aiming for grace

yes and yes.

 

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

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

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

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

there is much to be grateful for.

It's been a couple of weeks since I've posted here. I keep asking myself if there's something I want to write about vis-a-vis diabetes and the answer keeps coming up no. Not no emphatically or full of emotion. Just a quiet no, like there's nothing much to say about it right now. Which a good thing quite frankly, because it represents a new level of acceptance and equilibrium around the subject of this disease in my life. Diabetes still rocks and rolls, it still messes with my plans and my day but for some reason that fact doesn't seem to upset me quite so much lately. And I think that is, in great part, because of being able to write this blog to a caring audience and in return, receive such kindness and support from so many people out there. This blog started out as a voice in the dark and what I've found over the past few years is a place of great warmth and lightness and comfort. Which I carry with me everyday, which means I'm less frantic about it all for longer periods of time. It's not to say that I want to stop writing this blog or that I won't need to use it to rant or grieve again, but for now, for this period I feel a new level of peace I've never experienced before. Peace, acceptance and though I'm still sad about all diabetes means and brings to my life, it seems to weigh a little less heavily on my soul these days. Which is, quite simply, a great relief.  

And for that, this quiet, lighter period, I am forever grateful to everyone who has read this blog and commented and sent strength and validation and kind wishes when I've needed them the most. Oh yes, there is much to be grateful for!

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.

#13 : lightening up really helps.

It's been an emotional week. I finally found out the next steps in my medical saga that started a couple of weeks ago. Luckily it's not urgent, but there's still some stuff that needs to be done, which I'm really not looking forward to. The details don't really matter. It's the fact that I am facing more stuff that really got me down. Meltdown, crying in my beer, feeling very sorry for myself kind of down. Feeling burdened and unfairly picked on by the universe. I have diabetes for god's sake. Why do I have to deal with this too? Or shoulders? Or other stuff? Isn't the diabetes gerbil wheel enough for one person?

I understand these feelings. I think a good cry can be a great thing. And I'm even grateful I know what I'm going to have to do in the next month or so. All these feelings are true and justified and valid.

#13 : lightening up really helps.
I woke up thinking about this idea this morning. Lightening up is not one of my natural strong suits. I tend to the serious. To lighten up is an act of will for me at times. Truth and "real experiences" resonate deeply for me, and the idea of just "lightening up", seems kind of fake or pollyana when I look at the phrase at face value. But what I've discovered is there are many truths, often which appear opposite, yet both remain true. Diabetes is hard. Other medical issues arise. My body is aging. Yet. Yet. Yet, it's a beautiful late summer morning, ready to be enjoyed. Today. Yet, I have two dogs who always make me smile. Who love me unconditionally. Who really want to go on their morning walk while I'm sitting here typing. I have two truths in my hand today: one is I have more medical stuff to deal with in addition to diabetes and that's tough and two is that it's a beautiful morning and I have dogs who'd love to be with me walking around the neighborhood. It's not that one's mutually exclusive of the other. But one can take the forefront. The first truth is not going away. But why deal with it today? And how much can I really "deal" with it anyway? I can worry, though there really isn't much to worry about. I can feel sorry for myself, but that doesn't give me anything except more sadness. So today I'm choosing lightness. I'm going to enjoy the adventures of today and remember what I already know, which is that lightening up really helps! An idea, by the way, two very impatient dogs couldn't agree with more.

making it real.

I'm a designer by profession, and as such, I'm a big believer in the power of things. Objects communicate, tell stories, collect meaning. A tangible thing in your hand feels real and substantial. Having said that, the web is also an amazing tool for meaningful communication, connection and comfort. The OC has changed my life in such a positive way. Regardless of being a virtual tool, the insight, inspiration, comfort, support and realization that I am not alone with diabetes has utterly improved my life.

For me, the exercise I did a couple of months ago to commemorate my 20th anniversary of living with diabetes, was very important. I don't think it would have had as much meaning if I had just done it privately on my own. 20 things I know about diabetes, really helped me to move through a milestone in a way that surprised and comforted me deeply. The format, the simplicity and the "safety" of doing the exercise as a blog within a community of people who have been so supportive and also, "get it", made the doing of it possible. Once done, I felt better. But the designer in me wanted something to touch and hold and feel, so I decided to make a small book out of the blog. I had the original files I used to make the posts, printed them out (with the help of a friend more experienced in book layout and production than I) and then took it to a local book bindery to have 10 copies made. They arrived a couple of days ago and I'm so excited. There is something so cool about being able to hold the exercise, done on the web, in my hands. I'm giving them to my doctor, family and the friends who have made the most difference in my journey with diabetes. And that feels great too, to give them something tangible as a thank you for all that they have done for me.

