diabetes considered

It's a new day.

Hello all! It's been a long hiatus. Rather than taking up where I left off on Aiming for Grace, this new blog will focus more on ideas around chronic illness and challenges associated with it. I'm particularly interested in the psychological side of life with disease, with a focus on living the best life possible regardless of Diabetes. Or perhaps, because of it. Life with Diabetes and chronic illness offers a very particular journey, frought with unique issues and opportunities and I'm interested in understanding it better, if I can! Which means looking into the latest research about human behavior and new insights into the mind as well as exploring how people cope with health issues through creative expression and the arts. Where before in my last blog, I was focusing on coping personally, I'm not interested in collecting smart insight and examples to help me braille my way through this process. I accept what is, in terms of having this disease. I'm now more intersted in using it as a jumping off point for deeper understanding and insight.

Additionally, over the past few years I also become aware of the power of the narratives I tell myself about my journey with disease. I'm more and more interested in the idea of using story to literally change my experience with Diabetes. In other words, I'm deeply curious about the power I possess to move beyond simply coping to living fully and well with Diabetes.

Insight, story and creative expression. I hope that these ideas will drive the content of this new exploration of life with chronic illness. That's the goal at least! I'm excited to see how it all turns out!

art heals.

Art heals. Or at least it reframes the narrative, takes back control of the conversation to some degree, makes it our own. The idea of controlling our own experience with chronic illness continues to intrigue and pull at me. I think art may be one of the best answers to not feeling like a victim here.

Case in point, a recent show at the Augen gallery in Portland, by artist Jim Riswold, called art for oncologists. Though the work itself isn't necessarily the type I'm normally drawn to, the collective pieces come together to tell a compelling and moving story. One persons' harrowing journey with disease . One very smart and articulate persons' journey, I might add. It gave me courage to see the courage it took for this one, singular artist to make this work. So brave and raw and clinical and intellectual and utterly stripped down, all at the same time. So angry and cynical. So poignant and frail. This is one very pissed off and humbling narrative. I really related to the underlying rage and panic of this show.

I'm still thinking about the talk and the accompanying written explanations of the work. I'm still grateful for it's fierceness and honesty. I'm grateful for it's exploration of medicine and disease and of being a patient. I'm still grateful for the creation of a public place for open discussion about disease. It felt familiar and known and somehow I felt more at home there than I've felt in years. And for that, I'm more grateful than I would have ever guessed!

Again, I'm convinced that art is the answer. Or at least one of the answers to deal with life with disease.

It takes grit to do this well!

 

Self conrol and the ability to stick to a process or project over the long haul, or grit, as research psychologist Angela Duckworth calls it, seems like a key factor in maintaining good Diabetes control over a lifetime. I've heard of  Dr. Duckworth's work before and am excited to see that it's getting recognition and further investment via her recent MacArthur Foundation "genius" grant. I would love to hear her thoughts about grit and compliance in relation to the long term challenges of life with a demanding chronic illness!

More about Dr. Angela Duckworth's research here.

The Human Trial

2013 Abelcine Documentary Grant - The Human Trial from Vox Pop Films on Vimeo.

I found this trailer to a documentary about Type 1 Diabetes, The Human Trial on the OBEY site a couple of months ago. I like the authentic, no holds barred tone of this trailer. The director of the documentary, Lisa Hepner, has Diabetes which doesn't surprise me. No smooth, glowy marketing messages here, thank you very much (think all the pump company images of happy people running on the beach we have to endure). I can't wait for the movie to come out! I'm also grateful to Shepard Fairey for sharing it. Lot's of eyes on an article posted on a massively popular blog means more awareness. A great documentary that tells the inside story means deeper connection. "We believe that stories are the most powerful vehicle for social change,” Lisa said. “Witness the impact the documentary, The Inconvenient Truth, had on climate change. Films expose, enlighten, and educate — and have the potential to drive meaningful action." Always a good thing!

Quandary of Hidden Disabilities - Conceal or Reveal? - NYTimes.com

"Discrimination against the disabled is most often an unintended effect of acts or omissions undertaken without considering the impact on people with disabilities. Put bluntly, the problem is not so much that people are mean, but rather, that people are clueless." Amen. via www.nytimes.com

The Mental Strain of Making Do With Less - NYTimes.com

This recent New York Times article about Eldar Shafir and Sendhil Mullainathan's new book, Scarcity: Why Having Too Little Means so Much absolutely blew my mind. It describes beautifully the ongoing state of "limited bandwidth" life with Diabetes creates. As I read the article I kept thinking "insert Diabetes into this or that example and you've got what it's like to deal with Diabetes on a day to day basis"! This is a crazy important concept! It's yet another piece in the story that confirms for me that this disease has such a profound impact beyond just the physical!