aiming for grace

what's in a number?

 

487.

It proves I have a disease. When I was first diagnosed, my blood sugar numbers were in the high 300's. Something was obviously wrong with me given all the weight loss, the incessant thirst, the need to pee all the time. It took one blood test to know what it was. One number and it was clear that I had diabetes. That blood test was the day my life changed forever. One way of living ended and a new way, one filled with numbers and calculations, physical ups and downs, psychological challenges and trials began. That day I started to live my life in small increments punctuated by blood and numbers. An hour here, stop and test and decide. 3 hours later, do the same. 5, 7, 10 times a day. From then on, until now. When I look back on all the days preceding this moment now, I see a time table, a chart full of numbers and countless decisions, stretching back behind me as far as the eye can see. 

487. 

That was my blood sugar reading a couple of days ago. I'd forgotten to take my bolus at breakfast. A simple, though rare mistake on my part. I've been having quite the struggle with my blood sugars lately, in part because I've also been battling the flu the last couple of weeks. For me unruly blood sugars mean lot's of interruptions at night. High blood sugars at crazy hours. Which also means I'm extra tired on top of the toll the elevated blood sugars (and inevitable crashes that happen when trying to correct them) take on me. Extra tired and distracted so I just assume I'd taken my usual bolus before breakfast until I felt strangely queasy and disoriented. Hm, what's up, I wondered? I tested and there it is, 487. Crazy high 487. Mystery solved.

It's a couple of days later and I continue to wrestle with my night time blood sugars. My doctor offers suggestions, I try them, I gather data, I call again, we try some more. If this doesn't clear up soon, I guess I'll go on the sensor for a bit. Not the end of the world, but yet another thing to deal with and wear on my body. My body that's literally tired, the skin fatigued from all the tubes and liquid and adhesive it's endured for years. I know I'll do it, but I also feel like I want to scream NO! I've had enough. I can't believe I have to do this too, on top of candulas and finger pricks and set insertions. A primal part of me is begging me not to do this one more thing. I know I have to quell that voice inside me as I've done so many times before. I know it, but for just a few days, I'm letting it win.

And then I remember something that is so simple, and yet is so easily forgotten in all the busyness of my day and life. I remember that I have a disease. I have a disease and I'm as "sick" as the day I was diagnosed. One missed bolus before a meal and my blood sugar is 487. One missed dose of insulin and there you have it, plain as day. I have a disease. 

I want to remember this a bit more. Not to feel sorry for myself but rather, to see what I do, what's become routine, and honor it. I want to remember it so that I can own all the difficult choices I've made, both big and small, every single day, every few hours, since the day I was diagnosed nearly 23 years ago. And along with that I want to remember too that I've also changed since that day. I'm now a person who is 23 years older with diabetes and as such, has a different body at a different life stage. What has worked for the younger me, doesn't necessarily work in the same way for the present day me. And what works today, might not work in the future. Just because I've "mastered" the regimen doesn't mean it's always going to turn out the same. 

487.

So though it wasn't a good number to have, it's turned out to be a helpful one. 487 reminded me that in fact I do have a disease. It reminded me of the long journey I've been on and the fact that at this point in time, there really isn't a destination or ending. 487 reminded me that along the way there are countless moments of victory and that at the core of it all, I'm doing the best I can with a very tough and unrelenting disease. And truly seeing that really does matter, regardless of what the numbers say.

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. 

up and down.

 

I'm really trying to not let my diabetes be an excuse for feeling sad or down. In truth, it is a real source of ongoing challenge and fatigue. Because of this fact, I've worked hard to give myself the space and permission to take the time I need to replenish and recover from all that diabetes demands. I've worked hard at letting it count and be seen for what it really is, by others, but more importantly, by myself. I've worked hard at cutting myself some slack about sometimes feeling the blues just because I have diabetes. 

On the other hand, I also don't want diabetes to get into the way of living the most vibrant, engaged, full life that's possible. I don't want it to be an excuse for not leaning into life. I struggle with this still. I'm struggling with it this morning. I guess I haven't found the perfect balance yet. I wonder if I ever will.

dealing.

 

There are days when I feel just battered by diabetes. Both physically and emotionally. These last couple of weeks have been tough, dealing with routine changes from holidays, "celebratory" meals outside my usual diet, challenging medical procedures as well as the standard ups and downs of life with diabetes. I've had a couple of highs and lows that were off the chart, particularly hard on my body as well as my spirit. This morning as I lay in bed before I started my day, I realized how emotionally worn out I am by all this physical challenge. I'm tired to my heart of having to constantly deal with this disease. I know that this feeling will pass as my day takes on momentum and I get on with my regular life, but for now, at this very moment, I need to acknowledge how I'm feeling. A little shaky and a bit emotionally bruised from all the "dealing". 

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.

