aiming for grace

the goal is peace.

Life is full of choices. Big ones and small ones. We are raised to take responsibility for our lives and the choices we make. And if we are from America, we are raised in a culture that celebrates personal choice at the highest level. The underlying message goes that if you make the right choices, happiness, health, fortune all await you. It's up to you.

But luck plays into the equation too. As does personality and circumstance. It's not like we're all born at the same starting line, given the same tools and set on our way. There are lot's of variables to contend with along the journey. Like whether you get diabetes for instance. A few of us are handed that variable, which brings with it a lifetime of additional choices and challenges and opportunities, and yes, even on occasion, gifts.

I happen to be a person who has taken responsibility for my life and choices very seriously. On the upside, I feel empowered to affect my life in profound and meaningful ways. I know I'm not a victim and I know deeply, that in spite of what has been handed me, I have many choices. I can have impact on my life, regardless. I can make things better.

But there's a rub here too. Sometimes I feel like I'm drowning in choices. Though I wouldn't want it any other way, I realize that all the choices I have in life, with the added layer of the million choices diabetes brings, leaves serious, responsible me feeling like I'm on a tight rope a lot of the time. I expect to make the right choices and when I "don't" (because I have a disease that shifts and changes for example) I often feel like I've failed. Over time, and with effort, I am learning to let go of that feeling, but the truth remains that that's where I go first. Which, by the way, adds another layer of effort: guilt, don't go there, it happens, let go, move on. Five more steps to gentleness. I'm learning to do it differently, but still it's not how I naturally see the world. It's not what I was raised to believe.

But life is a process. And through this process, I'm coming to understand more deeply, that there are infinite variations of living a full and healthy life with diabetes. And more importantly, some of them have to do with choices I can make, but many of them don't. Not surprisingly my personality factors into my experience of this disease, which means I see and feel my journey through a personal filter. Additionally, my particular personal circumstances, my history, mean I have certain choices that others may or may not have. And then there are factors like other health issues, length of time having the disease, biology and physiology, all of which also affect my journey. I'm beginning to understand more deeply, how diabetes is simply part of an equation. Understanding that each person's experience is a unique combination of diabetes plus personality plus circumstance plus choice plus biology, helps me to see the the difference between my particular choices and that of others. We all have a thousand choices to make about our disease every day, but because we're also different people, we may make different ones, based on the all the variables we don't share. Doing what's right for us, based on so many unique factors, and then living with the outcome. That makes total sense to me intellectually, but I must admit that I still feel burdened by the fact that choices aren't always pure or perfect. Choice means yes to one thing and no to another. And in the case of big choices, the difference between yes and no can be profound. Even though I know I've made the right choices for me, it doesn't always mean I don't feel sad about what they've meant for my life. Choice doesn't mean perfection necessarily.

So where this all lands is that I'm trying to have less regrets about the choices I do make, big and small. From this vantage point in my life, where I've made some tough calls that have set me down irreversible paths, this is a really important goal. I've made the choices I've made based on what I knew at the time. Diabetes played a huge role in some of these decisions. Choice plus circumstance plus personality plus luck. It's the equation for life. I guess that peace has to come from knowing that I did the best I could with what I knew at the time, based on who I am. That's the goal anyway.

dancing with body and mind.

I haven't been dancing very well these days. Lately I've been stumbling over myself when it comes to my diabetes. It's one of those mysterious times when things seem to have shifted. What used to work, isn't right now and so I am bumping and grinding through my days. Up, down and all around. I hate these times because of course, they don't feel good. But also I hate them because they bring out some of the less than helpful aspects of my personality. The parts that agressively want to get after the problem. A 330 rebound bloodsugar, well let's get it down damnit. So I over bolus and crash again. A 40 bloodsugar, well let's get it up damnit and an hour later I'm rebounding again. I'm not interested in 15 carbs and sitting it out through the discomfort of 15 minutes for it to take effect. What if it doesn't, I think? What if I'm damaging myself, I worry? Thoughts circle my mind like an manic gerbil in a gerbil wheel, all while my poor brain literally feels like it's in a vice. Headache, sparkles in my eyes, sweaty. It's kind of miserable all around.