I think that making something tangible from all of this stuff we deal with around diabetes, can be very helpful. In reading the comments on Scott's recent post operating under pressure, there was a comment by Minnesota Nice that I thought was brilliant. She is writing down every positive thing she does around diabetes, and for each "thing" she takes a lego block and adds it to a structure of lego's she is building. By doing this, she sees her progress, she notes her efforts and success', she makes her work and dedication tangible. I think this is fabulous. Once she goes through all the lego's she has, she takes a picture of the creation, and then starts again. Boy would I love to see those pictures (sounds like a wonderful book to me)! Brilliant!

The point is, making something real out of all this can be very good (#7 diabetes is a great source for creativity). A blog is real but you can't touch it. It may be enough and that's terrific. Taking it further into another form, can be fun too. Whether it's publishing an iPhoto book of images that mean something around diabetes, or publishing your blog using a program like blog binders, or painting a painting or building lego towers, it really doesn't matter what form it takes. It can be affordable, creative and personal, shared or not. I'm just saying that making my 20 things blog into a tangible, touchable book, has made it that much more meaningful to me and others.

next.

So there you have it. 20 things I know about diabetes. I have to say that this has been a surprising and gratifying process. My goal was to mark the milestone of 20 years, to notice it and commemorate it in some concrete way. Finding the right words, or the right circumstances to share hasn't always been easy, but over time I've found (and am still finding) a voice around what this process has been for me. This wasn't an exercise in the definitive truths about diabetes for the world. It was at it's essence, a chance for me to say what I know about diabetes so far, to myself but also to an "audience". The fact that others could read what I thought and agree or disagree was a factor that really changed the weight of the exercise for me. But as I did the project I realized too that not only had I earned my own particular point of view about diabetes over the last 20 years, my voice was just that, one singular voice about one life with diabetes. Important and not so, all at the same time.

I learned a lot by doing this project. What surprised me most was how many positive things I know because of diabetes. I vowed that I would not edit what came to mind in the process, so if the things I know from diabetes were dark or sad, so be it. And of course, there are those entries and they are critical. I would be lying if I didn't say how much diabetes tires me out, makes me sad, forces me to choose things I would rather not do. But then there was the realization that with diabetes I had also learned to ask for help from others, that lightening up really helps and that one small thing, a kindness, an advance in technology, the discovery of the OC, can make all the difference. I'm not saying that diabetes is ok or that I'm better off because of it. Rather, though I knew before that there were gifts that came with the struggle, in doing this exercise they became much clearer and more weighty. And that really helps to balance out the obvious and known weight of the hard things. (#17: diabetes is a study in balance)

One of the results of looking at the disease as I did for this exercise, is again seeing the very real impact it has had on my life. Yesterday, I woke up kind of sad thinking about having diabetes for so long. What would my life had been like without diabetes, I wondered? What could I have done with all the energy and focus directed at something other than blood sugars or shots or A1C's or carb counting or pumps or worrying or explaining or being pissed off or tired or frustrated? At first I thought, "I could have been so much more". And then, after a bit of time for self pity, I thought, "or not". Because I just can't know what my life would have been without diabetes. I can't know that I'd be different or better off and one of the upsides of this exercise, is that I can see more clearly now, some of what I actually am because of this disease. (#20: aim for grace)

On one of the nights I was working on an entry, my husband after looking over my shoulder briefly, said that each entry could be a story on it's own. Nice thought, but I have a full time job already. But in that spirit and as a way to start the NEXT 20 years, I do want to focus on one idea that I was pretty surprised by. #19: there is much to be grateful for. That most certainly wasn't my first thought when I started the list to do this project, but over the course of the postings, it kept bubbling up for me. Gratitude. Diabetes has taught me so much about gratitude. The importance of it, the healing qualities of it, the good that comes from it. Noticing all the gifts that people and animals and the world gives me, because of, and in spite of having diabetes, has become so critical to me in finding joy and happiness in life. This is one that came later in my time with the disease. I was devastated, overwhelmed, angry, sad and very afraid for a long time. And then over the years, as I came to accept the reality of my situation, I started to see all the things that people and the world offered me. And then I started to accept the gifts more readily, and diabetes became a little easier to handle still. So in light of this realization, I'm writing some thank you notes to my husband and mom and dear friends and wonderful doctor for all that they have done to make it better. I will also thank my animals who have, and continue to bring such joy and comfort to me. And I also want to thank all the people I have "met" from the OC, who in such a short period of time have made such a huge difference in my life. The words, the thoughts, the effort, the wisdom, the intelligence and courage, continues to inspire me every day.

So, that's what I know today about diabetes. Thanks for listening. We'll see what tomorrow brings.

twenty.

nineteen.

eighteen.

seventeen.