aiming for grace

safe is normal

The catalog from the MOMA show SAFE: Design takes on Risk is a great read. Overall, its an interesting testament to the anxious times we live in. It also points out eloquently that safety and comfort are fundamental desires for us as human beings. I found this helpful to think about in terms of the nervousness or fear I somethimes feel about having diabetes. On the rare occasions something goes wrong, I am always surprised by how intensely and immediatly I fear for my safety. I have also found that my fear of the loss of safety is with me in most of the time, like a quiet whisper, informing all the preparations I make. It's not overt but rather subtlely threads itself through decisions and plans and my willingness to try something unchartered or spontaneous. I can usually override the worry but it is always there to contend with.

Paola Antonelli in her opening essay of the catalog states: "Safety is an instictive need that has guided human choices throughout history. Like love, it is an unversal feeling and, as such, has inspired endless analytical thinking and motivated science, literature, religion, and art. On our sleeves we wear not only our hearts but also big red panic buttons."

She also says some great things about the power of fear: "For every object designed with safety in mind, there is a corresponding fear. Conversely, for almost every fear, there is at least one object designed to allay the apprehension. Fear is a powerful motor of invention."

One of the biggest struggles I've had about diabetes, with both the medical community and the marketers who sell the stuff we have to use, is the use of the word and idea of normalcy. Normal this is not. Built into living with the regimen of diabetes is the idea of minimizing risk and maximizing safety through good planning and anticipation. Once all that is done, a normal life can be lived. What I've found is that normal chunks of life can be lived, in between the planning, the worry and the few actual times of real danger.

After reading Ms. Antonelli's essay, I now understand a little better, that even though my day to day life isn't exactly "normal", my response to it actually is. I also really like the idea that fear is a powerful motivator to invention and innovation. It's not that the fear goes away but rather that it becomes energy and fuel to create something wonderful. I like thinking about it this way.

the perfect diabetes travel kit

I just got back from a short trip where I ran very low on some medications that I need to take every day. It caused me a lot of worry even though nothing bad actually happened. I spend a lot of time trying to anticipate what might go wrong and plan accordingly to avoid inconvenience or worse. At the same time I resent that I have to do it at all. Both feelings are valid, but in the in end, it puts me in a situation that minimizes the overall fun and/or productivity of a trip by adding stress and worry to the trip. I'm sick of extra stress and worry. Diabetes is hard enough on it's own. I want to minimize it's negative impact in the ways I can actually control. So, my task today is to create the perfect travel kit.

I want to create the smallest, lightest, totally pre-packed travel kit that is left in the carry on case, even when I'm not traveling. I want less nervousness and forgetfulness the night before the trip, so I'm going to try to refill the kit for the next trip when I RETURN from the last as a part of the unpacking ritual. What makes sense to me to include:

Med Pack: enough medical stuff to last for 2 weeks at a minimum. Pump sets, reservoirs, insulin, clicker thing, extra needles, meds, glucose tabs and glucose gel, extra pump clip, test strips, extra meter, medic alert jewelery, Aleve, Tiger Balm patches for achy muscles, antacid etc. And a letter from the doctor stating I need needles etc. because I'm diabetic.

Tech Pack: phone charger, camera battery charger, computer cord, ipod charger, memory stick, extra batteries for my blood test moniter and pump. Get extra's of these to live exclusively in the travel kit.

Travel Accessories Pack: a set of light pajamas. A set of make up: mascara, blush, concealor. A toothbrush and toothpaste. Deoderant. Again, get extra's of these too, to keep in the travel kit all the time.

A back pack or carry on: to bring on the plane rather than check. Something I can carry my computer, reading material, ipod, notebook, wallet, tickets, stuff from my purse like my everyday diabetes bag with blood test machine, test strips, clicker, batteries, needle, insulin vial PLUS the perfect travel kit described above. And if it's a back pack, one that isn't too heavy. And ugly. This will be a challenge to find one that works well but doesn't force me to trade beauty for function. I'm willing to, but I won't be happy about it.

Once the perfect travel kit is figured out, then on to the overall "lighter, more efficient travel" concept. A wonderful discussion about this is on Russell Davies' blog. If anyone has any other things to include or great travel packing tips, please share. It's definitely a rich and relevant subject, and so much funner when viewed as a challenge, rather than a problem, which is something I need to try to remember on the resentful days.

Later that day:
Here's what I found. I'm pretty happy. It took a couple of hours but I really feel better knowing that I am prepared. One thing that worked really well was bringing all the stuff I need to pack with me to the store and actually packing it there. It wasn't theoretical. The solution worked because I really packed what I really need to take. I ended up with stuff (I think it's called the cube system) from Eagle Creek, which isn't exactly groovy looking but it works really well:

a packet for each thing: meds, tester/pump tech & support, tech, toiletries.

that all fits together into a nice, packable bundle.

I feel better already.

Lucky?

When I was diagnosed with diabetes, my doctor and friends told me I was lucky. Lucky because there would be a cure in the next 5 years (but there wasn't). Lucky because it wasn't cancer, which was true (but still it was diabetes). They were trying to focus on the upside of the situation, which I appreciate and understand. And it's not that they were totally wrong either. But as I get close to my 20th year with diabetes, I am keenly aware of how much my life has been altered by it. I have made difficult choices about my health, my body, my career and my personal life, to live well with this disease.

I am also aware that I am, in fact, lucky. Lucky to live in a time where there are so many choices around my care: with the advancement of the insulin pump, short acting insulins, better blood testing technology and access to excellent information that helps me manuever through life with diabetes. Lucky too, because I have still been able to live a life with adventures and achievement and pleasure and love. In short, I know that I am lucky because I have been able to live these last 20 years.

But diabetes has no cure. Multiple shots a day or living with a machine attached to you 24/7 is not a cure. Far from it. In fact I am actively engaged in staying alive, every day, several times a day. Alive but not cured. This engagement is what is meant when diabetes is described as "manageable". The idea though true, carries with it the tacite implication that the management of diabetes is simple and easy because it can be managed in the first place. And in turn, the fact that a manageable process exists at all, should be reason enough to feel lucky and "kind of" cured.

All of which is totally true and also not true at the same time.

My own experience with management of diabetes is one of jumping through a series of hoops and rituals to THEN get to live. I take my blood sugar, figure out the nutritional components of the food I am going to eat, then figure out my insulin dose and deliver it. Thats the routine, on the good days, at least 3 times a day, every day. And then on the more difficult days (because I am tired or I'm getting sick or I exercised too much or not enough or I am traveling or my meal is late or my bloodsugar is mysteriously out of control or I make a mistake, because I've done the routine a thousand times before) on those days, I have much more to juggle, calculate, guess. Every day a new set of variables layered on top of the unending routine. I guess you can call this process manageable but I don't agree that it is simple or easy. It's just a process that you get used to.

So in the end, am I lucky? I would answer most definitely yes and also, most certainly no. Life with diabetes has taught me that luck is in truth, a relative thing.

dogs do bite

Oh they look so cute. But even though dogs live with us every day, they are still wild things. We assume that our civilization and "modernity" is permenant, that our dogs are thoroughly tame. But nature can be unrelenting and definitive and raw. Hurricanes devastate, dogs bite and pancreas' fail. This frightens us and we imagine we can control the fundamental wildness or unpredictability of it all. We comfort ourselves by saying that life with diabetes is normal, that dogs off leash won't bite, that levees in New Orleans won't break. And though we make amazing breakthroughs that do improve life, uncontrollable wildness will also, always, still exist. Nature tooth and claw.