aiming for grace

more ya-hoo.

I've been in a bad mood about my diabetes lately. Feeling extremely sorry for myself. I've gone down the rabbit hole of self pity and though it's totally understandable, it's not a fun place to be. I know this happens on occasion but today it stops. Half empty is becoming half full. Feeling the way I've been feeling only makes me lonelier and grumpier and harsher. And ultimately it only hurts me. Though I understand why it happens and I can even justify it, I woke up this morning realizing that I had a choice here. So enough of the boo-hoo and on to the ya-hoo. It's sunny and gorgeous and the day is young. Happy day.

the importance of treats.

I'm convinced that a key part of taking care of myself with diabetes is small (and at times, big) indulgences. I'm watching my brave, dedicated friend go on the pump and through the observation of her experience, I remember mine. The shock associated with the realization that I was becoming attached to a machine, 24/7. The reaction to having this clinical, medical tubing hanging off my body at all times. The dehumanization of being beeped at day and night. I know in my head, that the choice to go on the pump was smart and helpful and the right one for me, but in my body and heart, I also know that this process is strange. I know that the "rightness" of my choice, doesn't mean that all the other feelings are invalid or unreal. Making the smart and better choice to live attached to a machine vs. multiple shots a day, doesn't mean that being in the position to have to make this kind of choice is fun or good. In watching my friend go through this process, I am reminded about how much I've gotten used to. I am reminded, yet again, that this isn't much of a party, this disease.

I am also surprised at all the coping mechanisms and tools I've developed over the years. I've worked hard at finding the things that help and have consciously moved toward them. I've gotten better at bringing the sunny people and things into my life, and where I can, let go of those that drain energy or joy. I watch the news less, I walk with my dogs every day, rain or shine, I pace myself in what I take on outside of family and work. It's a process that I have to keep working at, but has also helped enormously over the long haul.

So when my friend is momentarily demoralized or sad or overwhelmed, I think about what might help her. This has been an enormous gift my friend has given me. It's allowed me to see diabetes from the outside in for the first time, and in the process understand the inside out way I've experienced it up to now. Until I needed to think about what would help her, I hadn't clearly seen what systems and techniques I've developed to help myself over the years.

So what's occured to me in this process of trying to help my friend in some small way, is the fact that all this stuff we do, even if we don't notice it anymore, takes effort, work, focus and energy. We are actively doing something, every time we take a blood test or bolus or change a site or deal with a low or high. We are drawing from our mental and physical reserves to deal with our diabetes. Fine. That's what it takes to do this disease and I'm resigned to that fact. But what I've learned intuitively, and am now able to bring to voice in the effort to help my friend, is that it's important to fill that reserve back up with things that bring you joy. Period. It's necessary to stay healthy and motivated and courageous. Energy takes food. And that's why treats are so important. Indulgences. Baubles. Whatever floats the boat, it's important to refill with the things that are a gift. A gift I give myself, to me, from me. Because I think on some deep, primal level, my body doesn't understand why it has to go through all this stuff like having a plastic tube in it or constantly being made to bleed. It sounds woo woo but I think I need to make up for that, for myself, where I can, in whatever way I can. And a treat is one very effective way of doing that very thing. Effort to deal with diabetes, out, effort to make it better by treating myself to a tee shirt or an extra walk or a movie, in. It's like a bank. A reserve that needs to be replenished. Just because I have diabetes.

So I shared that belief with my friend and we decided to go shopping. We found her something special, because lord knows, she deserves something special, and though it didn't mean that she wasn't going on the pump, it did mean that she felt prettier and more cared for and celebrated in the process. She felt a bit better, and in the end, from where I sit, that's all that matters.

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.

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.

fun with boring routine.

I love this illustration by keri smith. A list doesn't have to be boring. Yes, this takes time, but it could be fun to do once in a while. Draw all the food I've eaten, with a note about all the insulin I've taken too. Or take pictures of everything eaten in a day with a tag in the picture with how much insulin I've taken to cover the corresponding meal. Funny. Fun with boring diabetes routine. Might as well try to make it entertaining once in a while, right?

