aiming for grace

a grinch moment.

Pardon me, but I need to indulge in a little grinchy griping for just a moment.

I'm kind of hating the fact that the impending holidays are all about sweets and food and sugary excess. I get the traditions and the cultural reasons why we stack plates high with sugar and candy and treats. I understand the "why" of all the food. I also understand the temptation to test what I know will happen if I "taste" a few too many of those treats at every turn, at every social occasion. I get what's going on because I've been here 21 times before. I also know I'll get through, that blissfully the platters of temptation will disappear soon enough, and it'll be that much easier to stick to what I know works for me. But today, on December 3rd, I realize that I'm feeling a low grade tension and resentment and grinchiness about the weeks of treats and temptation ahead. For now, I'm bummed that I need to sit myself down and talk through what's ahead and how I need to avoid the temptation that leads to the inevitable rollercoaster ride I know so well. For now, I'm wishing it was January 3rd and all this sugary, holiday sweetness was behind me.

I'm sure I'll feel better tomorrow. In the meantime, thanks for the grinchy indulgence! (example of lovely sugary temptation via sweet paul)

understanding more.

My husband just got back from a long vacation with friends. For a number of reasons I didn't join them on their adventure. Some of the reasons are just regular reasons around schedule (I needed to be at work at the time they all could get away) and preference (8 people in a condo isn't exactly my idea of fun) and energy (lot's of plane rides and lot's of time to get there). Check and check. The other reasons were more diabetes related, having to do with ability (I can't scuba dive as a diabetic on the insulin pump) and reticence (I've had bad experiences in the past with people around being seen as pushy and a drag because of the schedule and regimen I need to follow with food and exercise) and a general lack of energy around a big vacation like this one (to plan for all the details of travel and all the unknowns of a new place). And then of course, there was the ever-present fact that I didn't want my diabetes to stand in the way of his fun. I hate that idea and worry about it quite a bit. How to navigate a partnership in light of the unending presence of diabetes is at times challenging. Not insurmountable, but definitely challenging. Like vacations for example. There's more to think about in our case than when you don't have a chronic illness to deal with, that's for sure. In the end, all of this added up to us deciding that he would go and I'd stay home. On paper it made sense, but like so many things, the plan and the experience can be very different.

Throughout the 10 days my husband was away, I found myself vaguely angry and uneasy. It honestly wasn't that I was angry at him. No, it was something else, but I just couldn't put my finger on what. Which didn't make sense to me. We'd talked about it and we'd decided that this was the best solution. What was the deal then? Why was I so out of sorts?

When he returned we sat down and talked about it all. No anger, more from a healthy curiosity and mutual desire to make it better. After much discussion, what it basically boiled down to was 2 things. Hurt and fear.

In the first place, I felt left out, pure and simple. Off they went without me, doing stuff I couldn't do, checking out in a way I could never check out. They were able to not only take a vacation from the daily grind, but also a vacation from diabetes. A vacation from diabetes. Wow. The idea is almost unimaginable. It was something I want so profoundly and something I can never do. I so wanted to be a part of their group instead of mine. Yep. I felt left out in a big way.

The second thing we discovered in our discussion was that I also felt afraid. I was afraid that if I'd joined the group, in a circumstance that required them to spend 10 days with me and my diabetic life, they wouldn't have understood and consequently wouldn't like me anymore. Worse yet, I feared that my husband would decide that life was so much better without having to deal with diabetes on a day to day basis, that he too wouldn't like me anymore. Given the choice to live with diabetes or not, I could imagine a person, even one that loved me, running screaming for the door.

And it's not like my fears are unfounded. This has happened to me before. It's been a long time since then but the memory of it's devastating impact on me is clear and sharp. Until my husband and I talked about it though, I didn't realize how much it was still impacting me. I thought I had moved on, but clearly I hadn't. Even though this was a new day with new players and even though my husband wasn't this other man, I was projecting my painful experience and consequent fears on this present event. Ok, so now I understood a bit more about what was going on here.

