aiming for grace

thanks to kitty.

My great friend gave me this perfect birthday gift. In the first place, we call each other kitty for some unknown (and totally entertaining) reason. Secondly, I love hello kitty. And lastly, my friend "kitty" has been one of my most supportive friends in terms of my journey with diabetes. So this thoughtful gift was the perfect storm of all of those things, and more.

Being seen with diabetes has always felt like an interesting balance act for me. How much to share, how much to keep to myself. I don't want to be seen as the sick girl, yet of course, I face challenges others do not. This has posed some awkwardness in my life in the non-diabetic world because I'm not always the most graceful at finding the right balance. And also others who don't have diabetes can be clumsy without meaning to. So, as I've said a thousand times, blogging, the OC, finding a voice here, has all made such a difference in feeling more visible, and in turn helped enormously with that balancing act I face in the "real" world.

So it's because I'm feeling more seen here, that I am so touched by kitty's gift. Having a non-diabetic (albeit a highly considerate and attentive one) give me this gift represents such a new day for me. My diabetes is seen by my friend, understood, made personal, funny and sweet, all in the light of day. A girl's got to have a bag to carry her diabetes junk in, so it might as well be a brown and bright pink, hello kitty one, all things being equal. My sweet friend hit the perfect note with this gift, and in the process, helped me to see that I'm not as invisible as I used to be.

And for that I will always be grateful to kitty, because after all, that was the biggest gift of all.

"hey..."

beck keeps signing in my ear, "I'm a loser baby, so why don't you..." Well there's no need to go as far as the lyric goes, but regardless, it's what I feel because it's taken me forever to do it, but I've finally, officially signed up with the diabetes OC. What a loser, that it took me so long. I kept meaning to, forgetting, meaning to, forgetting again. Well I finally remembered and did it, so there it is. Officially. Gratefully. Happy to be part of this wonderful group of people who've made such a huge difference in my life.

diabetes pictured.

I have a love/hate relationship with technology. Especially with the ones that I have to wear in my body, but that's another story. This post is about the love side of technology. Check out this AMAZING app for the incredible site, flickr. Type in a word, like diabetes, and then watch the aggregate of all the photos from flickr that have the tag diabetes attached to it, appear before your very eyes. This is an amazing open source, democratic view of what people think when they add the tag diabetes to their photos. I think this is SO cool.

And of course, you don't have to just type in diabetes. Try flowers or birds or shoes. Oh my, there are billions of images out there, and some of them are very good. Flickr's a bit like Alice in Wonderland falling down the rabbit hole for me. But it's fun and it sure beats trying to watch CSI to relax!

tag, you're it.

Well it looks like I've been tagged thanks to scott. I've been out of town, so I didn't realize this until today. Sorry I've been so tardy!

5 random facts about myself:
1. The mornings are my favorite time of the day. The world feels full of possibility then. At night, not so much.

2. I love murder mysteries on TV. Miss Marple is the best, then Poirot, Inspecter Lindley Murders, Midsummer Murders, the list goes on and on. I prefer them British and in a series. I just love them. I'd watch them every night if I could.

3. I think that plain pasta with butter and parmesan is one of the perfect foods. I kind of feel the same way about toast with butter and parmesan. Obviously, it's the butter and parmesan combo that I'm enamored with. Totally perfect foods in my mind!

4. My favorite clothing items are white tee shirts, jeans and black shoes. I have way too many of all three.

5. Though I was badly bitten by a dog as a child, I love dogs with all my heart. Luckily, one bad incident didn't color my view of dogs forever. My dogs in particular and most dogs in general, bring me unending joy and happiness.

Everyone I would tag has been tagged, so I'm going to pass on passing this on. Thanks for the chance to share though.

Calvin's video.