It's hard for me to tease out whether I'm helping myself or making it worse at times like these. There's definitely something up these days. I'm not feeling the lows until I'm very low, which means the old liver is "helping out" when I finally do start to treat it. My doctor said if this continues, we need to have me run high a few days so that I can regain my sensitivity to lows. So I guess that's where we are now, which is fine. We wanted to see if this pattern would continue, and it has, so on to plan B. But like everything else, it's an experiment. One which has the obvious physical aspects of it (how can I get back the feeling of lows before it's too low) as well as the behavioral aspects which is the me part. The part where my personality and worry getting involved. Making it better and worse. The funny thing about this is that it's hard to notice when you get it "right" because it's just good and on you go. But if and when you get it "wrong", well then it's clear. Operator error with real ramifications. Hello rollercoaster. Hello guilt. Hello worry.

I do know that this will work itself out. It always does. I guess that's the good news about having diabetes for so long. I've been through this before and I'm sure I will again. Lucky for me, the mind that gets all bound up around this stuff, also provides the philosophical insights that help me through times like these. It's physical, it's philosophical. It's body, it's mind. Act, react. Analyze, forgive. Focus, let go. My goodness, what a dance this life with diabetes is.

postscript: Last night I tried something I'd learned from a person who posted a comment recently (though I'm haven't found the exact post to credit them yet...SORRY). When I was high after a low, I took half of what I normally would have taken to correct the high. And it worked. My mind said no, take more, but I didn't listen to it. It sounds basic, but truly, I've haven't bounced so high and low for such a long period of time, since I went on the pump. I'm kind of out of practice...so I listened to someone else who'd been through this very thing, and thankfully, it worked. Thank you, thank you, thank you to whoever you were with the great advise!

defining normal for myself.

Lately I've noticed that I spend a lot of time navigating between feeling different and feeling like I'm just like everyone else. Normal in my living with diabetes. Different in my living with diabetes. Fully inhabiting my world, yet also tweaking my bloodsugars on the side, catching a low here, counting carbs there. On, off. Diabetes, email, meeting, lunch, diabetes, more email, more meetings, blood test, continue. Different, the same, the same, then different. It's like a lens on a camera focusing tight on a detail, then pulling back again to see the whole picture. Sometimes normal, sometimes different, whichever it is, I know on one level it doesn't seem to really matter. But then I remember what a long journey it's been to get to a place where I can see my life with diabetes, in all it's stark differences. I work hard at seeing it so that I can let it matter and count for something. That seems right to me and it's made me feel better in the long run.

Seeing the differences clearly however, does mean not being like most of the people I know, and having that be ok. Which makes sense to me too, because if being like everyone else means not having to deal with diabetes, it's not possible for me to do it anyway. So what happens is that the definition of normal becomes a definition I create. The definition of normal becomes one of being whole, healthy, contributing, alive, focusing in on blood sugars for a moment...and then back to email, just like everyone else.

2 ah ha moments.

I just started reading the book, the five gifts of illness, thanks to amy's recent review at dlife, and already it's reminded me why I like well written, thoughtful analysis and focused consideration on a subject. The author, jill sklar, articulates a really interesting idea that I've never seen framed up so clearly. She points out that living with chronic illness is a relatively new experience, when looking at the history of humankind. Thanks to medical advances and technological breakthroughs, people with diseases like diabetes are able to live long lives now, where before they would be diagnosed and die soon thereafter. This was an ah ha moment for me. I got to thinking about the state of chronic illness, or living life with disease, and realized that if viewed as a relatively recent phenomenon, then it follows that culture has not necessarily had a ton of time to understand or even at times recognize it. There aren't many customs or milestones or ways to handle it because life with chronic illness as a state of being, just hasn't been around for that long, historically speaking. And in the absense of dying, the living part is all that people see. Of course, we all love the living part, no question there! But it seems too that culture often only sees the living part, and then stops seeing when you get to the with a disease part. Another ah ha moment for me! This could be one of the reasons why I feel so invisible with diabetes. The state of living with disease is not collectively, culturally or consciously understood or recognized. It's a state of being that does not register. Neither fish nor fowl. Neither here nor there. When I read this idea, a piece of the puzzle fell into place and I understood something that I'd felt for a long time from a new vantage point. And though that doesn't necessarily change the world I live in, it does help me understand it a little better. And a little more understanding always seems to help.

if not now?

