". It made me pause. It stopped me from beating myself up further. The words felt more real somehow. Was it because I could actually hold the idea in my hands? 

Regardless, that's what I wish for us all. I send out these ideas out to you, because everyday we deserve recognition for what we've earned in doing what we do. With courage and grace. With kindness and lightness. Because everyday there are victories to be noticed and celebrated, every single day, for all of those who just deal. For everyone who just keeps at it. For all the people who keep showing up in spite of and because of diabetes. 

looking on the bright side.

 

It's the New Year and a time for reflection and promise. I've been trying to think about my diabetes differently lately. Less of a place of sorrow and regret and more of a source of creativity and possibility. More of a reason to have the best life I can. It occurred to me a few months ago to try an experiment. I asked myself, "what would it look like if I flipped the premise I've been living with to see what diabetes is giving to me as compared to what it takes from me?" 

Wow, now that's a question! Now let me just clarify for a minute. I'm not going all pollyanna on you here. I'm not saying it doesn't take, but rather that it is undeniably here in my life so the question becomes, how can I use that fact to make my life better? 

Let me give an example. Travel remains a source of real challenge for me. I can do it if necessary or the pay back is well worth the inevitable diabetes struggle I must endure in the process. Check, I get that. I also hang with a crowd who loves to travel, seeing it as the modern form of adventure and a huge source of creative energy and insight. It's what they strive for and it's what they talk about a lot. Where they've been and what they've seen in their travels is the currency of their lives. Which means I'm left feeling like my life is somehow less than everyone else's because though I'd love to travel, I don't do so that much because it exacts such a profound toll on me on physically. I'm left feeling like I'm not as creative or hip or contemporary because I find not traveling is so much better for my health.

So a few months ago I decided to look at my travel situation in a different light by asking myself a few questions. What does staying local over long periods of time offer up as an advantage to me? What can I use the time, money and energy I'd spend on going elsewhere to enrich and develop my day to day life here? Who are some other people in the world (and throughout history for that matter) who've lived rich and creative lives while staying close to home that I can look to for inspiration? 

Once I started to consider my situation from this vantage point the tone of the conversation in my head totally shifted. Honestly. It seems so simple but it's taken a long time to get here. Suddenly, I began to see my day to day life in a very different way. For example, instead of continuing the ongoing debate I've had in my head for years about whether I should build an art studio in my basement this year for Christmas, I asked my husband to build me the tools I needed to start screen printing at home. 4 weeks later, I have a screen printing studio where there was nothing before. This year, during the raging winter storm we had over the holidays, I began learning a new art adventure right in the confines of my own home. It proved to be an adventure as rich and creative and exciting as going to a new place, all without the blood sugar roller coaster or the jet lat. It was really amazing!

What a revelation! And what good fodder for a few diabetes focused New Years resolutions to expand into the coming year. I've never done resolutions specific to diabetes before but given the power and results of this experience, I think I'll give it a try this year. So here goes 2009, let's make it a great year regardless and because of diabetes in my life.  

I will have more diabetes friendly adventures close to home.

I will be more gentle on myself because I have diabetes. I will let that fact count for something.

I will accept that diabetes is an undeniable part of my life and as such, will find the advantages it offers.

I will bring more creativity, fun and positive influences into my life because of the presence of diabetes.

Though I know I won't always succeed, I'm going to try more to look on the bright side of this journey.

Happy New Year everyone! May your year be full of comfort, health and happiness!  XO Birdie

small adventures, close to home.

 

My friend and I visited this place last weekend. A half an hour away, fields of dahlias, row after row, like a huge striped painting made of flowers. Eye popping beauty on a gorgeous early fall day. It's been warm again, as it often is in the northwest at this time of the year. And with the warmth comes late summer flowers like these, big and small, variegated and solid, simple and frilly. The variety and bawdiness of it all literally took our breath away. It was a wonderful small adventure.

I've been wrestling with the realities of my life with diabetes, wrestling with it for most of the time I've had it. Trading off between what I'd like to do and what happens when I actually do it. I've landed on both sides of the equation, sometimes not caring about the ramifications of that cupcake or extra long walk, and then other times opting to not indulge because the costs are just too great. This ongoing debate is just a part of my life with diabetes.

One of the biggest struggles I've had in the realm of these trade offs has been around travel. It always takes a toll, no matter how careful I am. Always. But I do it nonetheless, usually because I have to for my work. It's do-able of course, and I have a good time in spite of the inevitable blood sugar ride that ensues. But when I do have a choice, I find that I am choosing not to travel when I can. I'm sick of the work it requires and the physical challenges it always poses, the extra highs and lows all take some of the bloom off the travel rose. I've struggled with the desire to see the world more and the particular cost diabetes adds to the process of actually doing so. I've worried that I'm "wimping out", that I'm letting diabetes limit me, that I'm missing out on a full life. And yet, more and more I find that I just want to minimize the discomforts of diabetes as much as I possibly can. I'm tired of the roller coaster, pure and simple. And though I still have it in my day to day life, I have it less so when I stay closer to home. That's just a fact. As much as I'd like it to be different, that's the way it is.

