It's been a few days since I got off the sensor. I was supposed to be wearing it for 6 days but it went wonky on day 5 so after consulting with my nurse, I took it off. Though it never hurt while I was wearing it, it was amazing how relieved I felt when I removed it. I seemed to relax in a place that I hadn't known was tense. Deep down. Away from my brain. It's almost like my body has an intelligence of it's own, seperate from my intellectual, analytical mind. No matter how much my mind says, "this is good for me", my body, somewhere deep inside is saying, "get this foreign thing out of here". I exist in between my honest appreciation and desire for technological advances that will elevate my care on one hand, and my primal, physical resistance to the very same technology on the other. Which leaves me tired and conflicted. Both feelings are powerful and deeply compelling. Both tug at me hard. And there's no clear answer, just more choices and questions to navigate. It's good to have choices, but it's also very tiring sometimes. Especially when your mind and body aren't on the same page.
I just had coffee with my young friend who was diagnosed with diabetes back in September, just before leaving for his first year in college. And he's working at it, though it is such an adjustment. It's so strange for me to remember the beginnings of this journey, from the vantage point of 20+ years down the path. The technology is certainly better and there are promising advances in the wings, but still, there it is. The path of learning how to navigate all the new rules, the understanding of all the science, and then the figuring out about one's own particular body in relation to the disease. What eating a slice of pizza does to you. Or what exercising at this time of the day means in a couple of hours. All the countless details and vageries that make up this new life with diabetes. There it all is. Again.
I am struck, quite simply, with the courage it takes to do this. And the skill it takes to do it well. I see it with fresh eyes today, 20 years down the path, through the eyes of my young friend, starting at the beginning of his own particular journey with diabetes. It makes me sad and angry and frustrated. I don't want anyone to have to face this, but I especially don't want this particular boy to have to face it. I simply wish it wasn't so.
Yesterday was one of those magical days. Start to finish. It started out with a project I've been asked to participate in with some colleagues from work. A rebranding exercise for a local non-profit who works with childern who have cancer, their families and friends as well as the hospitals, doctors and staff who care for the child. They "fill in the gaps" between services offered by the hospital, other non-profits and the state. The woman who started the organization, lost her 5 year old to cancer many years ago and one of her ways of dealing with her horrible loss, was to build a place of comfort, joy and support for others who have to go through what she had to. She's created a remarkable organization, focused on joy. Their working principle is that whatever time anyone of their clients has, it should be filled with as much joy and happiness as is possible. So they bring music and musicians into the cancer ward. They connect kids with 'buddies' who hang out with them during chemo, play with them when their parents need a break, whatever the child needs. They provide a community and navigational tools for overwhelmed families. It's just a lovely and worthwhile organization.
So I was asked to help on this project, by a man I've worked with for many years, and whom I deeply admire. This man has always been such a support to me through my own journey with balancing diabetes and work. Supportive, safe and an advocate for me. So when he asked if I would help, I did not hesitate to say yes. But I have to admit that inside I was a little nervous. Nervous about getting close to such a sad and hard place. Apprehensive about feeling sadder, when I work so hard to find joy in my own life. And guilty that I was feeling these feelings.
After a bit of thought though, I realized that my friend had invited me to work on this project because of my own experiences with illness and disease. I realized that I had something to offer beyond my business and design skills. I had a special insight that though, not exactly the same as what this organization dealt with, had some shared aspects that could prove useful. My experiences with living with diabetes could possibly add to what my team had to offer this group. So though I was a bit scared, I was also excited.
So yesterday we met with the organization and it was amazing. It went so well and the project is very exciting. I brought my 20 things I know about diabetes book as well as my collage journal, to show a visual expression of one person's disease process. And people saw it and understood it in a way I've never experienced before. Plus the insights of living with disease well, did help in the project, both in credibility and understanding of the right tone needed. There is still a lot to be done, but we are off to a good start. And what an exciting and meaningful day!
I came home very tired but happy, excited to share all that had happened with my husband over dinner. My husband I discussed going to a nice restuarant and maybe a movie afterward, but in the end, we ended up just going to a local mexican restuarant chain. The food is pretty good but the atmosphere is basically cafeteria style. Lot's of tables, with people you don't know, eating close by. I sat down first while my husband was getting the food. I took out my hello kitty bag, pulled out my bloodtest meter and took a blood test. And then suddenly, a voice came from behind me. A young boy, probably around 8, bounced into view, exclaiming excitedly that "he had one of those too". I said "you do! Wow, we're just alike." He could barely contain himself with excitement. He told me how he had a couple of meters because sometimes they forget one. He told me how he'd been diagnosed a year and half ago and how "he was getting the hang of it". We talked for a few minutes and then his father came over and said how his son was always noticing people with diabetes. That he had been sad about taking his blood test and shot earlier that evening but now he was happy because he'd found someone else who also had diabetes too. He then turned to his son and said, "see honey, you're not alone". My husband arrived and we began to eat and again a voice came from behind. The little boy said from his chair, "you're having a burrito and I had a burrito and we're both diabetics!" And then he smiled. I said yes, we were a lot alike and I literally had to choke back the tears. After a while the family got up to leave and as they passed the table, the boy said goodbye. His father said thank-you to me for talking with his son and I said that no, it was all my pleasure. I then turned to the boy and said I knew that the bloodtests were hard but he was very brave and strong. His dad said to his son, "yes you are strong" and flexed his arm. And his son laughed and said, "dad, it makes me strong on the inside not the outside!" and giggled and was gone. Now I really had to choke back the tears.