I wrote the post pure voice a while back when an article, written by a ten year old named Calvin Kocher, was printed in my local paper. Well his dad wrote me then, to let me know that a film was going to be made about Calvin in the upcoming months. I just received a new comment from Calvin's dad today, to let me know that a short video about Calvin could be seen at google video here. It's wonderful. More accurately, I think Calvin is wonderful. And his dad and family are wonderful. And my god, Calvin's insights are so absolutely on the mark. Straight on, direct, eloquent, all in the voice of a very wise child. There are a number of poignant moments within the video, like when Calvin talks about diabetes being the hardest day to day disease, barring AIDS or cancer. Or the time when he says he would like to eat sometime, ravenously, without having to test or worry about insulin. But what got me the most was the very last sequence of the video, when Calvin talks about how every day, every drink, every number, every bolus, every crumb of food, every thing he does, matters. "I have to keep fighting, if I want to survive," he says. In 7 short minutes, Calvin sums up so much of what it means to have diabetes, purely, in a way that goes straight to the heart of the story.

Huge thanks to Calvin's father for sharing this video and Calvin's story with the world.

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.

being seen as dimensional.

Ok, so I'm in a better mood today. Yes, diabetes layers over everything. But most days that's managable. I realized that when I get the most blue, the most freaked out, is when there are too many health issues to deal with at the same time, too much choice, to much interconnectedness, too much to navigate. Do I go with traditional medical protocol for my shoulder or do I do acupuncture, yoga, pilates? How is my diabetes impacting other random health issues? Traditional medicine works for diabetes. But it hasn't worked great for the shoulders. Hm. And what happens when the non-traditional practitioner debunks the traditional methodology? Naturpathic vs. dietician? Synthetic meds vs. natural herbs? Help, I'm swimming as fast as I can. I can choose, but what if I choose wrong? It all feels so big and confusing and daunting sometimes.

But I discovered something yesterday, that I think is really going to help. I live in a city with a big teaching hospital, where I go to see my endocrinologist, gynecologist and any other random specialist I might need. Well, at my hospital they now have a new service offered through the women's clinic where, for a relatively small, non-insurance covered fee, I can work with an internist who will serve as a holistic caregiver as well as a knowledgable navigator and medical partner. They are available 24-7 to answer my questions and also help me navigate the labrynth of different doctors and specialists. They see me as a diabetic AND a woman. And they take the time I need to assess all the medical issues I face as well as help me develop a reasonable and effective strategy in moving forward. It's not that they take the place of my beloved endocrinologist or my gynecoologist, but rather, that they have the TIME neither of the others have to TALK to me about all the intricate, complex details I face. And they really understand what I'm talking about. They don't just see me as a shoulder or a pancreas. In a word, they see me as dimensional. And they can help with all the other wonderful people and information I have to intersect with on my health journey, to remember that that it is so. I can't believe this is for real.

Oh my god, I feel so relieved. I saw this wonderful, young physician yesterday and she spent an hour and a half with me, reviewing my full medical history. We talked about my concerns as a person with diabetes, who when dealing with other medical issues and specialists, I'm only seen through their specialty filter and not holistically. We talked about the fact that diabetes is always a layer. We talked about how complex it can all get. We talked about how tiring the process of dealing with all the details can be.

But now I have a knowledable advocate, navigator and partner. Now I feel less alone in the process, and as such, I feel less burdened. Less burdened. That alone is worth the price of admission, as far as I'm concerned. Add to that, the fact that the clinic also has an acupuncturist, naturopath and physical therapist on staff in addition to the traditional physicians, and well, I feel like I'm in medical nirvana. No more wondering if the two approachs will agree. No more worrying that one approach will be contraindicated by the other. These folks talk because they work together and respect each other. I just show up and we figure out what makes the most sense for my care. One stop shop. Talk about customer service! This is truly the first time I feel like I'm being seen for what I am as a patient. Dimensional, complex, interconnected. And because of that, I feel safer, less burdened and more likely to get the care I should.

Happy girl am I!

carrying it all.

Diabetics are a resourceful bunch. We figure out how to make all the stuff we have to do to be healthy diabetics, work within our busy lives. Like how to carry all our diabetes paraphenalia about. Kevin wrote a wonderful post about his love for his L.L. Bean rucksack and kindly called out my love for sassy bags in the process. Much thanks to him for the link as well as confirmation that I'm not the only one enamored with the little (and somewhat obscure) details of diabetes accessories.

And P.S., I've been thinking about getting a backpack and after reading Kevin's post, I'm becoming more convinced of the merits of this idea by the minute. If I do get one, I'm leaning towards this little beauty from EastPak, who's pattern is designed by one of my favorite print designers, Hanna Werning. Who says practical can't also be sassy, for those of who want that too?

house models.