I read amy's post, living with it a few days ago, and I have thought of it often ever since. I'm so grateful for the web and the OC and the dedicated, open people, whose generosity of spirit has reminded me that I'm not alone in this journey with diabetes. amy's recent post articulated a particular, specific moment, that I have experienced numerously over the past 20+ years with diabetes. One that is so real and frankly, so important in reminding that I am still a person first. A person who is still capable of feeling shock and despair about having diabetes. Yes, I'm also a diabetic. Yes, I'm used to it. Yes, I live with it and make the best of it. But yes, I also can't believe it in my soul, that I still have it and will so forever, unless there is a cure. That momentary breathlessness, like I've been kicked in the stomach and had the wind knocked out of me, still happens. And thanks to amy's post, I know that it happens to others too. Yet again, I feel a little less alone and for that I'm so grateful.

So we still have diabetes. What has been coming up for me more and more lately, is that fact, has to matter for something. It has to count. Meaning that it has to count in positive choices I make in my life, because it certainly counts for so many accomodations and difficult choices I have to make. I know too that some of this thinking is also fueled by the fact that I'm smack dab in the middle of my life (she said optimistically) and it's what you naturally think about at this time. What's the rest of my life going to be about? What matters most to me? What matters most? And what keeps coming up for me is the phrase: if not now, then when? If now isn't the time to actively move towards the things that have meaning to me, then when exactly will it be? Later? When there's a cure? More and more, I realize that what I've earned, is letting all that I've struggled with around diabetes count for something. I have permission for different choices because of it. A more authentic living of my life. If not now, then when? The more I let my diabetes count for something, the more I find myself saying, well, yes, now would be a good time. A good time to get a studio to do my art in. A good time to learn horseback riding. A good time to put those new windows in so I can see the garden better from inside, on those many rainy northwest days. Letting it count means letting it count for now. Letting the when become now.

symbolism.

I'm big on symbols. They're borderless. They transcend language, country, and time. As such, I love the red cross symbol. For me it means health, safety, connectedness. It's modern and timeless. And since I live with diabetes, it's come to mean a little bit more for me. I guess I identify with the good parts of the red cross. The healthy, safe parts. They symbolize what I'm trying to be with diabetes. Healthy and whole in spite of it and safe for the future by staying in good control. Which makes me think that the red cross also stands for hope. Hope for health and safety and a better future.

1,000 apologies to the person who took this picture on flickr. I've lost the link so I can't give proper credit. Sorry!

capturing the details.

I really appreciate art and what it brings to the world. I can't imagine my life without art. Making it, appreciating it, thinking about it. I love it when I see the world differently because of a piece of art or a particular artists take on life. Like the people who've I've mentioned before, who photograph everything they eat for a year. Or the artist, who's capturing his entire life, every minute, every day, for a project he calls tracking transience as a reaction to being stopped, questioned and proven innocent after 9/11, thanks to his pda calendar. Or this project from microsoft called my life bits. All very interesting iterations on the theme of capturing and cataloguing some part of ones daily life in "scientific" way.

And what I find interesting about it personally, is that it highlights the fact that I often have to do that very thing, while living with diabetes. And because I have to do it, I find it a burden, not a source of interesting insight or commentary on modern life. I see it as a chore instead of information. Is that just because I have to do it? Is it because it's just one more annoying detail I have attend to around my diabetes? Is it because it requires my attention yet again? All interesting questions which I probably wouldn't have considered, if it weren't for art. I like that. I like stopping and questioning stuff I just take for granted. I like the opportunity to see what I have to do in a different context. Especially if it gives me an opportunity to frame up that task in a happier, more interesting way.

Images are a screen grab from various photos on flickr so thanks to those taken by someone other than me.

dreaming of cookie.

I went to bed a little blue last night, hoping that today would be better. I expected it to get better once I woke up, but instead it got better in a dream beforehand.