Oh what a day! I still can't quite believe it. I felt so visible, connected, contributing, and recieving as a diabetic and a person. As a person with diabetes. As a whole person with diabetes. The day was about giving and recieving so much in return. And then in the evening, by just taking a blood test, getting the unexpected gift of connecting with such a sweet and wonderful boy. His joy in finding someone like him, his excitement in sharing all that he'd accomplished, and his wisdom in knowing that he was stronger on the inside because of all that he had to do with diabetes, truly moved and honored me. I've never had this sort of thing happen to me before, and how amazing that it did happen on a day that had been so focused on children and illness. It was just magical.
Yesterday, I learned a big lesson. By opening up to something that I was nervous about, by showing up to help others in need, by trusting my friend in asking me, by acknowledging what I have to offer because of this disease, by being open and sharing of my personal insights, I was showered with unexpected gifts and affirmation in return. By reaching out beyond my comfort zone, I was comforted in ways I never imagined were possible.
Last year I had the surprising experience of having a couple of people I know get diabetes. I also discovered in the process of getting to know a new friend, that she had diabetes. Three people I know and have in my life that have diabetes too. All in one year! And then there is blogging and the OC where I've met so many new, wonderful friends who have diabetes too. Nineteen years of utter loneliness with diabetes and then suddenly in one year, I feel seen and understood in a way I never have before. It's very strange and very wonderful.
Last week I got an email from my new friend telling me of her great A1c results. It was a short email and it nearly brought me to tears. That she shared her achievement with me. That I had a new friend who actually knew what an A1c was. That she'd done so well, which means she was taking care of herself, which is so hard and admirable. That I knew what an achievement her A1c was and could say so to her and celebrate with her. It was so simple and small really, but also so huge. A thin thread between she and I, based on a similar journey. I am less alone because I know her and she honored me by sharing her achievement. Less alone and more whole because my diabetes isn't so hidden anymore. What a gift!
And today, I'm going to meet my friend who got diagnosed last summer. We're going to this amazing little bakery to have a cookie and some coffee. We both know how to handle it in terms of our insulin and we're both psyched. Because we know we deserve it, we know how to deal with it and we're doing it with someone else who gets how cool that is. As I was hanging up from making the arrangements to meet, I said something about getting ready for an "insulin moment". We both laughed and after I was off the phone, I just smiled. I'm meeting a friend who gets the significance of insulin, the importance of carb counting and most importantly, the value of a trip to the bakery for a special cookie once in a while. She and I get that we need to have a treat once in a while as well as make an adventure out of it. Again, I'm so lucky that she gets it and I'm less alone in the process. And again, I have another gift to notice and celebrate!
I recently started the new category what helps here at aiming for grace. Many wonderful readers added their insights around what helps them in living with diabetes, which I greatly appreciate. I'm always blown away by the compassion, smartness and insight I gain from the diabetes community. Plus, the poetry. The poetry and beauty in peoples lives and particular viewpoint. Like this morning, for example. I was walking Ruppert and Flora just as the sun was rising. It was cold and a bit windy, but oh, it was so beautiful. I looked up in the sky and I realized it was the lovely blue that minnesota nice mentioned in her recent comment. "When the sky is still that beautiful, indescribable blue". The indescribable blue. I love that. And now I'm looking for it, early in the morning, noticing it just a little bit more. And guess what? It really does help. So thank-you kathy, and everyone else who shared their thoughts and insights and stories.
And thanks to just guessing for this great photo of morning sky, which I am borrowing, because of course, I didn't have a camera with me to capture a photo of the indescribable blue sky...
I love this photo from beth at tusconpics from our diabetes made visible pool. What makes this a diabetes photo? Can you tell? Look on the left hand, bottom corner of the yellow paper. See the blood smudge? There it is. The detail that makes it diabetic!
It's an example of an idea I've had about diabetes for a long time. That diabetes is a disease is about blood. Blood sugars, blood tests, blood smudges. A number of pictures in the pool are of stuff that's been marked by bloody fingers, post blood test, like here and here. It's funny because it's so normal to me but now I see it through other people's images and I realize how iconic it is to diabetes. Another diabetes pattern revealed through pictures instead of words. I don't know why, but it comforts me. Actually, when I think about it for a second, I do know why it comforts me. Images like this show me visually, that I'm not alone. They show me that other people have blood smudges in their lives too. Little red dots that connect us all.
Isn't this a wonderful painting by tusconpics? I really love it. And I love that she posted it on the diabetes made visible pool to share with us all. And I love that this is happening. More pictures of other people's view of life with diabetes. More detail to the picture. And more access to the dimensional experience of life with this disease. Plus the chance to see great work and the rich expression of that experience like this. I'm so happy right now!
Nice people who read this blog, have asked for a link to my photos on flickr, which makes me blush. So here it is. To the left. Under archives. For what it's worth.
And also, art sweet has smartly asked for a diabetes made visible pool button for us to display on our blogs. I've figured it out on typepad, but I'm not sure that I can make a universal one for everyone to use. We probably can and I'm just niave, so I'll confer with my technical wiz (and much younger) friends and get back to you on that one. In the meantime, look for one on this blog soon. Baby steps, right?
This is what I came home to tonight. My sweet husband put up lights and as I approached the house, I realized they were actually our pretty, sparkly trees in the distance. It made me purely happy.
I've been thinking about something that chrissie in belgium pointed out from my last post. I had mentioned that I wanted to save up the times I felt good and place them in pretty bottles, to use when I'm not feeling as good. Well she wisely said that maybe the point isn't to save the good stuff in the blue bottles, but rather to NOTICE the blue bottles a little more in the first place. And she's right. Noticing more of the good that's around, everywhere, is really a great way of keeping the balancing act a little bit more on the positive side.
So here's to noticing more, like the wonder and delight of simple white lights on a tree in winter. So lovely. And thanks to chrissie for the reminder.