I'm coming late to the House party, having just started to watch it this season. And I really like the show. It's smart, wonderfully written, a bit irreverent and basically a mystery, which I personally love as a story genre. What I'm also really appreciating, is watching the main character, House, struggle with the return of a disability that was supposed to have been cured by a surgery. It's not the pain or struggle I appreciate per se, but rather, that it is being played out on mainstream media for all to see. Visibility in media can mean a number of things. Acceptance, confirmation, inclusion. For those of us consuming media in the 70's, we remember that this was one of the key arguments raised when talking about race on television. Invisibility on TV meant African Americans were never seen beyond the accepted stereotypes and racist generalizations of the culture at large. Diverse characters, illustrating life beyond the stereotypes, allowed the viewer to see people as individuals, rather than as the one dimensional idea of who they were as a group.

And that's why I really like House the most. Last night, when he finally resorts to picking up his cane again, I literally hurt inside. They skillfully handled the internal struggle he was having between his deep hope that things had changed positively forever and the sinking understanding that in fact, they had not. I kept thinking as I watched the show, that some writer really got the subtlety of the internal dance that goes on between mind and body when the body is compromised. Though the character isn't a diabetic, the story felt universal to anyone dealing with that dance. Overall, it felt like a step forward to me. A hit show, who's main character's body is compromised, causing him struggle, frustration, pain despair and anger. He's not the nicest guy on TV, but maybe this insight into his physical struggle helps give some dimension as to why this might be so.

House is also a hit show that helps "normalize" the experience of physical challenges for the viewing audience to see and internalize on some level. And all this while he solves confounding medical mysteries that stump everyone else. Compromised body doesn't mean "less than" performance or skill. According to House, it means humanity and depth, which makes this show one of my new favorites to watch. That, plus the fact that I'd be happy to watch Hugh Laurie in almost anything.

2 more friends.

It's been a strange summer. I've gone 20 years without knowing anyone close to me who has diabetes. Yes, I've met people who have it but we've never become close friends. It just hasn't worked out that way. Before blogging I felt very lonely with this disease, a lot of the time. In my world, I was the only one who had it and so I was the only one going through what I had to go through as a diabetic. I often felt like I had my nose pressed to a window, me on the outside, watching a very fun party going on inside. I was just different from everyone else, because I had diabetes.

And then I started to blog and my world literally opened up. I found that there were others that dealt with the strangeness of life with this disease. They knew about the rituals, the rules, the disappointments, the struggles. And they had humor and courage and empathy and insight about diabetes. I felt understood and seen. I felt normal amongst these amazing people. I felt less lonely.

Which brings me to this summer. I've had two very close friends diagnosed with type 1 diabetes in the last 2 months. Both are intelligent, bright and positive. Both will do fine. I've tried to be there to support them, to get them connected with the right medical team, to help them navigate the first days and weeks and months after the inevitable avalanche of information that comes with diagnosis. It's been wonderful to help and I feel honored that they have let me. It's also been strange to see how much I know about living with diabetes, from the vantage point of someone who doesn't know a lot yet. And I have to admit, it's been sad for me too. Sad to see them from where I sit and know what lies ahead for these people I care so much about. They are still in the beginning stages of mastering all the mechanics and at this point, are feeling better because they have insulin on board for the first time in ages. They just feel better. And I know that bodes well for them in the coming months and years.

But that's just it. The fact that there are coming months and years of unrelenting diabetes management noise (as Kerri so eloquently framed up recently) ahead of them, just breaks my heart. Hopefully there will be a cure in the near future. Certainly the management technology will get better. But I'm so used to having diabetes that I just assume it's not going away tomorrow. When I was diagnosed I was told that it was a good time to get diabetes and in the next 5 years there would be amazing breakthroughs. And I heard the very same thing said to my 2 friends in the last couple of months. Well it's 20 years later and though the technology is better, in the end, I still have diabetes. My god, I hope that what they were told recently, will turn out to be more true for them than it was for me.

So after this summer, I do feel less lonely, thanks to the OC and now my two friends having diabetes. Less lonely, but not necessarily happy about it. The diabetes party is one I wish nobody had to attend. Though the people are amazing here, the cost of entry is pretty damn high!