aiming for grace

hoping just a little bit more.

 

I've been thinking about hope lately.

For obvious reasons, given the recent election of Barack Obama as our next President, as well as other reasons related to diabetes too. But I'll get to those in a moment. I have to say first, that when Mr. Obama's campaign began, I was quite surprised by his choice of the word hope for the focus of his messaging. Don't get me wrong, I loved it, but I admit that I was also worried that it'd be perceived as soft or naive in such tough and cynical times. Hope. Really? 

And then something happened. The word and idea caught people's attention and spoke to their hearts. It's almost as if people said, why not hope? Audacious, yes. Or maybe just amazingly insightful. People have always wanted and needed hope. And for so many reasons, this particular call for it, at this particular time, inspired so many of us to believe that a true change was possible. Hope was exactly the point. And ultimately, hope (and a ton of hard work and effort) lead to a profound, new reality.

My best friend called me the other night, all excited about a news segment she'd just seen on msnbc about some exciting research for type1 diabetes. The piece used words like "promising breakthrough" and "possible cure", interspersed of course with lot's of disclaimers and caveats. I tried to share in her excitement but found myself tempering my enthusiasm in spite of myself. Given the reality of how many times I've seen and heard this kind of thing before, I've learned to keep any real hope about at cure at arms length. Though I found myself saying yes, yes, it does sound promising, inside I was thinking, "Well maybe. I'll believe it when I see it."

The truth of the matter is that I've pretty much given up hoping for a cure for diabetes. It doesn't really help me with the day to day of dealing with the disease. Diabetes is here and boy is it real. Hoping for a future without it has always felt somewhat futile and disappointing. It's been a nice thought that's never come to be.  

And then I got to thinking about this election. In this case, hope turned led to the reality of change. Though I know that politics are one thing and science another, hope, and the unrelenting belief in progress that it embodies is the same. Hope endures. Hope inspires. And at the end of the day hope can be the fuel for profound change.

So with that in mind, I watched the clip my friend had mentioned another time. And though I'm still not getting my hopes up too high, I find myself feeling a little more hopeful. Even though it might not be this particular research that gets us to a cure, maybe it will be the next one. Maybe it will be one that comes from research now that we have a new President who actually believes in the promise of stem cell research as a possible cure to diabetes and will likely use his executive powers to reverse the former administrations ban soon after he takes office. In 2007 Mr. Obama said, "I am frustrated...that we are preventing the advancement of important science that could potentially impact millions of suffering Americans...My hope, and the hope of so many in this country, is to provide our researchers with the means to explore the uses of embryonic stem cells so that we can begin to turn the tide on the devastating diseases affecting our nation and our world." 

Hope. There it is again, the word and idea. There it is again.

yes and yes.

 

In the past couple of days I've seen 2 videos about young people with type 1 diabetes, the first on my local news station and the second at the new york times video health section. I was struck by a couple of things about this. The first of course, is that they were out there at all. Not one but two! Both videos were well done and both framed the rigors and challenges of living with type 1 diabetes pretty well. After all there's only so much you can get after in 3 minutes. They accurately captured the rigors of the pump and blood tests and taking shots and carb counting, as well as the challenges of being newly diagnosed as a young person. I was surprised how good it felt to see it all so openly discussed and pictured, highlighting what it takes to live with diabetes and in the process making it a little less secret or hidden away from everyday view. The fact that these stories had been made in the first place and made relatively well to boot was a really very good thing.

The second thing that came to mind as I watched these 2 pieces was the overall tone and point of view of the stories. Both were about newly diagnosed teens adjusting to the profound changes diabetes had brought to their lives. Both also spoke of the fact that their new regimens were becoming "normal" to these young people and their families. Of course there were the cautionary tales of why it's important to follow the regimen doctors, nutritionists and nurses had laid out as well as the usual "teen rebellion" under stories. But there was no real judgement attached to this and frankly both stories seemed to be taking a progressive step away from the usual line of "it's just like being normal with a couple of extra steps thrown in". Again, I though that was good. 