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.

a little slice of heaven.

It's important to get a better picture of the situation. It helps me. It helps me to see diabetes, through pictures or words or metaphors. For whatever reason, once I have a better view, I can move forward. Because that's what this exercise is all about. Moving to a better place where possible. I don't have a choice about having diabetes, so what other parts of my life do I have choices about?

My recent post piece of the pie helped me to see diabetes in a way that really makes sense to me. The day is finite, diabetes is a constant that gets bigger sometimes, and is always a slice, regardless. True. And it's helpful to me in understanding why I feel overwhelmed sometimes, or resentful, or just plain tired. Good to know and see. I know that I don't have control over the presence of diabetes, but I do have control over other pieces of the pie. If diabetes is always there, I think that I need to carve out another slice and make it permenant too. A little slice of heaven. The anti-diabetes piece. The friend of diabetes. The ying to it's yang.

So that's my new year's resolution. This year is going to be about exploring what my little slice of heaven is all about. I know some of the things that populate it. Like Flora and Ruppert my dogs. Pearl, my cat. Gardening. My husband and friends. Those things I know. But still, I want to get a little more active about this idea. Broaden the appeture. Try some new stuff. I'm dedicated to my diabetes, so I should be dedicated to this slice of pie just as much. It's not extra. It's a given, just like diabetes. More joy. More play. More fun. You know, my own little slice of heaven.

Now that picture makes a little more sense to me.

fashionably whole.

I've blathered on about the challenges of being a woman, wearing a pump and trying to be and feel stylish. Others have too. With all due respect to the pump engineers, it feels like they assume that everyone wears waistbands ALL THE TIME, regardless of gender, so a nice plastic clip is all you'll ever need. I've whined about the pathetic option we women have been given, of strapping the pump to our legs like we're some kind of modern day pirate, if we have the gaul to want to wear a dress once in a while. It's not the end of the world by any means but still, it's kind of demoralizing when the rest of the female world just gets to go with the fashion flow, while we're left the worry about how to deal with the lumpy, life giving brick attached to our bodies.

Case in point: I personally love the diane von furstenburg wrap dress. It's been around forever and given half the chance, I'd buy about a thousand of them to wear as a part of my perfect uniform. They're sassy, grown-up, comfortable and very flattering. But please, barring the velcro pirate trick, it's not going to work with my friend the pump. Somehow I can't imagine the body hugging silhouette working with you know what attached, well, anywhere. Sigh. I guess I have to pass on this particular fashion moment.

But sometimes, on the other hand, the fashion stars do align and there are some sweet choices that can work for a diabetic gal such as myself. Take for instance, the rise of the empire waisted silhouette. Fabulous! I've always loved the look and now, thanks to the shifting winds of fashion, there are a myriad of fantastic options to choose from. Pretty dresses, luxurious sweaters, flattering blouses. They are comfortable, very sassy at the moment and guess what, thanks to the design of the garment, no pump is ever going to show it's clunky little face when I'm wearing it. I splurged and got myself an amazing cashmere, empire waist sweater this fall and I love it. I feel groovy and I love the fact that my pump isn't hanging out there like it usually does when I wear my basic jeans, sweater, tee uniform. I'm convinced. I'm looking for more. Because they work. Because I feel less outside of the fun of fashion when I wear it. Because, in the end, I feel better, feeling pretty and sassy and hipper once in a while.

I feel more whole today with my diabetes than I've ever felt before. Whole and normal. But still, that doesn't mean that sometimes I could feel just a little more so, thanks to a groovy, cashmere sweater.

another view of diabetes.

Isn't this a wonderful painting by tusconpics? I really love it. And I love that she posted it on the diabetes made visible pool to share with us all. And I love that this is happening. More pictures of other people's view of life with diabetes. More detail to the picture. And more access to the dimensional experience of life with this disease. Plus the chance to see great work and the rich expression of that experience like this. I'm so happy right now!