"when thumbs up is no comfort"

 

Did you see the article, when thumbs up is no comfort by Jan Hoffman in this Sunday's New York Times? What a wonderful essay about how our culture approaches illness and disease (cancer in this case), about how we generally expect people dealing with health issues to buck up and inspire us, among other things. "'Whether you're a celebrity or an ordinary person, it's obligatory, no matter how badly you're feeling about it, to display optimism publicly', said Dr. Barron Lerner." The article goes on to question this cultural norm, articulating the pressure it can put on the person dealing with the disease or chronic illness. "While many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome." 

 

I'd go further to say that the pressure and expectation to always "keep one's chin up" can drive a person to denial or the dismissal of the magnitude of the reality of the situation at hand because, hey, at least it's not, insert "worse disease" here. Conversely, a person can come to feel that there's something fundamentally wrong with them because they can't maintain "a happy, brave face" day in and day out. I remember when I was first diagnosed with diabetes that a number of people, both friends and acquaintances, said to me that I should feel lucky because at least I didn't have cancer. On one hand I'm sure that they were trying to "look on the bright side" of what had in fact happened to me but the underlying message was so dismissive and erasing of the experience that I was actually having. I'd just been diagnosed with diabetes, a life threatening, unending, difficult disease that now meant that I'd face struggles both big and small, every single day of the rest of my life. Yes, it wasn't cancer, but still diabetes wasn't exactly a walk in the park either. For years I've struggled with the deeper pressure those comments implied, that I was supposed to feel lucky that I'd only gotten diabetes given all the diseases I could have, and as such, should put on a sunny face and get on with it. 

The truth of the matter is that it's only been through not always being upbeat and cheery about having diabetes that I've actually been able to find some of the inner strength and wisdom to use this experience as fuel to a more joyful, present and authentic life. And that strength and wisdom has only become apparent to me recently, and exists only tentatively even now. The point is that this is a dimensional, emotional and physical process, one fraught with challenges and joys, two steps forward, one step back, taking on many forms and expressions along the way.  For some this is a battle, for others a journey, but for everyone it is at it's core, a personal process and as such, unworthy of one, narrow cultural prescription. Again the article articulates this idea nicely, "'Metaphors don't just describe reality, they create reality", said Dr. Gary Reisfield. "You think you have to fight this war, and people expect you to fight." But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions. To describe a patient's process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, u-turns, it's changing destinations; its absence of win, lose or fail."

I couldn't agree more. 

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.

seeing courage through the routine.

I've been thinking about the idea of courage lately.

Recently on dLife, they featured the incredible story of eva saxl. The author James Hirsch, who has written about eva saxl, was interviewed on the show. He said something during the interview along the lines that all people taking care of their chronic illness are living with courage every day. Which isn't a new concept to me but once reminded, has stuck with me throughout the last couple of weeks.

A few days later, while having lunch with a new friend, the subject of courage came up again, this time after I mentioned that I had lived with diabetes for over 20 years. My friend got quiet and after a moment, looked me in the eyes and said "You know, you live with courage every day. Every single day." I was surprised (and touched) to say the least. And, quite frankly, left a little speechless. Courage every day. There it was again. And yes, after a moment of reflection, I thought, I know that's true about a life with chronic illness. I certainly see it in other people's journeys with diabetes. Easily. But I forget about it in my own, because I'm just doing what it takes to get through. You know, everyday stuff, because diabetes is there to be taken care of, throughout every day. Every single day.

So what occurs to me is how the routine of what we do becomes just that, routine. In the process of doing what it takes, day in and day out, the aspect of what that means, the courage, the fortitude, the grace, can so easily get lost in the shuffle. Others might see it, but it's easy for me to forget it about myself. Even as I write these words, I feel worried about sounding prideful or arrogant. And yet there it is, the universe saying yes, it takes courage to do this. Courage. Every. Single. Day.

just a moment in between.

I've been feeling pretty good about my diabetes lately. Which is to say that it hasn't weighed too heavily on my heart or mind. I've still had to deal with the inevitable highs and lows, the adjusting and all the calculations, but for some reason, it hasn't felt like such a burden. Hooray, I've been thinking.

And then today, I'm changing out my site and in a blink of an eye, I'm pulled back to that sad, hurt place I've been in so many times before. The insertion itself hurt, the insulin stung because it was too cold, the tubing got tangled in my tights and slip and undershirt and skirt, which made my still recovering frozen shoulder ache as I wrestled to get everything untangled. I had to stop, take a deep breath and start over. Basically get undressed and slowly add the layers of clothes on in a way that didn't tug on my site (a thing that always makes me feel a bit nauseated) or make it impossible to get access to the pump when I need to bolus later. It took a minute, but when it was all done, I literally had to fight back the tears. My leg where the site was, was aching. My shoulder was also aching. And my heart was aching too. It took a moment to collect myself. It was amazing. Weeks of zooming along with no problems, with feeling like everything was fine and then, boom, in one minute, I'm near tears. Amazing. Strange. So very "this disease" for me.