Recently, something occurred to me that's turned out to be very helpful. I realized that travel is just one way to have a full, intriguing, magical, rich life. Plenty of the greatest thinkers and artists that I admire, didn't have to go far afield to experience a meaningful, adventurous life. Close can bring expansion. Near can bring adventure. Small can bring liberation. And in my case, safe can bring joy and energy, balance and happiness. 

Yes, my friends and culture think travel is the end all and be all. The magazines I read celebrate all the exotic corners of the world. The question everyone asks after a week off is "where did you go"? Yes, my friends dream and plan and visit places far and wide. But, it's all relative. It's very personal. And at the end of the day, it's up to me to decide what works best for me with diabetes!

So I'm trying to feel better about all this. I'm trying to look at the rich world just outside my door. Last week I went here and here and here. And later this week, I'm going here and here. Lot's of small adventures, close to home, but as so full of the opportunity to "travel" far and wide.

diabetes marriage.

 

I love my husband very much. Not only is he a terrific person who's company I never cease enjoying, he's also been an amazing partner to me when it comes to my life with diabetes. Supportive, understanding, he's always seemed to strike the perfect balance between actively participating in my care while at the same time respecting the fact that I will ultimately make the decisions about my disease. I feel incredibly lucky to have him in my life. 

Which isn't to say that we don't struggle with the presence of diabetes in our lives at times. At the end of the day, we each are very differently impacted by the disease and not surprisingly those differences can cause friction and misunderstanding.  As in any marriage, there are particular assumptions on the part of each partner about the meaning and responsibility the intimacy of marriage brings. And lot's of trade-offs and bargains and compromises. It's part of what it takes to build a rich life together with our life partners. And in that process, we get to love and support of someone we deeply admire, the joy of companionship and deep intimacy over our lifetime, and the thrill and meaning of a life witnessed and shared. It's all so very worth it. 

And diabetes adds yet another particular layer to marriage and partnership. As the person with the disease, I experience it physically and emotionally. I deal with it's ramifications constantly and I'm tired and frustrated because of it. My husband on the other hand, has to live with the challenge of watching the his wife struggle and deal with something that will never go away. He can help to a point and then is left to observe from the outside, supporting where he can yet unable to ever truly save me from the reality of diabetes. Each of us experience diabetes differently and each of us have to cope with our experiences, sometimes together, but often alone too because of the nature of our particular vantage points to it. We both share diabetes but in such profoundly different ways. Which is reality. And sometimes, it's difficult.

The complexity that diabetes brings to all relationships is unquestionable. That it brings it to our marriages and partnerships poses deeper challenges. The guilt I feel for example, for burdening my husband with my limitations, my fatigue after a night of lows, my frustration with the world after a week of highs. None of that is his fault yet I'd be lying if I said that it doesn't slop over onto him at times. 

Or the guilt he feels when he sets off on his hiking or scuba diving adventures, happy and excited for the fun that lays ahead, but sad too that those very adventures sound like anything but to me. Sad that for me they pose more work and figuring out and planning, and that in the end, it's just more appealing to let him go off with his pals alone. It's not that this doesn't happen with couples without diabetes, but in our case at least, diabetes is the main reason we don't even try anymore. I would imagine too that he looks forward to a vacation from diabetes too, a series of days of eating when the mood takes him, of exercising until he wants to stop, not because he has to. I'm sure that makes him feel a bit guilty too.

Which is just one example of how we get entangled because of diabetes. Guilt or envy, resentment or grief. Diabetes can stir all these negative emotions up, even with the most well-adjusted, realistic and loving of couples. At the end of the day, we've found that talking about these emotions has helped us. And I deeply appreciate the fact that we can talk about them, as well as all the issues that diabetes poses. I feel validated and seen in my own singular journey with chronic illness and I feel good that I can hear and support him in his journey with it too. The talking and listening has turned diabetes into something that's brought us closer together rather than driven us apart. For that I am most grateful to my husband. Because of him and his willingness to stand beside me with my disease, to see it with eyes wide open and feel it with an open heart, we have been able to turn one possible negative of this disease into a real positive. That fact alone means more to me than words can say. Because any gift from diabetes (which takes so much) is amazing in its own right, but this one particularly, this deeper intimacy and partnership with my husband, well this one is the most special one of all. 

taking that extra hour.

 

Diabetes is a series of discomforts.  At it's best, it's forgotten for chunks of time.  The longer the better.  I've spent my many years with diabetes trying to minimize the discomforts and maximize the times when they recede.  For the longest time, most of my time with diabetes as a matter of fact, I didn't realize this was how I was living, but now I see it.  And though it's sad at it's core, the reality of it has become normal for me.  

