aiming for grace

thinking about grace.

I've been thinking about the subject of grace over the past couple of days. After reading Kerri's moving post no title, I've been feeling quiet. Like I want to find stillness and silence so I can think. To figure out the unknowable, if I can. To understand why difficult stuff happens to obviously good people. Dedicated, focused, up front, brave people. I want to understand why we got this disease. And once we got it, why it has to be so challenging to manage it. And once we learn to manage it as best we can, why complications can still happen? No matter how hard we work at it or "follow the rules", there is still no guarentee that we are in the clear. Why is that? Why?

Well no answer comes. I don't think there is a real answer to that question, unfortunately. Because it isn't a cause and effect proposition. I am reminded of an article in the New York Times Book Review that I read over a decade ago. They were reviewing a book by a woman who was writing about having cancer and she was quoted as saying: "what will happen can't be stopped. Aim for grace." For me, that is the answer to the question. Aim for grace. I cut the phrase out of the paper and I pasted it into a book where I make collages about my feelings around my life with diabetes. I've been doing it for years, way before blogging or the oc existed, in an attempt to make it real. To create a picture of it, a record of my particular journey with this disease.

"What will happen can't be stopped. Aim for grace." It reminds me that I can't help that I got diabetes, but I can affect how I live with it. I can be vigilant with my care. I can do my best. And still there are no guarentees about the outcome. I hear myself saying to my doctor, to myself, on my blog, "am I doing well enough"? I read others ask the same question. I tell myself that I will do the best I can on the things that I can control and celebrate the WAY I approach this as much as I can. I will see the grace in my approach. And I will call it out when I see it in others.

Now I have more pictures and examples of other people's grace with diabetes. There is Kerri who was the first voice I found, and always articulates her journey with generosity and courage. Always. After reading her post, I wanted to give her the prettiest mirror I could find, so she could see how graceful she is, and take some small comfort in knowing that. There are Amy and Scott and Kevin to name just a few, who on their blogs, share everyday their grace, honesty and presence with this disease. Or there is the new voice of jerusha who found me through my other blog dear ada, and who's beautiful, graceful post captured so many of the feelings I have around diabetes. There are so many others, too many to list, who inspire me and buoy me up when I am sad or burdened by diabetes. So many voices who show me what grace looks like. So many people, in there willingness to share, show me a path, and for that I am eternally grateful. Aim for grace. I feel so blessed knowing so many people who are doing that very thing.

how noisy is it today?

It's interesting how the volume of diabetes can dominate and recede.

Sometimes its noisy because the disease itself demands atttention. My control is wonky. My diligence is wavering. Whatever the reason, I must address myself to the requirements of the game. Tweak. Adjust. Regroup. Focus. It comes with the territory.

And then there are the times that diabetes feels noisy and it isn't because of anything particularly diabetic that's going on. It's the layering phenomenon I've mentioned before. Other stuff, physical or otherwise, PLUS diabetes, adding up to lots to manage and more to deal with. At those times, I just feel burdened and admittedly, a bit sorry for myself because of the PLUS factor. "I have to deal with X, and as usual, diabetes too." I think those times are the hardest for me because I have the burden of dealing with whatever is on my plate as well as the burden of feeling sad, angry or just plain tired. Heavy shoulders, heavy heart. Not so fun.

What's the most interesting (and wonderful) though, are the times when the noise of diabetes recedes. There are times when I don't notice it so much. There are times when everything is pretty much ok, and my shoulders and heart are light. There are even times when diabetes feels a bit like a virtue. A badge of honor. A source of pride. Because I do it everyday with focus and integrity and good intentions. Some days the results are better than others, but regardless, I also show diabetes respect. On those days when I do notice that it isn't so loud, diabetes is a layer in my life where I can see my strength and character, and as a result, give myself some credit for doing as well as I do. I like those times the best. The quiet times when I notice all that it takes to do this disease well and say, "yes, I do pretty well, all things considered."

It is interesting how the volume of diabetes can dominate and recede.

the upside to inside.

I have never had a good friend who has diabetes. Of course, I've met people who have it, but unfortunately, a genuine friendship never naturally developed. Until the OC, I really knew very few people with type 1 diabetes. It was weird and lonely. But now things are better because of the OC and blogging.

Recently, one of my good friends was diagnosed with diabetes. Such a hard thing to see someone I care about have to go through. I was glad to be a part of her early days of navigation through the tidal wave of information, new process', tools, techniques and changes. And she has been so brave and open and willing to do what it takes to adjust to all that diabetes means to her life now. I am moved by her grace and courage.

I'm also amazed at how different it is, to have a person who I can comfortably talk to about this life with diabetes, face to face. Already, there is an insider shorthand that she understands. It's almost errie to NOT have to explain all the details about timing or bloodsugars or food, when we're out to dinner or hanging out. I used to feel like being diabetic meant that I was no longer a part of the "normal people's party". But now, with my friend and all the people I know from the OC, I'm thinking that even though the diabetes "party" isn't a place any of us want to be by choice, I couldn't think of a better, braver, more inspiring group of people to be with if I tried.

the courage of others.