I guess in the end, these moments are inevitable. I guess the goal is to have more time in between them. I guess that's really what success looks like, at the end of the day. More happiness and well being, without the expectation of perfection or the inevitable disappointment when it isn't achieved. I know that's the case. But on those moments when I'm so sharply brought back to the pain and frustration and sadness of having to deal with this disease, I sometimes forget that.

can limits be possibilities?

I went to the portland art museum yesterday to see the chuck close prints: process and collaboration exhibition. Chuck Close is one of my favorite contemporary artists because of his amazing study of color as well as his exploration of the wide range of materials and production methods he uses to make his art. The exhibit features many of his prints and paintings but what was most exceptional was the fact that the various process' he uses to make his art were shown along side the finished work. Etching plates, carved wood panels, and a series of screen prints shown in stages, with each progressive screen adding yet another color, revealing how the final idea emerged over time. This exhibit highlighted Mr. Closes technical mastery, his meticulous attention to detail and unrelenting dedication to a complex process of making. I thought I knew and loved his work before, but after seeing this show, I walked away with a greater understanding and appreciation for his art. What an absolute treat!

I walked away with an appreciation for this man's art unto itself, moved by it's beauty and technical achievement. But I also walked away with a few thoughts that might apply to my life with diabetes. The fact that this amazing work is done by a person who is a paraplegic with limited use of his arms is also remarkable. To say that Mr. Close suffered an enormous set back in life, one which imposed profound physical limitations on him, is a colossal understatement to say the least. I have a hard time imagining what it must have been like. I have a hard time imagining what it took to move forward to paint again. But the fact that I can't personally imagine what it was like or what it took to start again, and the fact that my physical situation is completely different from Mr. Closes, doesn't diminish the lessons his story offers to me. It's not about comparing the level of challenge each person faces but rather, respecting and learning from the way each person approaches their journey and then applying the lessons that make sense to your own. For me, Mr. Closes particular story resonates deeply. The way that he made his art had to change to address his new physical state and as such, his art changed too. Limitations were accommodated and his art continued to be created. He made what was dealt him work, regardless.

Now I'm not going to go to that place about what a "blessing" limitations are. And I'm also not going to talk about how there are no limitations, just lack of will. Everyone has their own response to the physical limitations imposed by disease, disability or accidents. Sometimes getting up in the morning is the most courageous act a person can muster that day and sometimes that's as important to celebrate as any other type of accomplishment as far as I'm concerned. No, what I'm taking away from Mr. Closes story is more of an idea about possibility. I'm taking away the idea that maybe limits can be possibilities too. Given the choice, I'd hand in the limits of diabetes first chance I could get. But in light of the fact that there isn't a choice, I'm left with the question: what are the possibilities here? What can I learn from other peoples journey's with physical limitations and what lessons can I apply to my own?

When I step back from Mr. Closes story, I take away two key lessons. One idea is kind of romantic, the other is practical, but both are very important.

The first lesson I learned was about passion. When I look at Chuck Close's art, I see an enormous curiosity and ability for obsessive focus. There is a deep interest and passion around making and understanding and finding a kind of perfection, on his terms, for himself first. When you see the 100+ screens for a screen print series, you know that there's a journey towards something perfect and complete going on here. A narrow subject range and idea is explored over and over again, with different mediums, through different lenses. Passion, curiosity and deep focus, all feel to me like they're important sources of energy for this incredibly rich, alive and profoundly beautiful body of work.

The second lesson I learned was about collaboration and outsourcing. Less sexy than passion but just as important. Mr. Close's situation, and the art form of printmaking, requires the help and expertise of others to execute his artistic vision. The write up that accompanied the piece called Emma, spoke repeatedly about the trust he had to give to the master printer who was producing it. That it was hard for Mr. Close to let go of the control of the making of the piece. But in the end, Emma is magnificent, due in great part to that very collaboration and dialogue between the artist and the craftsperson. The actual making was outsourced, but the idea, the genius, the artistic story was Mr. Closes, made better through collaboration and trust. To bring that story to life, he had to let others help him do it. And magic and beauty was the result of that process.

So at the end of the day, I saw some wonderful art yesterday. The questions and lessons that came from yesterday however, will be carried with me for far longer. Questions like, what are the possibilities that lie within the physical limits that diabetes can present? What is the passion in my life that transcends diabetes and all the struggles it can carry? What do I need to do to accommodate the limits I feel? What things can be outsourced and who can I collaborate with to bring to life the things I am trying to build and experience in my life in spite of diabetes? And most importantly of all, what new thing can be brought into the world because of the limits I experience?

What are the possibilities?

Image via don relyea's blog.