aiming for grace

precious reserve.

Everybody has only so much reserve to deal with the annoyances and struggles in life. As I get older, the idea of my reserve as a precious thing has become clearer to me. Especially in light of my life as a person living with diabetes. Diabetes taps on a lot of my human reserve, some days more than others, but certainly to some to degree pretty much every day. For me the choice I see isn't whether or not to deal with what diabetes presents, but rather, with what level of grace and composure I can muster in dealing with it. And that's where that wonderful, little savings account of energy and wisdom comes into play. That's when I tap on my reserve. And usually, knock on wood, I can rally, or find comfort, or just take a nap thanks to my reserve. Yes indeed, a reserve is a very precious thing.

So what's recently occured to me is that precious reserve I have, is a thing to be protected and cherished. It's an important tool in my diabetes tool box that shouldn't be frittered away on silliness or wasteful things. Like unnecessary drama or people who drain my energy or situations that just won't pay off in the long run. I know these people and situations, and I'm realizing that if I choose to be there too much, I have that much less of my reserve left to deal with the dramas and situations diabetes will most certainly present at any given moment. My reserve is not endless after all. It can be tapped out. It needs to be replenished with energy givers and comforting experiences and just plain fun. I don't know why but this feels like a pretty big revelation and game changer for me.

Now I'm not so delusional as to think that all of the everyday annoyances of life can be avoided. Life has lot's of dramas and drama queens and kings that you just have to deal with. But what I'm just beginning to understand after 21 years with diabetes, is that where I can, avoiding the people and things that unnecessarily drain my reserve is a really, really good idea. Diabetes is unrelenting and unending. My reserve is not. Focusing my energy and time on taking care of replenishing and feeding it, means I'm better equipped to cope with all that diabetes throws my way. And that's something that can only be really good in the long run.

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.

opposites made whole.

In the spirit of living well with chronic illness, I've been thinking about what that end state actually looks like. When I look at the diabetes made visible pool, I am so moved by the strangeness of all the stuff we use to manage this disease, juxtaposed with the regularness of our lives. Weird medical objects and then our other life stuff. As I think about living in between the definitions of health and illness, I'm struck with the need to make a picture of what healthy with diabetes looks like for myself. I'm a visual person after all, so I want an image of the goal. Healthy with diabetes.

Healthy first. But with diabetes too. For me, there has to be an acknowledgement and visibility of what it takes to do this disease well. To do it at all. My picture of healthy with diabetes needs to include the reality of my life with this disease. It's not devoid of the blood tests and a1c's and carb counting and pumps. It's not as if I could be healthy without all that stuff. No, for me the picture includes that stuff and honor's all the hard choices and vigilance and determination it takes to do this disease with eye's wide open.

Because I'm a designer, the world of objects matter for me. Things, objects tell stories to me. As I've begun to think about this idea, I've gravitated to that world of things, to help draw myself this picture I'm in search of. This funny cup and this wonderful handmade toy are a couple of examples of what come to mind for me when I think about what healthy with diabetes looks like. It's a first step, and maybe too obvious in it's expression, but regardless, these things speak to me now. They're pretty and funny and delightful because they embrace medicalness (symbolized by the red cross) AND good design (porcelain and gold gilt; whimsical fabric and button wheels). There's a confident, happy presence about these objects. And they're special because they embrace what at first feels oxymoronic. Pretty and medical? Playful and serious? They embody opposite states to make a new whole. Like I do. Healthy and chronically ill. Opposites that when seen together in one place, are compelling and surprising. New forms. Modern forms. Opposites made whole.

Hm. Now that's an idea that helps makes the picture a little clearer.

(PS. I unfortunately have lost the links to the above featured objects. A thousand apologies to the designers who made them.)