January 7, 2013

Type 1 Diabetes + Food & Body Issues + Social Media + Creativity = VIAL Project

I’m 18 months into my doctoral program, and so far so good. It still feels like an eternity until I’ll be done… hoping for 2015, but more likely, I’m guessing 2016. Either way, I’m trying to not focus too much on when I’ll be done with the program, and looking more short-term at completing each assignment and project as they’re due. The big project I will tackle beginning in the fall is my dissertation, but before that, I have to complete a smaller research project, a pilot study, which will be the foundation for my dissertation.

When I decided to return to school, I knew I wanted to study diabetes and art therapy, but was unclear about what direction to go until last spring when I committed to researching diabetes and eating disorders. As someone who is recovered, I have years of experience attesting to lack of knowledge, awareness and sensitivity, insufficient treatment options, and what I have often perceived as an utter disregard among too many healthcare providers for just how easy it is to get all screwed up over food and body image when you have diabetes. I now feel a moral, ethical, personal, and professional obligation to address those problems I experienced as a patient, problems that too many other people with diabetes have also experienced, problems that are preventing many people from overcoming the food and body issues that plague them.

VIAL Project

That brings me to my pilot research project: VIAL Project.

VIAL is an acronym for Voice ~ Insulin ~ Art ~ Life, and VIAL Project combines some of the building blocks of my diabetes advocacy work – social media, creative self-expression, and food and body issues – into a social networking website for people with type 1 diabetes, and food and body issues to share original, arts-based work (art, photography, creative writing, video, etc.), and connect with each other online. Because this is a research project, I will be collecting and analyzing user-submitted content, including all creative expression, posts and comments, to identify themes that emerge. My objective is to increase understanding of website users’ experience: having type 1 diabetes and food and body issues; creating and sharing arts-based work on the website; and using a social media platform to connect with others who have type 1 diabetes and food and body issues.

For the sake of this project, food and body issues cover a range of behaviors and experiences, including: overeating; stress eating; eating to avoid hypoglycemia; insulin omission or manipulation; restricting food; feelings of dissatisfaction, anxiety, anger or depression about one’s body; anxiety about food; binging; purging; use of medications such as diuretics, laxatives or weight loss supplements (not approved by a healthcare provider). Food and body issues can be mild to severe, including: behaviors and feelings connected to food and body image, causing mild to moderate psychological distress, with minimal interference with one’s daily functioning, possibly affecting diabetes management; disordered eating that is more significant, causing some disruption to daily functioning, affecting diabetes management, and posing some health risks; clinical eating disorders, diagnosed by a mental health professional.

If the results of this pilot research are promising, it is my goal to develop my dissertation research based on the results, and continue using the website as a platform for conducting research. The research on diabetes and eating disorders has grown over the years, but there is so much room for new understanding, and a great need for investigation into how to help people.

It is also imperative that more is learned about how to reach and engage people with type 1 and food and body issues because the shame and distress they experience can lead them to isolate themselves, avoid healthcare providers, and be secretive about unhealthy food and diabetes management practices. This is actually one of the primary reasons I wanted to create a website for my research, as opposed to doing more traditional clinical research with participants in person. I hope those people who might be reluctant to participate in research in person, might be more willing to participate online. I hope my research will offer new insight into these areas of need, in addition to shedding light on the qualitative experience of individuals with type 1 who struggle to make peace with their body and food.

Since my data will consist of user-submitted content, without content, I have no data. Without data, I have no research, and without research, I will have to shift the direction of my doctoral work. I am very passionate and invested in studying this topic, and I believe there is great potential for this research to not only help people in the long term through development of interventions, but more immediately, I think a dynamic community that encourages and promotes the use of creativity to cope with the difficulties of having type 1 diabetes and food and body issues could potentially benefit users of the VIAL Project website.

The success of this project depends on people registering and participating on the website, so I’m looking for the DOC’s support and help with their wildly effective viral power. First, if you have type 1, you are at least 13 years old, and you have any food and body issues, as described above, I hope you will register as a user, and participate on the website. If this doesn’t describe you, but you know someone who might be qualified, I hope you will share the project information with them. Lastly, regardless of whether or not you feel like the site might be helpful for you, I hope you will share the information because maybe one of your FB friends, twitter followers, blog readers, or other DOC connections are struggling to some degree, and this is a resource they can use. In addition to the actual project website, VIAL Project also has a presence on Facebook and twitter, which isn’t much to see yet, but in time, I hope they’ll be a reflection of the activity on the website.