But still after all is said and done, I am left feeling like a key part of the story is still missing here. As I said before, this very much could be a matter of limited time to tell a story, but I'm thinking that isn't the only reason. No, I think what's being missed is subtler and in all honesty not something a newly diagnosed person can articulate at the beginning of this process or an outside reporter would know to ask. Nor can the young people's family speak to it when they're also getting used to the new regimen, the tactical aspects of the disease and ultimately, internalizing the new definition of their child or sibling or parent as a person with a chronic illness. Everybody is adjusting and everyone involved wants it to all to just be OK. No one has the desire, let alone the language to talk about how very not normal diabetes actually is or for that matter, will ever be. As I watched the shows though, it felt like the 2 young people featured sensed this, and were reacting to that truth, even though they didn't have the language or perspective of time yet to express it. The adults around them were acknowledging that the "transition" was difficult but were also at the same time implying strongly that at some point these kids would "get used to it" and all would be "normal" again. Any resistance or struggle they were having at this point was framed at least in part, by the fact that they were teens and/or that this was all so new still and they were just getting comfortable with a new process. I understand this. From my experience and point of view, I also think it misses a subtler truth. 

I got used to having diabetes. * I never got used to having diabetes. That's the first thing that came to mind when I started the exercise of capturing 20 things I know about diabetes a couple of years back. I have gotten used to having it on a very basic and deep level of course, as have the people around me. In a very real way it is totally normal for me now making it hard, if not impossible for me to separate myself from it. And yet, as I sit here after all these many years with it, I can say with total honesty that I am still not used to having diabetes as well.  It still shocks and surprises me, it still hurts me physically, and also on a very deep and profound level, it can still frighten me to my bones. These reactions may not be as stark or acute as when I was first diagnosed but that doesn't mean they aren't still there. As I watched those videos about 2 brave young people coping with the profound changes diabetes has brought to them, I was reminded again that yes, I have gotten used to having diabetes and yes too, I will never get used to having it either.

excuse me.

It's funny how our mind works. I've been hit hard by a nasty cold. A nasty, nasty one, right off the heels of a week of early morning presentations and late night election revelry. Add to that cocktail, sneezy, cold infested coworkers and well yes, the minute my presentations were over, it felt like I'd swallowed a handful of razor blades. That was 4 days ago and I'm still enjoying the migration of symptoms from my throat to my head, nose and then chest. It's lovely.

But back to my point about the mind. I realized this morning, as I was surfacing from the coughing, sneezing fog, that I always feel a little put out by these common ailments that inevitably strike us all. It's like huh? A cold. For me. Excuse me? Haven't I fulfilled my "sickness" quotient and then some, by having diabetes? Don't I get some kind of hall pass for this kind of thing? I mean really!

But of course, that's silly. It kind of made me chuckle when I realized how absurd I was being. But still, I also get it. I understand the negotiation I'm having with the universe. I understand the feeling of "having paid my dues". It's my primal mind, my child mind, trying to make sense of it all. It's kind of sweet. And yes sad too, because of course, that's not how the world works, now is it.

green, blue, silver, white and black.

 

Just another Sunday morning taking care of my diabetes. Ah, the detritus. 

"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!

you are brave.

 

I had an interesting conversation with an old friend of mine the other day. My friend's son has many severe health issues which she has attended to on an ongoing basis since the day he was born. Surgeries, infections, daily management of the most basic of physical functions. A lot of very tough, unrelenting issues, not the least of which has been having to watch her child struggle and suffer with persistent physical and emotional challenges. She does all this with remarkable grace and courage and has so for the last 16 years. Every single day. She's done so without really noticing that she's doing it and consequently, hasn't given herself much credit for all that she does in the process.

I shared with my friend that what I've come to learn through writing this blog was that it is very important to notice what you are doing and living with, even if it's become normal over time. Just because we're inside an experience like she is or we are, doesn't make the doing of it with grace any less remarkable.

It's weird how that happens, how the normalcy of the "less than normal" life with chronic illness or disease makes it hard for us to see how remarkable the choices we've consistently made actually are. To engage and do what is needed to be done. To persevere even in frustration, exhaustion or fatigue. To simple carry on, day in and day out. My friend does it every day and doesn't recognize it. All the amazing friends I've grown to know through blogging, they do it every day too. All with true grace and bravery.

