aiming for grace

remembering why.

 

Recently, I've been struggling with the unending nature of diabetes. Wondering about how I can stay motivated when there's no real ending to this disease in sight. Working hard and remaining vigilant means I feel better day to day and hopefully staves off worse things in the future. But the fact is, that today is now and with so much time having past, an ongoing clarity as to why I do this the way I do it can sometimes be elusive. 

When I was first diagnosed I felt terrible. I knew something was really wrong with me so the incentive to take shots and blood tests was very clear in mind. I wanted to feel better, so much so that I was more than willing to take shots and weigh my food and prick my fingers multiple times a day. And once I did these things, the results were dramatic and obvious. I started to feel better immediately. I put on much needed weight. I could make it through the night without having to pee multiple times. And thankfully the demanding thirst I'd battled for months finally subsided. I felt better and I clearly understood in a very primal way, the things I was getting for the things I was giving up.

Fast forward to today nearly 23 years later and that stark understanding isn't as obvious to me. Not because I'm any less diabetic now, but rather that this way of life has become so normal and as such, less distinctly other than before. The good news is that in being so vigilant, I'm basically pretty healthy today. In being as healthy as I am though, it's easy to forget that I'm in fact still choosing a particular approach to my diabetes. I used to say that there was no choice, that I would always choose vigilance over denial. What I'm realizing now is that by not recognizing my active choice to continue to live this way, I've lost a sense of context and put my ongoing motivation at risk in the process. By not seeing the choice I make everyday to continue to pay attention to this disease, I miss the poignancy and importance of that act. I miss the gift I give myself. At the end of the day, I deny myself a truth about diabetes, that the stakes are as high as they ever were. Ultimately though what I really miss is a truth about myself. That today, like the day this journey began, I'm choosing health over sickness, vigilance over denial and energy over infirmity, every single day. And that's really, really important to remember, especially on those days when it's hard to stay motivated!

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. 

sometimes it takes a helping hand.

 

So much of growth comes from the little things adding up to new behaviors or outcome. Last night just a moment occurred for me. Nothing huge in it's own right but on balance, a pretty big shift in the scheme of things. 

We were at my best friends house for Christmas dinner last night. A nice tradition that's developed over the years. It's been crazy snowy, icy, wintery weather here this last week, and yesterday was really the first day we'd ventured out in a serious way. We're just not equipped for this kind of weather here in the northwest, so the fact that we actually made it to my friends house at all (she lives at the top of a very steep, very high hill) was something amazing in it's own right. We were determined not to miss our annual dinner and gift exchange!

Because we've all been snowed in for days on end, my friend and her daughter had plenty of time to make plenty of cookies. Many more than the usual plates and trays full we've had in years past. When we arrived I was greeted with plate after plate of beautifully decorated, colorful, hand made cookies, brownies and lemon bars! They all looked so divine. 

We sat down to a wonderful, traditional Christmas meal soon after we arrived. It was fun and delicious as always. Lot's of laughter and holiday cheer. As the meal came to an end and we moved to the living room to open some presents, everyone stopped first to fill a plate of sweet desserts to enjoy along the way. I stood there looking at the plates of beautiful cookies and treats, locked in an internal debate. Should I take an extra shot and indulge? Though I've done this successfully before, for some unknown reason it hasn't worked well lately. A number of times this season, I've tried to cover and indulge but have failed miserably, crashing hard as my various boluses layered on top of each other. What followed were some very slow recoveries requiring lot's of eating and waiting and eating and waiting as my blood sugars slowly rose to a normal place. It's not been fun at all. Which led to the internal debate inside my head standing in front of the cookies last night. "Is the momentary deliciousness of a cookie or two worth the risk of another roller coaster ride later in the night" I asked myself over and over again. 

And then something remarkable happened. My friend, who I have increasingly shared my day to day diabetes struggles with, came up beside me. I must of have said something like "I don't know what to do" at the moment she approached, because she responded immediately with something that made all the difference. Kindly, softly, she said, "why don't I make a small plate of cookies for you and you can take it home to have tomorrow". She knew that it was easier for me to adjust to cover foods outside my usual routine in the daytime vs. the night. She also knew intuitively, that what I needed at the moment was a nudge toward the right decision. There was no judgement, no pressure to "be like everyone else" or on the other hand, to not have a treat if I really wanted one. Somehow she understood what I needed was a little encouragement to resist just then as well as the promise of a treat when it made better sense. Her kind presence, support and willingness to see my dilemma from my vantage point allowed me to regain some equilibrium and make the small yet prudent choice at that moment. My friend offered me a helping hand just when I needed it most!

This small experience reminded me that living well with this disease is not a solitary act. It's been up to me to share my journey with a few people who care to witness it with open eyes. And it's been up to those kind people to act on my behalf at the times when I get stuck or weary or disheartened. At those times when I've needed a helping hand, a quiet nudge or word of encouragement, I've been able to move forward because of their strength and support. Though most of the time I'm on my own with all the decisions and challenges diabetes presents, I'm not without support or guidance. What's surprising to me is that the more I've shared, the more people have been willing to offer a helping hand along the way.  

And that has made all the difference, one small event or moment at a time!

enough said?

 

Enough said? There it is. I wonder, have I said about everything there is to say about my experience with diabetes? Is there anything left to be said about the subject, at least by me?

Well of course there is, even if it's repeating a point that's been said before. Even if I have to say it over and over again, as long as saying it helps in some way.