I have until late spring to collect my data, which isn’t a generous time frame to build a social network, so I’m reaching out to anyone and everyone I know to put this on the fast track. The more people that register and use the site by late spring, the more data I will have to support my more in-depth dissertation research. The getting-started, getting-people-interacting, and getting-people-making-and-posting-creative-work parts of this project are going to take a big push, but I hope that if you join me in promoting this research, the website will come to life, my research will come to life, and in time, each person who is struggling with type 1 and food and body issues can create the healthful life they deserve.

VIAL Project

VIAL Project: Voice Insulin Art Life

Informed Consent

Like all research, the protection of participants is my priority. If you are interested in joining the site and participating in the project, you are strongly encouraged to carefully review the Terms of Service on the website, which include Informed Consent. By joining the site, you are agreeing to the Terms of Service and providing Informed Consent. By agreeing to the Terms of Service, participants understand that:

• I am volunteering to register and participate on a social media website with a focus on creative expression for people with type 1 diabetes who have disordered eating behavior.

• I will be submitting original, creative works that reflects my experience with diabetes and/or food and body-related issues.

• I am responsible for protecting my identity when submitting public content on the website, including, but not limited to profile photo and username, to the extent that I want to remain anonymous.

• User-submitted content, including posts, comments, profile information, visual artwork, creative writing, audiovisual materials will be used anonymously for purposes of supervision, presentation and/or publication.

• Participating on the website may bring up feelings, thoughts, memories, and physical sensations, either comforting or uncomfortable. I can participate on the website to whatever degree I am comfortable. If I experience significant emotional distress, I know that I can refrain from using the website. If my emotional distress is severe and I feel I am in danger, I have been advised to contact local emergency services in my community.

• This study may or may not benefit me. I may experience increased self-knowledge and personal insight that I may be able to use in my daily life. The results of the study may also help to increase public and professional awareness of the needs and experiences of people with type 1 diabetes who have disordered eating.

• All confidential information collected at registration that is not public will be kept on a password protected computer in the researcher’s possession for possible future use. However, this information will not be used in any future study without communication from the researcher and my electronically submitted consent.

• The researcher/therapist is ethically bound to report, to the appropriate party, any criminal intent or potential harm to self.

• I may choose to withdraw from the study at any time with no negative consequences.

May 14, 2012

Getting Creative to “Find a Friend”

The first time I signed up for a blogging event, one that stipulated I blog every day for a month, I succeeded. Since then though, every time I sign up for any sort of blog-everyday-for-however-long event, things unravel quickly. Most recently, and most lamely, I signed up for WEGO Health Activist Writer’s Month Challenge in April, and completed a total of zero posts. I knew going into it that I wouldn’t be able to blog every day, but I had thought I could at least do a few days. Not impressive, I know, unless you’re impressed by complete hang-my-head-in-shame failure.

Blogging everyday for a month is clearly not for me, but blogging every day for a week is something I think I can manage, and potentially accomplish, so I signed up for the 3rd annual D-Blog Week, which starts today. D-Blog Week is organized by my dear DOC friend, Karen at Bitter-Sweet Diabetes. I love to support my DOC buddies (especially Karen!), and I love how D-Blog Week is a great opportunity to connect and share above and beyond the usual DOC activity.

Today’s prompt is as follows:

It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends. With that in mind, let’s kick off Diabetes Blog Week by making some new connections. Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!! Let’s all find a new friend today!

Needless to say, one of the reasons I haven’t been completing blogging events is that I don’t blog much anymore. I’ve transitioned the focus of my online diabetes advocacy work to Diabetes Art Day and the World Diabetes Day Postcard Exchange, partly because I don’t have much to say anymore that I haven’t already said, and partly because I think those are more unique ways I can contribute to the DOC. I like having this space to write an occasional post when I feel inspired though, as I did yesterday, but I can’t do this regularly anymore, and won’t even pretend otherwise. I’m really grateful that some people still like to pop by and read when I do post though because even though I don’t say much here, it’s nice that people are still willing to listen.