I've had animals my whole life, and they rank as one of my greatest sources of joy. I'd place them tops on my list of what helps me in living with diabetes. I have 2 dogs now, Ruppert and Flora and they are just the bees knees. Before them we had a wonderful, funny dog named Cookie (her name before we got her). We got her at the local humane society when she was 6 years old and had her for 5 delightful years. My husband used to call her the "dog of good cheer" and oh, she was just that. It's like she smiled with happiness, and was up for pretty much anything. Having said that, it was obvious too, that she'd been treated poorly by her former owners because she was skittish and easily frightened. But over the too short time we had her, she grew to be calm and silly and happy. Cookie, the vunderhund. Unfortunately though, her last year was a tough one. Her health began to deteriorate and after countless tests and treatments, we still never found out what was wrong with her. She basically just wasted away and over time, her quality of life diminished profoundly. About 18 months ago, we made the difficult decision to put her down which was so painful, but in the end, the most humane thing to do. The kind vet came to our house and she died in my lap, in our garden with the birds singing and the wind blowing around us. It was very, very sad and I miss her every day.

Which brings me to last night. I had the most vivid dream about Cookie. It really felt like she'd literally visited me, which sounds silly but feels true. In the dream I saw her lying in the road with her back to me. I approached her, fearful that she was injured, but when I got there, she rolled over onto her back, asking to have her belly scratched as she always did. She seemed so happy to see me and I was just overjoyed. She licked my face and nibbled my chin gently, something she used to do to me every morning when she was alive. She stayed with me for a while and a feeling of warm comfort and calm washed over me. It was as if she was coming to comfort me when I needed it most. When I woke, I felt totally content and happy. The vividness of my dream of Cookie has lingered through the day, as well as the realization that in fact, everything is, and will be, ok. It's amazing to me, but she is still bringing me comfort and joy. How wonderful is that?

a magical day.

Yesterday was one of those magical days. Start to finish. It started out with a project I've been asked to participate in with some colleagues from work. A rebranding exercise for a local non-profit who works with childern who have cancer, their families and friends as well as the hospitals, doctors and staff who care for the child. They "fill in the gaps" between services offered by the hospital, other non-profits and the state. The woman who started the organization, lost her 5 year old to cancer many years ago and one of her ways of dealing with her horrible loss, was to build a place of comfort, joy and support for others who have to go through what she had to. She's created a remarkable organization, focused on joy. Their working principle is that whatever time anyone of their clients has, it should be filled with as much joy and happiness as is possible. So they bring music and musicians into the cancer ward. They connect kids with 'buddies' who hang out with them during chemo, play with them when their parents need a break, whatever the child needs. They provide a community and navigational tools for overwhelmed families. It's just a lovely and worthwhile organization.

So I was asked to help on this project, by a man I've worked with for many years, and whom I deeply admire. This man has always been such a support to me through my own journey with balancing diabetes and work. Supportive, safe and an advocate for me. So when he asked if I would help, I did not hesitate to say yes. But I have to admit that inside I was a little nervous. Nervous about getting close to such a sad and hard place. Apprehensive about feeling sadder, when I work so hard to find joy in my own life. And guilty that I was feeling these feelings.

After a bit of thought though, I realized that my friend had invited me to work on this project because of my own experiences with illness and disease. I realized that I had something to offer beyond my business and design skills. I had a special insight that though, not exactly the same as what this organization dealt with, had some shared aspects that could prove useful. My experiences with living with diabetes could possibly add to what my team had to offer this group. So though I was a bit scared, I was also excited.

So yesterday we met with the organization and it was amazing. It went so well and the project is very exciting. I brought my 20 things I know about diabetes book as well as my collage journal, to show a visual expression of one person's disease process. And people saw it and understood it in a way I've never experienced before. Plus the insights of living with disease well, did help in the project, both in credibility and understanding of the right tone needed. There is still a lot to be done, but we are off to a good start. And what an exciting and meaningful day!