Wow! It felt like we found a diamond of an insight. Hard but precise and in a strange way, beautiful. It's an insight that both my husband and I can work with. Diabetes and the fear of rejection. That's not one you read about in the manuals you get from the doctor. No that's one you don't expect to have to experience on top of having a disease, but unfortunately you can. Being different, being misunderstood, being seen as difficult or selfish or demanding when you're actually taking care of your disease, can have real and profound ramifications. Trying to balance the desire to fit in and the need to take care of yourself, can develop into a real reticence to try new stuff or risk joining in again. Feeling safe and understood isn't easy with this disease. It takes a lot of explaining on my part and a willingness to listen on the part of others. And this experience has taught me that sometimes even I don't know what's driving my feelings. In that case, how can I give people the clues they need if I don't see them myself?

So what we're going to do after all this, is take some time to figure out the best vacation that works well for us both. Something that will be fun and relaxing and healthful and easy. And yes, something that might stretch my comfort zone a little in terms of adventure and unknowns. We're going to talk about it more beforehand and not make assumptions without checking in with each other. With a little effort and a little exploration, we're going to go on a vacation. Sometime soon, some relaxing fun will be had by all. And I can't wait!

This experience reminded me, yet again, that living my life with this is disease is a process. A journey, as a person coping with a very difficult and complex disease, as a person dealing with all that is not understood by others, as a person so vulnerable to the vageries of this disease and in turn, the kindness of others. A kindness that is demonstrated to me every day. And a kindness that sometimes isn't demonstrated and can boil down to insensitivity and cruelty. In the end, it's a process of searching for and finding a few safe people and a place to just be. In the end, it's about learning and trusting and starting over and building and taking care. Of myself, my relationships and my health. For me, that's the best I can do.

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.

being prepared and gentle.

I'm in New York City on business for a few days. I arrived yesterday after a long flight from the west coast. Luckily it was non-stop and even though I was stuck in the middle seat, it was a relatively pain free flight. I actually like flying, once I'm finally through all the security lines and stuffing of bags above my head. I like the quiet, uninterrupted time to think and listen to music and read.

It's kind of a rough time with my diabetes lately as I've posted about a few times. I was thinking about that on the plane. I was tired because I hadn't slept well the night before, trying to plan for all the inevitable unknowns of a trip. I know that sounds lame, and I'm embarrassed to admit it, but after 20 years of living with diabetes, I know that there are lot's of possible "situations" to contend with when traveling. No food served on the planes anymore, so pack a lunch. The set your changing doesn't work so it's important to bring lot's of extras, just in case. Extra food is needed for extra walking or the low that just happens because you're out of your rountine. The list goes on and on, and I try to be prepared. And then there's the extra burden too of traveling for business. Sometimes I'm with work friends who understand all the issues I face with travel and diabetes, other times not. The last thing I want is to have my diabetes be front and center on a business trip. The last thing I want either, is for something dangerous to happen. All these crazy lows lately have been scary enough at home in my own world. Add to that restuarant food, wonky schedules, more exercise, time change, fatigue, and well, you know the drill. There's a lot to consider. So I try to prepare for all the contingencies, though of course, that's impossible. You can't prepare for everything. And so I admit it. I worry (ok, so partly that's my personality, but it's not totally out of line, considering). I project what I imagine all the possible scenarios could be. I obsess the details. I feel so responsible about managing it all, as best as I possibly can.

Once I arrived yesterday, I met my new great friend for dinner. She has diabetes too. Longer than I have had it. We were catching up and I mentioned that I was having a rough time lately with my diabetes and without prompting, she said "it's just that way sometimes, isn't it?" She just knew without me having to explain. Two friends, having dinner, no need to explain the details. It's just a fact. "Diabetes is just this way sometime." And for some reason, having someone else just know that, deep in their bones, lifted a bit of the weight of the huge sense of responsibility, worry and guilt I feel (just like the kind and supportive comments on my blog from my great OC friends). The state of things are the same, but thanks to my friends knowing comment, I realized how harsh I was being on myself. In a flash, it dawned on me that it was time to be a bit more gentle. Thanks to my friends simple, heartfelt knowing of my situation, I realized I could be prepared and gentle, all at the same time .

brave thoughts.

I found this funny, old book while I was packing up stuff from my basement for my new studio. Most of the quotes inside are what you'd expect, but I still love the title and all that it promises. The book of courage. A little book of brave thoughts. I like the idea of having a little book of brave thoughts on those days when I loose my courage or feel burdened by diabetes or tired from this long journey with chronic illness. "Keep your courage up, and conversely, it will keep you up." Ah, they say that hope floats and according to this little book, courage, it seems, does too.

with fresh eyes.