Yesterday on this american life I heard Julia Sweeney talk about her experiences with cervical cancer. It was very funny and very disturbing, all at the same time. She delivered the monologue in this hyped up, frantic way, laughing nervously throughout, which added a deeper feeling of tragedy to the already dark, gallows humor of the piece. I'd seen Julia Sweeney's amazing movie, "when god said ha!", a number of years ago and I was again struck yesterday, with admiration for the courage and rarity of her voice, or any voice for that matter, in speaking of the surreal aspects of dealing with disease and medicine. Of course Ms. Sweeney's particular experience with cancer is very different from mine with diabetes. And yet there are also broad similarities. She starkly and eloquently, without any sugar coating, spoke to the bizarreness of being placed in the world of medical procedures, protocol and treatment (all with the additional terror of a life threatening disease). It was both comforting and shocking to hear her story expressed so plainly and truthfully, all in the light of day.

I remember when I was first diagnosed, being shocked by the world I had entered. I couldn't exactly pin down when I'd moved from one side of the curtain to the other, but it was very clear that I had crossed into a different world, pretty soon after I was diagnosed. Suddenly there was a new language to learn and a new set of rules. Things that I had never known existed before, were now critical to my survival. "Did this Alice in Wonderland world exist all the time and I just didn't know about it before?", I remember thinking. And of course, the answer was yes. Yes it had, for thousands and thousands of people before me and many thousands after me. It's a strange world we inhabit. Strange and invisible a lot of the time.

And so that's why I'm grateful to Julia Sweeney's "this american life" piece and her movie because though I don't necessarily like seeing what she has to show, I'm so comforted to know that someone else has brought their experience to the light. Through their voice. And for that, I applaud her and am very grateful.

* A note of caution. The "this american life" piece with Julia Sweeney, is very explicit in its subject matter and descriptions of treatment.

pure voice

Here's a terrific article written by a 10 year old boy who has type 1 diabetes. What I love most is that it demonstrates so clearly the work it takes to do diabetes well. I am so grateful for all the amazing knowledge and technology that we are armed with to live our lives well with diabetes. But it is not a cure and this article highlights that so eloquently through the voice of a wise and courageous child. His straightforward account of what he lives with every day helps shed a clearer light on what every diabetic lives with every day. And bringing more light to this often misunderstood disease is no small accomplishment! Even as I read it, having done what he does every day for so long, I'm still moved by what it takes to do this disease well. This boy's account helps me to see again, the reality of the experience of life with diabetes as I see his. And it also makes me very sad that he has to go through this at all.

Day in the life of a diabetic is lived strictly by numbers
Health - Ten-year-old Calvin Kocher has to do a lot of work keeping up with his dietary needs, but it doesn't keep him from engaging in typical activities
Saturday, May 06, 2006

CALVIN KOCHER
Editor's note: Calvin Kocher, 10, is a fifth-grader at Cooper Mountain School in Beaverton. In 2003, when he was 7, Calvin was diagnosed with Type 1 diabetes. He is a Portland ambassador for America's Walk for Diabetes, which takes place today. Here, Calvin describes a day in the life of a diabetic.

Picture yourself like this: You're very thirsty, you're always hungry, you have blurry vision, have lost weight and suddenly have urination problems. You go to the hospital, and your doctor says you're diagnosed with diabetes. Then you go to sticking yourself with a 1/4-inch-long needle 50 times a week.

That's what happened to me and more than 20 million people all over the United States of America. Are you scared now? Wait until you see our average days!

My day starts at 2 o'clock in the morning, even though I'm not awake. My dad comes in and tests the amount of sugar I have in my blood. Oops: I'm high. See, the normal range is 80 to 180. I'm 274. I have a portable IV that I carry in my pocket called a computerized insulin pump. It gives me insulin -- a hormone I need to stay alive -- constantly throughout the whole day. It's connected by an infusion set.

To give an example, insulin is like a drawbridge that connects the red blood cells to sugar wanting to get in. The insulin "drawbridge" lets the sugar in, which is then converted into energy. However, when you have diabetes, you don't produce insulin, so the sugar can't get in over the drawbridge. When your drawbridge is up, the cells are literally starving all the time because they are in need of glucose, even though your blood is thick with it. The body wants to wash out the extra sugar, and so you need to drink and go to the bathroom a lot. A lot can go wrong when that drawbridge isn't working properly, so my pump puts in insulin regularly via my infusion set. This constant input of insulin is called a basal rate.