I read this essay about the evolution of blogs the other day. The author was lamenting about the ever increasing monetization of blogs (among other things) and how it's changed the landscape, the charming, wacky, almost naive aspect of blogging in it's earlier days. And though I see his point and in some cases agree, in terms of this kind of blog, this place of release and exploration of an experience associated with a chronic illness, in this category of blogs, I just don't agree. 

I keep writing this blog even though I'm not sure I have anything much new to say about my experience with diabetes. I'm not writing to charm an audience or to resolve a solvable problem. Diabetes simply continues on in it's way, with the qualities and aspects that make it what it is. Over the years, by finding language to describe the nuances and tiny little details of my own experience with it, I've found a deep and persistent comfort along the way. I treat myself more gently now because of writing this blog. I feel less angry and sad because of writing this blog. I feel less isolated and alone because of this blog. 

And though I sometimes feel pressure to come up with something new and clever to say, I'm starting to understand that this really isn't the point for me. Because diabetes is a thing with edges, it has a scope that has it's limits. The point actually, is to revisit the struggles and accomplishments, edges and lessons this disease has to offer. In the process of the revisiting, strength and solace and wisdom and voice are revealed to me, over and over again. It's there that the healing and growth occur. It's there that I have come to feel better than before.

"everybody hurts"

I stumbled across this video last night. It feels like it's about diabetes to me. Of course it isn't specifically about diabetes but it certainly captures a very particular aspect of it that I've described in the past. The use of subtitles as a metaphor to capture the underlying dialogue and narrative that plays in our heads as we maneuver through our day. "Am I high, am I low, when did I last eat, how many carbs in that dish?" And here it is, so beautifully used to bring to life this sad, poignant, truthful song by an old favorite, REM. And though this particular song from them hasn't always been my favorite, after seeing this video I've come to appreciate its universal message of human struggle in a new light. In that way too, this song for me, feels like it's about diabetes. 

to go or not.

 

I just got back from a short business trip to the midwest. Only 2 nights away. 3 hour time difference though, which is always a challenge. Ah yes, traveling continues to pose some particular challenges for my diabetes control. It's as if I step into an airport and until I return, my blood sugars are out of whack, pure and simple. No matter what I try, to carry the right food with me, to stay on west coast time throughout the trip, to switch my pump to east coast time as soon as I land, at the end of the day, nothing ever really works. I'm always high on the plane no matter how much insulin I take, or how little I eat. Meal schedules are off once I get where I'm going so regardless of how vigilant I am about bolusing to cover the food I'm eating "off my schedule", it rarely actually works. And night time always poses a special set of problems because of time and meal changes. Raging highs at "bed time", do I correct or not? When I do, I often crash a few hours later, when I don't, I'm in the 300's and up at night dealing with the thirst or need to pee. Beyond jet lag, there's always a little diabetes fun to add to the fatigue of travel. Ah, it's such a bundle of fun.

And yet, at times, it's still worth it. My trip last week was one of the those times. It wasn't fun physically, but even so, it was a very positive experience. And more importantly, I come away from this particular trip with a new view about travel and trade off. Now when I'm faced with travel, I'm going to think about the potential, the opportunity for a positive experience that will outweigh the inevitable negative physical impact on me. No judgement here, no "woe is me", just put the proposition on a scale and see what comes up. Though it might not always be so hard on me physically, I'm going to assume it will be, just for arguments sake. That way I can really weigh the options. That way I can really enjoy the trips when I do choose to go, in spite of the toll they take in the immediate. That way I can feel good about the times I pass on travel, because at those times, the trade off just wasn't worth it. 

I win both ways. And that totally works for me!

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. 

feeling better.

Today's NY Times magazine featured the terrific article I'm so Totally, Digitally Close to You by Clive Thompson about how "newsfeeds, twitter and other forms of incessant online contact have created a brave new world of ambient intimacy". It feels like we've been blogging and facebooking and twittering long enough now that we're starting to see more mainstream dialog around what this behavior looks like and means to us as individuals as well as the culture at large. This excellent article explores many aspects of how this relatively new activity culturally speaking is changing peoples lives in profound and meaningful ways.

A couple of months back, Amy at Diabetes Mine kindly invited me to write a guest post about why we blog, where I spoke of the surprisingly comforting and healing aspects of the process of blogging. Mr. Thompson's article (though he's talking more specifically about micro-blogging and the like) provided a number of insights, that for me, shed some more light on why this might be so: "Many of the avid Twitterers, Flickrers and Facebook users I interviewed described an unexpected side-effect of constant self-disclosure. The act of stopping...to observe what you're feeling or thinking can become, after weeks and weeks, a sort of philosophical act.  It's like the Greek dictum to 'know thyself', or the therapeutic concept of mindfulness...Having an audience can make the self-reflection even more acute...trying to describe their activities in a way that is not only accurate but also interesting to others...(one interviewee) argues that her constant status updating has made her 'a happier person, a calmer person' because in the process of, say describing a horrid morning at work forces her to look at it objectively. 'It drags you out of your own head.'" 

I couldn't agree more. I'm the last person I'd have predicted to have their life change so dramatically for the better because of the internet and blogging, but it is most definitely the case. Indeed, I really do feel better because of this process, this connection with so many kind and supportive people as well as the wisdom, grace and courage of the community I have found. Is it also because of a new mindfulness or level of self-reflection or having an audience out there that has made this so? I don't know for sure what exactly it is, but what I am sure of is that I do feel better, and in the case of living with the unending aspects of diabetes, that's a very special and worthwhile thing!

"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.