I just had coffee with my young friend who was diagnosed with diabetes back in September, just before leaving for his first year in college. And he's working at it, though it is such an adjustment. It's so strange for me to remember the beginnings of this journey, from the vantage point of 20+ years down the path. The technology is certainly better and there are promising advances in the wings, but still, there it is. The path of learning how to navigate all the new rules, the understanding of all the science, and then the figuring out about one's own particular body in relation to the disease. What eating a slice of pizza does to you. Or what exercising at this time of the day means in a couple of hours. All the countless details and vageries that make up this new life with diabetes. There it all is. Again.

I am struck, quite simply, with the courage it takes to do this. And the skill it takes to do it well. I see it with fresh eyes today, 20 years down the path, through the eyes of my young friend, starting at the beginning of his own particular journey with diabetes. It makes me sad and angry and frustrated. I don't want anyone to have to face this, but I especially don't want this particular boy to have to face it. I simply wish it wasn't so.

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!

Calvin's video.

I wrote the post pure voice a while back when an article, written by a ten year old named Calvin Kocher, was printed in my local paper. Well his dad wrote me then, to let me know that a film was going to be made about Calvin in the upcoming months. I just received a new comment from Calvin's dad today, to let me know that a short video about Calvin could be seen at google video here. It's wonderful. More accurately, I think Calvin is wonderful. And his dad and family are wonderful. And my god, Calvin's insights are so absolutely on the mark. Straight on, direct, eloquent, all in the voice of a very wise child. There are a number of poignant moments within the video, like when Calvin talks about diabetes being the hardest day to day disease, barring AIDS or cancer. Or the time when he says he would like to eat sometime, ravenously, without having to test or worry about insulin. But what got me the most was the very last sequence of the video, when Calvin talks about how every day, every drink, every number, every bolus, every crumb of food, every thing he does, matters. "I have to keep fighting, if I want to survive," he says. In 7 short minutes, Calvin sums up so much of what it means to have diabetes, purely, in a way that goes straight to the heart of the story.

Huge thanks to Calvin's father for sharing this video and Calvin's story with the world.

keeping it together.

This is a chicken or egg kind of thing question.

I know that I have pretty "controlling" personality. I dot every "i" and cross every "t" when it comes to something I'm working on. I care about the details. And I've done well by that quality in most parts of my life. And then there is diabetes, where we are told that "good control" is the goal of all that we do. There's that word again. Control. So that's how I approach my diabetes, and I've done pretty well by that quality again. It's most certainly not always perfect, but I maintain good A1C's, live a productive life, minimize diabetes' impact as much as I can.

And then there are all the other things about life that happen. On top of diabetes. On top of your job. Other health issues that pose there own challenges. Family stuff. Life stuff. You can't control everything, nor do I want to. But I realized last week, how much effort I make, to keep it all going. And when there is another health thing to contend with, more of my energy has to go to just managing. I go inside. To figure out the next steps. To calm my understandable nervousness. To tease out the information that I need to understand and consequently make a knowledgable decision. Luckily, nothing is life threatening. Luckily, it doesn't all have to be decided today. Medical people have to be talked with. Information has to be gathered. Details have to be explained. And that takes time.

People on the outside don't know what I'm going through on the inside. And I don't want to always have to lead with my health issues, for them to understand. Especially at work. But I realize that when I'm dealing with more things on top of all that I deal with everyday with diabetes, it's easy for me to appear distant. Or distracted. Or short. Or controlling. I realized this week, that sometimes more than others, I'm working really hard at controlling what I can, so that I can keep it all together and moving forward. Health stuff is so challenging sometimes. And with diabetes as a constant layer, the "event" related health stuff can appear a lot simpler than it actually is. Other people see it and say, oh bummer, but you'll get better. And they're right. To a point. They see the one thing and forget about the diabetes because I "do it well" so it recedes from view.

Which is fine. It just means that sometimes I feel like I'm running so hard to just navigate my health. I think I need to learn how to carve time out for myself at these times. To process and focus and protect myself. Time to rally. Time to take a deep breath. Time to get ready and go. Again.

So back to the chicken or the egg question. Am I a controlling person or do I have to be controlling to manage all the stuff on my plate? Who knows. If people say I'm a controlling person, I guess I can't really control that. I have to know that I'm doing the best I can. I have to know it and let it help me. Especially at times like these.