So, back to our 2 a.m. blood check. Since my blood glucose is high, my dad gives me enough insulin to get it in range. You figure out how much insulin to inject by subtracting your goal from the high blood sugar and dividing by the patient's correction rate. My goal is 135 and my correction rate is 50. So 274 (my reading) minus 135 (my goal) equals 139 (the amount I need to come down). Then he takes the 139 and divides it by 50, which equals 2.78 units of insulin. So, he programs my insulin pump to inject that much insulin into me via my set. This extra boost of insulin is called a bolus. Everything is normal and peaceful -- until morning comes.

Today is a Saturday, which means it's a soccer game day. The game is at 11 o'clock. I wake up at about 9:30, get my contact lenses in and head downstairs for breakfast. I read the paper as I test. Oh, look, Phoenix won!

Beep-beep-beep! That's my meter. I'm 146. Perfect! I'm having two waffles (30 carbs), honey (15 carbs), butter and milk (15 carbs). So, 30+15+15 = 60 grams. My breakfast ratio is 1 unit of insulin to 10 carbs, so I bolus 5.75 units, because I'm going to be burning a lot of carbs with all the exercise at the soccer game. Then I eat, bolus and we head off to the soccer game.

As we get there, I take off my sweat suit and head off to warm up. Then, just before we take the field, I test. I'm 131. Normally, this would be perfect, but since I'm going to be exercising, I drink some Gatorade and jog onto the field.

At halftime, I test again: 187. Good! I don't do anything. But later in the half, I feel low. You know what it feels like to be low? It's like running a marathon with only water to quench your thirst. You'd feel woozy, ready to drop and ravenous, right? That's what it feels like to be low. So, my dad calls me off the field. Yikes! I'm 39! I quickly slurp my whole Gatorade, and 10 minutes later, after testing to affirm that I'm at a good level again (107), I go back on the field to savor the last five minutes of a 6-2 win.

At the end of the game, I test again. Oh, good! I'm 156, so I can eat the after-game snacks: fruit punch and a bag of chips. I will need to bolus for them. So, 30 carbs for the juice and 15 carbs for the chips is 45 carbs; on a 1:15 midday ratio, that's three units. I bolus, and then, because I was exercising, I activate a setting on my pump that, for a short time, lets me reduce the basal rate of insulin my pump puts in. This is called temporary basal rate. The basal insulin is the amount of insulin that my pump puts into my body continuously. My normal basal rate is about .8 units per hour.

In good spirits, we go to Outback Steakhouse for lunch. I order a steak, a baked potato, diet Dr Pepper and a sundae. Then, after we order, I test: 126. When the food arrives, I bolus: 60 for the potato and toppings, zero for the steak and the soda (they are carb-free) and 60 for the sundae. On a 1:18 ratio, that's 6.67 units. So I bolus, and we dig in to our food like stray dogs at a deli.

At 3 o'clock, I go outside to eat a Popsicle and grab a bag of pretzel/cheese sandwiches and relax in the hammock. This is a snack I don't have to bolus for. I look forward to it every day. Eating without testing and bolusing: It seems so normal for everyone else, but for me it's a luxury.

At dinner outside, we're having creamed corn, my mom's really good deep-fried potato slices and steak. I rack it all up. My number's a bit high -- 324 -- so maybe I shouldn't have had the Popsicle. Anyway, 324 minus 135 equals 189, and 189 divided by 45 equals 4.2 units, plus the meal. Milk's 10 carbs, potatoes are 50, creamed corn is 30, steak is zero and a Fudgesicle is 15; that makes 105, divided by my dinner ratio, 1:20, is 5.25 units plus the 4.2 units from earlier, which makes 9.45 units. It's a lot of insulin, but that's what I need. I bolus, and we eat.

Later, right before I go to bed, I test. Terrific! I'm 110, so I eat a half a banana (15 carbs) so I won't go low overnight. Then I go to bed, waiting for yet another eventful d

knowing without being formally introduced

I read the biography of Jenni Prokopy on her site chronic babe today and was so impressed. I wanted to say yes, yes, you are wonderful and sassy and smart. And that's without even knowing her. I mean "know", in the "nice to meet you", handshake kind of knowing of a person. I found about the chronic babe site from an entry on the wonderful six until me blog which I discovered on the great blog diabetes mine which I found on google when I typed in dear ada, my own sites name, just for fun. What a wonderful coincidental discovery through a random surf. I had looked for diabetes chat rooms and blogs before but had never found any that I liked until I stumbled onto diabetes mine and the OC.

In reading chronic babes biography and Kerri's terrific blog, as well as all the others (and the kind comments I've received on my fledgling blog), I have found a normalcy and comfort that I have been searching for these last 20 years. The magic of living in this time of technologically enabled connections is that these everyday acts of courage and strength are shared, seen and celebrated by a larger understanding community. And my life has been deeply enriched, in such a short period of time, because of this. I don't feel as "less than" because I live with a chronic illness. I see through the words and journeys of others that we are, indeed, whole. Whole and healthy and funny and all bearing witness to this challenging yet still wonderful life. I feel like I've been given a tremendous gift and for that I am very grateful! Thank you, thank you, thank you.