Unfortunately, my D-blog reading has become almost as disappointing as my D-blog writing. In my experience, twitter is the best way to discover new blogs, but my tweet action is sporadic. I join #dsma chats when I’m able, but it’s very infrequent that I pop on just to tweet it up. What can I say? Twitter is a lot of work, and when I used it effectively, if you want to call it that, it was a massive time sink. I simply can’t do that anymore which means I’m not “meeting” new DOC’ers like I once did, and I’m not discovering new D-blogs.

I’m not even good at staying on top of the blogs I used to read regularly. My system for blog-reading these days generally relies on people posting links on Facebook. If there’s a link to a blog post in my newsfeed that catches my eye, I’ll go read it. I know it means I miss a lot of great blogs, so it’s far from perfect, but my “Facebook system” works for me better than driving myself nuts trying to read every single diabetes blog. As you can imagine though, my system is not especially conducive to finding new blogs.

So it comes down to this. I don’t have a diabetes blog friend to share with you, at least not one you don’t already know. Maybe I’ll discover some this year as a result of D-Blog Week that I’ll be able to share with you next year. For now, I’m going to go a little rogue, and share some fun art-making blogs with you. I know that’s not the assignment, but perhaps you’ll find some inspiration there, inspiration that you can use to help you with your Diabetes Art Day project or your World Diabetes Day Postcard Exchange postcard (it’s never too early to start!). If you ever have the opportunity to do creative projects with kids, maybe you’ll find some ideas to have a fun art-a-palooza. Maybe you’ll get inspired to do something creative just for the sake of your own personal creative growth. Maybe you’ll have a diabetes-themed spark of creativity that you’ll share with me so I don’t feel quite so terrible about taking liberties with the D-Blog Week prompt today.

PaintCutPaste and PaintCutPaste on Facebook:
A super neat website by an art therapist and mom who shares art projects that are fun for kids and adults. From her site:

“my initial goal for this site is to share with parents, caregivers, and teachers various ideas for creative activities to do with kids. as this blog grows, it expands to include ideas to nurture the creative drive that lives within each of us, as well… our kids help us to remember how much fun playing with art can be, and sometimes it’s fun to take your turn with the paintbrush or sewing needles! i hope this site brings you and yours inspiration and plenty of beautiful paint cut paste messes!”

Art Journaling as a Creative Process and Art Journaling as a Creative Process on Facebook:
This site hasn’t been updated in about 6 months, but the posts conveying the benefits and describing techniques of art journaling are timeless. Have a look through the archive, and discover the true magic of this art form. I love this site, and offer it as a resource to the students in my Intro to Art Therapy course, so now I suggest it to you too. As a bonus, most of the techniques are very adaptable to postcard-making… just sayin’…

February 4, 2012

The Value of Art

If you’re reading this, you likely know something to the effect that I’m a type 1 diabetic and an art therapist whose professional and advocacy work is directed towards helping people with diabetes through art. Towards that goal, I facilitate Diabetes Art Day and the World Diabetes Day Postcard Exchange, I have a small art therapy practice, I spread my passion for art through Facebook, and to a much lesser extent, blogging and twitter, and I’m working on my doctorate with plans to do research on art therapy for people with diabetes. I do all of this because I believe in the healing power of creative expression for people with diabetes.

Sometimes I’m overcome with doubt though, not in the potential for healing through art, but in my ability to effectively demonstrate that potential such that others understand its true value. The reality is that no matter how much I believe that creative expression has the amazing capacity to heal people with diabetes, if no one else believes it, then my efforts, art projects, advocacy, and use of social media to promote art for healing don’t amount to much. The other reality is that I need to make a living, and let’s just say I’m not exactly raking in the piles of money. I thought that if I stuck with advocating, if I poured my heart into these projects and the work that I do, that eventually I could cover my own costs, plus pay a few of my gazillion copays, but so far that hasn’t happened.

So I’ve been discouraged and increasingly questioning how much time and effort I’m dedicating because it’s not fair to my family to continue chasing this dream at the expense of more practical things. I’m discouraged because I don’t know how to continue the work that you know me for at the level I’ve sustained. I need to reevaluate my vision, and alter my course, or at least change my pace. I’m not sure yet what that means for my various advocacy activities, but as I figure it out, I’ll let you know.