Well a funny thing has happened to me lately.  For some reason I've been having these moments of clarity that strip the emotion from the situation and leave in it's place, an insight that I can use in making the reality of my life with diabetes better.  Like the realization about the discomforts of diabetes and the time in between.  Before it was just how I went about my life, sad or angry or tired in the uncomfortable times and blissfully unaware during the times in between.  But now that I see this pattern I realize that there's some very intersting and profound truths about it.  One's that I can use in making things better for my life overall.  Minimize the discomfort, maximize the pleasure.  I'm beginning to see that I can embrace that already existing pattern and actually mindfully pursue it, rather than just exist within it.  What I see is that in seeing the pattern, I have more ability to amplify the process.  I can actally actively minimize the discomfort, maximize the pleasure.

This insight is changing how I'm looking at my life these days.  Before I might have thought this was a selfish way to live but from where I sit with the reality of the inevitable discomforts and struggles diabetes will present, I'm getting more aggressive about seeking the pleasure in my life.  I find that I am asking myself more about what will give me pleasure in this day, this project, this weekend. Of course, I can't avoid all frustrations and struggles that are a part of everyday life but I can have some more say over many of my choices.  And where I can have say, I'm finding that I'm at least stopping for a moment and considering the options in a way I've never done before.  Minimize the discomfort, maximize the pleasure or comfort or fun.

Which translates into lot's of little decisions and many new yesses and no's where before the opposite would happen.  Yes on the 100% cotton sheets, no on that 2nd episode of law and order.  No on reading that horrifying story about something I can do nothing about and yes on that 2nd walk with the dogs.  Little stuff that amplifies the happy times, the soul feeding adventures, the moments of pure joy.  I'm starting to see the day full of choices and though I can never totally get away from the inevitable struggles and physical challenges diabetes presents, I'm finding that this way of looking at my life helps minimize the toll those difficult times take on me.  Overall, I can feel a new gentleness towards myself that lightens the sting of diabetes.  

A friend recently said to me after I'd shared I'd had a bad night with low bloodsugar, why didn't I just sleep an extra an hour.  And she was right.  Why not?  Maximize the pleasure, minimize the discomfort.  

PS. sorry about no photo on this post but typepad has "upgraded" the compose function on their system and for some unknown reason it's not letting me upload images on my G4 ibook, which I use when I'm traveling as I am right now.  Argh!  I'll post the image when I get home in a few days.  Sorry. 

Postscript: I'm home.  Bigger computer, uploaded the photograph.  Enjoy!

opportunity?

I've been thinking about what aimee mullins said about the opportunities her disabilities have presented her. On one level I recoil at the idea of seeing disability or chronic illness this way, fearing that the tired, "be positive", new age-y proselytising is just around the corner. But I don't honestly think she was just saying "look on the bright side" here either. Hm. Opportunity. At the end of the day, that hasn't been a concept I've every really considered in terms of my diabetes. Coping, trying to feel whole, aiming for grace, yes. Opportunity, not so much.

The other day, at a quiet moment, a very clear and simple question just popped into my head. If I were to consider the idea of opportunity in this experience of chronic illness and diabetes, what would that look like and mean? What is the opportunity, if any, does my diabetes offer me? The question just hung there in the air, quietly, lightly, without any judgement. It was a bit profound actually, to hold up this experience I've had, that I'm having at this very moment and turn it around to look at it from a completely different vantage point. What is the opportunity my diabetes offers me? I'd never asked myself that question. Never.

What happened next was surprising. Again, quietly, as if suspended in air, a tentative answer presented itself. If I look at my diabetes and all the hoopla and time I have to devote and details I have to focus on as my true reality, what comes up is this. Diabetes offers me the opportunity to gently, justifiably, kindly tend to my health. It offers me the chance to truly and deeply care for myself. It offers me a life path of nurturing and care, not unlike a gardener tending to their garden or a parent nurturing their beloved child. Diabetes offers me the chance to pay attention to my body, my health and ultimately, to life itself.

That's the answer that presented itself when I asked the question. There it was.

Now I'm not saying that this idea negates all the other things I feel about diabetes, the loss, the burden, the weariness. But it's interesting to add to the "hand of diabetes truths" the idea of embracing the opportunity it presents. I'm not sure I totally buy this yet but I'm certainly open to considering it. Up until now I've only seen diabetes as a thing that gets in the way of living a full life rather than a chance to profoundly celebrate living. At the very least, it's an interesting idea to hold in my heart for a while. And hey, if it brings me some peace and comfort in the process, it's certainly worth the consideration.

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!

hvd.

Happy Valentines Day everyone. I hope your day is full of love and warmth and comfort.

Lovely photo from forty sixth at grace.

sunshine on a grey day.

Thank goodness for the coming of spring and bouquets of daffodils in the meantime. Things are better now, the clouds are a little higher, there are a few more sun breaks and heh, life is basically good. Thanks to everyone for their kind words and reliable support. You are sunshine and warmth on the grey days. I am full up with appreciation.

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!