I came home very tired but happy, excited to share all that had happened with my husband over dinner. My husband I discussed going to a nice restuarant and maybe a movie afterward, but in the end, we ended up just going to a local mexican restuarant chain. The food is pretty good but the atmosphere is basically cafeteria style. Lot's of tables, with people you don't know, eating close by. I sat down first while my husband was getting the food. I took out my hello kitty bag, pulled out my bloodtest meter and took a blood test. And then suddenly, a voice came from behind me. A young boy, probably around 8, bounced into view, exclaiming excitedly that "he had one of those too". I said "you do! Wow, we're just alike." He could barely contain himself with excitement. He told me how he had a couple of meters because sometimes they forget one. He told me how he'd been diagnosed a year and half ago and how "he was getting the hang of it". We talked for a few minutes and then his father came over and said how his son was always noticing people with diabetes. That he had been sad about taking his blood test and shot earlier that evening but now he was happy because he'd found someone else who also had diabetes too. He then turned to his son and said, "see honey, you're not alone". My husband arrived and we began to eat and again a voice came from behind. The little boy said from his chair, "you're having a burrito and I had a burrito and we're both diabetics!" And then he smiled. I said yes, we were a lot alike and I literally had to choke back the tears. After a while the family got up to leave and as they passed the table, the boy said goodbye. His father said thank-you to me for talking with his son and I said that no, it was all my pleasure. I then turned to the boy and said I knew that the bloodtests were hard but he was very brave and strong. His dad said to his son, "yes you are strong" and flexed his arm. And his son laughed and said, "dad, it makes me strong on the inside not the outside!" and giggled and was gone. Now I really had to choke back the tears.

Oh what a day! I still can't quite believe it. I felt so visible, connected, contributing, and recieving as a diabetic and a person. As a person with diabetes. As a whole person with diabetes. The day was about giving and recieving so much in return. And then in the evening, by just taking a blood test, getting the unexpected gift of connecting with such a sweet and wonderful boy. His joy in finding someone like him, his excitement in sharing all that he'd accomplished, and his wisdom in knowing that he was stronger on the inside because of all that he had to do with diabetes, truly moved and honored me. I've never had this sort of thing happen to me before, and how amazing that it did happen on a day that had been so focused on children and illness. It was just magical.

Yesterday, I learned a big lesson. By opening up to something that I was nervous about, by showing up to help others in need, by trusting my friend in asking me, by acknowledging what I have to offer because of this disease, by being open and sharing of my personal insights, I was showered with unexpected gifts and affirmation in return. By reaching out beyond my comfort zone, I was comforted in ways I never imagined were possible.

Oh, what an magical day!

tit for tat.

I've been thinking a lot about some of the harder emotions surrounding diabetes lately. Anger, frustration, sadness, boredom, resignation. They're all important and they're all real. At least as real as diabetes is. I also keep thinking about how diabetes just is for me now. 20 years of having it, makes it as real as breathing or eating to me. I keep thinking about how I can look at having it differently, in the effort to minimize the anger and sadness, which can hurt so much at times. Is there a way to do that? Because though I feel those feelings (more at certain times, less at others) I can't help but think that since diabetes is as basic as breathing to me now, it's a little like getting angry at walking instead of being able to fly, or aging when I still feel young inside, or winter because it's cold. Nature is as nature does. And my nature happens to include diabetes. For me, it's neutral at it's best, at times more unpleasant and demanding. It requires that I do stuff to stay healthy, stuff that most people don't have to do. And undeniably, it's not fair. But I have wondered lately, that if I could focus less on the injustice and more on the "normalness" of it in the context of my life, would I feel less burdened in the process? Because for me, that's the goal. Diabetes is hard enough, so how can I minimize it's impact beyond the amount that's non-negotiable? Would reducing the emotion around what's happening, make it hurt less? Or instead of reducing the emotion, refocusing that energy on more feeding, healing, happy stuff. More joy, demanding of beauty in my life, seeking out more play and delight to offset the space diabetes takes up in my life. I don't mean ignoring the anger or sadness, but rather let it be a gauge to actively augment against. Quid pro quo. Tit for tat.

I really don't know the answer. I really don't know if it's even possible. But it's been on my mind lately. It is, at the very least, an intriguing idea to consider. A noble goal to shoot for, if impossible to always actually reach. Even if I can't achieve it all the time, it's bound to reduce some of the pain. And that sounds like a great trade off to me.