Despite this need to reassess from a practical standpoint, I will never stop believing in the infinite healing value of art for people with diabetes. Until there is a cure, there is healing through art. If you haven’t discovered it for yourself yet, a real treasure awaits you.

October 23, 2011

33 Reasons to Celebrate

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August 31, 2011

Last Minute Diabetes Art Day Ideas

Tomorrow is a big day, and an ultra busy one for me too. My first paper for school is due, and I’m not done yet so that’s my number one priority this morning. My second year of teaching Intro to Art Therapy to undergraduate students starts tomorrow, so it’s back to school for me. On a less positive note, last night, out of nowhere, I got a stabbing pain in my big toe which doesn’t want to subside, so tomorrow I’m going to the podiatrist. Jason and I both examined my toe, and couldn’t find any evidence of injury, but hopefully the podiatrist will make it better. Then in the evening, I’m leading a journal-making workshop!

Lastly though, and of tremendous importance, tomorrow is Diabetes Art Day! I know I said I was going to try to offer a couple of posts between my last post and the big day, but the aforementioned paper and preparation for the course – and that pesky hurricane – have swallowed my time these last few days. I at least wanted to offer a last minute idea for those of you who either want to participate, but aren’t sure what to make, or those of you who are still undecided about participating… pretty please, with Splenda on top, join the art party!

Mandala

Mandalas!

Mandala is supposed to mean circle in Sanskrit. The circle, as basic as it sounds, has been used for healing, spiritual and ritualistic purposes across cultures for thousands of years. It’s a symbol of wholeness and unity. More recently, it’s a form that many art therapists like to use with patients and clients, and there has been some art therapy research evidence that suggests creating mandalas reduces anxiety. If you would like to browse some examples, The Mandala Project is a great website where you can read more about what mandalas are, and view a gallery that’s sure to inspire you. In fact, after reading my suggestions for creating your own mandala below, if you still feel like you don’t want to create something, you can print a pre-designed mandala, much like a coloring page, and just color it in.

If you would like to participate in Diabetes Art Day – and I dearly hope you will – and you want to do something relatively simple, this is a great project. You’ll need a dinner plate to trace, and a piece of paper that’s big enough to trace the plate. You’ll also need, at a minimum, some kind of drawing materials, so if you don’t have art materials at home stop at a drugstore, grocery store, Target or Wal-Mart, and pick up a box of crayons. If you need a work surface, get some drawing paper or a piece of poster board.

When you’re ready to get started, turn the plate upside down and trace it. Once you have your circle form, what you put inside the circle is completely open. You can create abstract forms, designs and patterns. Keep it simple with crayons or markers, or you can get more elaborate and try oil pastels which have glorious, rich color, are very forgiving, and are fun to blend. You can collage with magazine images or diabetes supplies too.

Mandala

If you’re just using basic drawing materials, start creating shapes or lines – straight lines, wavy lines, curly lines, dotted lines, any kind of line – and let the design happen. Once you’re happy with the shapes and lines and the design they create, go back and color in the white space, with solid color or patterns or recognizable imagery if you want to give that a try.

If creating a design like that doesn’t appeal to you, I would suggest you use the circle form for one of the following:
* Create a badge that honors the time and energy you invest in your diabetes management, or one that honors a health goal you’ve accomplished.
* Create a symbol of good health or your personal health goals.
* Create a symbol of any struggle you’ve had with diabetes as a way of acknowledging that diabetes is hard work.
* Use the circle as a place to lay out your fears or frustrations with diabetes, and let the circle hold that for you.

You can have an idea or plan to guide you, or you can just let it emerge. Don’t listen if your self-critic starts telling you this or that isn’t good. The self-critic in any diabetic’s head tends to be too harsh, too loud, and talks way too much, so use this opportunity to practice telling it to be quiet. If you created a mandala, or any kind of art for that matter, from your imagination with the intention of making something meaningful, it’s inherently GOOD!

For more information about Diabetes Art Day, please visit the official Diabetes Art Day website where you can learn how to participate, upload your Diabetes Art Day images to share, and view the beautiful collection of art that the DOC has created.

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