aiming for grace

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.)

healthy in between.

The longer I have diabetes the more I feel like I live somewhere in between. In between how the world defines sickness and health. In the last few months I've had a number of people say to me that they don't think of me as having health issues because I'm so energetic and full of life. They think of me as healthy. Which I am. Healthy, with diabetes.

I'm glad that's how they see me, don't get me wrong. I strive for vibrancy and try to lead with my whole self rather than my disease. Having said that, I've worked incredibly hard at finding the right visibility for my diabetes, first to myself and then to the world around me. There's too much stuff I have to do as a diabetic to just get to square one. I'm not going to erase that reality just to fit in or pretend that I'm like other people who don't have diabetes. The dance therefore becomes one of balance, of what to show and what to keep private and quiet. I never lead with my diabetes, mainly because that's not how I primarily see myself. But the fact is that diabetes is inextricably a part of me and has deeply and profoundly effected who I am. I don't lead with diabetes, but I don't hide it either.

What I've struggled with lately, is because I am healthy with diabetes, when I do reveal a diabetes challenge I'm experiencing, it often goes unheard. Or worse yet, is dismissed because "I'm so healthy". It doesn't come up a lot, but when it does, I often find that I need to reiterate the issue a number of times before it's noticed. It seems the world sees people as either sick or well and what I'm realizing is that I'm neither, and both. Neither wholly one nor the other, and both, to a certain degree, all the time. Good days and bad ones. In control and not. Up and down. With diabetes it's never static and so, the usual definitions of health don't really describe my life.

And that can leave me feeling invisible or inauthentic or left out or alone at times. And that never feels good.

So what I'm working on is how to find the right tone of voice, the right volume, the right balance of lead and reveal. I'm certainly not there yet, but I'm working on it, which helps, suprisingly. My goal is to be fully whole, fully present to myself and the world around me in terms of my diabetes. My goal is to be fully healthy and vibrant in this life in between.

fitting in, giving in.

The desire to fit in can subtly turn into a pressure that tempts you to do stuff you might regret later on. Like yesterday when I showed up to a party and was suddenly face to face with a plate full of cupcakes I'd avoid under any other circumstance. Wanting to fit in can mean something as small as eating a cupcake because it's a birthday celebration and who wants to pass up being a part of the crowd at a time like that? It can mean eating a cupcake even though I know I shouldn't.

I know that it's no one's fault. Other people shouldn't have to change their parties or meals for me just because I'm the odd person out. Just because I'm the one with diabetes. And usually that's ok and it just doesn't matter in the great scheme of things. Usually I can pass on the cupcake or plates of dessert and celebrate with the best of them.

But sometimes not. Once in a while I succumb to the pressure I feel to fit in and enjoy the dessert just like everyone else. And sometimes I simply succumb to the temptation of that sweet cupcake right there in front of me. That sweet cupcake that I'd have never considered otherwise, had I not wanted to join the party in the first place. Suddenly I want that sweet cupcake, no matter what the consequences.

Well, no matter the consequences, at that moment. Later on, when the celebration's over and I'm dropping to 50 because I've over bolused in trying to cover for the cupcake, and then rebounding to 350 an hour after that, I'm pretty sure I'm the only one at that particular party. At this point I know I don't fit in because though I look like everyone else on the outside, inside it's a bloodsugar roller coaster, and I'm the only one there experiencing the ride.

It's also at this point, I'm not so sure that chasing the dream of fitting in this way or succumbing to that 3 minutes of sweet cupcake heaven is ever really worth it. Maybe it is once in a while, maybe not. I'm not really sure. What I do know is that I've done this dance before and I'll probably do it again. Fitting in, joining in, diving in, giving in. What does that mean with diabetes? What does that mean for me?

And again, I'm not really sure.

saving up for a rainy day.

 

Things are finally getting a bit more predictable again, thank goodness. Nothing a little radical change in your insulin dosage can't fix. Lot's less insulin during the day (and significantly less insulin reactions as a result) and lot's more insulin in the night (which unsurprisingly means less highs as a result). You know, totally flip what's worked for the last 2 years. Logical results to an illogical change. Why have my insulin needs changed so profoundly? Why now? I just don't know. I can't fathom a guess. It's yet another unsolved diabetes mystery. But at least it's better. Honestly, that's all I care about. I've been thinking a lot about what helps during times like these. I realized that when I'm actually in a time like I've been going through, it's pretty hard to remember what will actually help. I'm tired, I'm frustrated and I'm worried. Not really the best mind space to conjure up ideas about how to feel better. It's kind of counterintuitive. So what I'm thinking of doing is starting a "what helps" box. A place where I can gather ideas around what helps me in tough times. One thing per index card or scrap of paper. Over the next few weeks, I'll look for a lovely, special box to keep the cards in. And then on those challenging days, during the tough period, I can go to my box and draw out a "what helps" idea at random. Get a massage. Take a nap. Watch a Miss Marple movie. Get a pedicure. Take a picture of the cat. Listen to music. Walk the dog. Take another nap. Take a day off. Write a truthful, sad post. Whatever helps. It will be fun to add to the box as ideas come to me, especially those that occur when I'm feeling good. Ideas that I can save up for a rainy day. Ideas that will help me through the inevitable tough stretches ahead. We'll see how it turns out. It's bound to help a bit. And that's all I'm looking for. A little help on a rainy (or snowy) day!