I've become more and more convinced that it's critical to notice the remarkableness of our normal lives. I think it really matters to see and own the courage it takes to do this. The fact that we deal with this every day doesn't make it any less brave. I'd argue in fact, that in some ways it makes it more so. It's one thing to be heroic in a dramatic moment or event, but it's quite another to step up every time and do it again and again. Like my friend does with her son. Or the diabetes community does. Yes, it takes a special kind of courage to keep standing up in light of unrelenting physical challenge.

I also believe that once we come to see the remarkableness of our lives impacted by physical challenge, it's equally important to let it count for something. For it to have weight. For it to allow if you will, a trade off wherever possible. I've written about this before and I shared this idea with my friend last week. I'm learning to let my diabetes factor into decisions about what I want to do and who I will spend my time with. I'm starting to let it count for more than just the physical maintenance it requires. I told my friend that doing this is helping me. A lot.

She responded by saying, "But what other choice would I have had than to do take care of my son in this way?" And I said, "Oh, there are so many choices you could have made! You just chose the path of character and courage because that's who you are. It's sometimes hard to see this from the inside, but you are truly one of the bravest people I know. And you deserve some credit and gentleness because of it. You deserve to let the reality of your situation count for something in the places where you have choices about how to spend your time or treat yourself. You deserve acknowledgment and comfort and joy wherever you can possibly get it, because you are so very, very remarkable!"

Because she is. And we are. Even though we might forget it most of the time, that doesn't make it any less so.

work in progress.

 

Yesterday was a wonderful day full of small adventures and happy times. My husband I stumbled on a mysterious place (to me) in search of a scrap piece of metal for a fence we are building. I had an idea and he knew of a place and it turned out to be a magical discovery for me. Fun was had by all.

Later we went to lunch at a favorite restaurant, ran into some friends there, and had a spontaneous meal with them. So fun! We then came home and puttered about, did some more errands and settled in for the night. We started to think about dinner, looking for something simple and healthy to make. There's a wonderful farmer's market we go to where we get the best soup from a local vendor. We freeze it for nights just like last night, when it's cool and we're in need of a warm, hearty meal. We baked some rolls, made a salad and had the perfect, delicious meal.  

Or so I thought. I'd tested before and calculated my carbs and insulin needs accordingly. But somehow I must have miscalculated with epic proportions. 3 hours later I tested as I always do before bed and much to my utter amazement, I was 360! 360! I couldn't believe my eyes. What the hell? I've just started using a new meter, so I tested again to make sure it was accurate. Same number! I pulled out my old meter to just make totally sure and there it was again, 360. I was shocked. I didn't have any of the usual symptoms I have when I'm this high. No choking thirst, no blurry eyes, no urgent need to pee. What was going on here?

Somehow I'd simply miscalculated the amount of carbs in our delicious meal I guess. Miscalculated in the glow of my lovely day. Miscalculated in the number of carbs in the wonderful soup that doesn't come with a label with carb information. Miscalculated in my self assured, lack of curiosity to take a little time to investigate the contents to make sure I was covering myself accurately. I slipped up, and boy did I fall because of it. Yikes.

I feel really stupid. I know that this stuff happens and I should cut myself some slack. I really do know it. But still I feel so dumb, so spanked, so presumptuous that I could somehow just go with the flow. That I could just float on the glow of a wonderful day and not do what I need to do as a diabetic. I know I'm being hard on my self, but still that's how I feel.

I'm feeling warn out this morning. I went to bed late because I stayed up to make sure that I brought my blood sugar down reasonably rather than in a manic crash. I woke up early because, though I had been careful last night, I was a little low this morning. What's interesting to me is at least I'm finally acknowledging the physical toll a high like this takes on me. I didn't do that much before. But now I see it.

What's more interesting still is that I'm not sure I'm truly seeing the emotional toll it takes too. More accurately put, I see it, but only after a bit. Only after I've kicked myself around a little first. It's only after the initial flush of criticism and disappointment that I see what I'm doing, and though I notice it and work to stop myself, that first shame and recrimination has already taken a little something from me too. I guess the goal is to stop doing this to myself sooner. To eventually not go there at all. Yes, I know that that is the goal. I guess, as always, living with diabetes is a work in progress. 

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.