Creativity Group Meeting Aug. 25

The second Creativity, Resolution, Art, Illness & Community (CRAIC) web-based meeting will be held on August 25th at 11 a.m. Eastern. This group is a safe environment for sharing and getting feedback on artistic expression, and for learning to use creativity to develop a healthy response to chronic illness. There is no charge for participating, but you must register in advance at https://www2.gotomeeting.com/register/671968747.

I’m pleased to have Scott Petito and Beth Reineke join me as our featured artists in residence this time.

Scott is a Grammy nominated composer and producer. His NRS Recording Studio in Catskill, NY has been a popular destination for acoustic and jazz artists for many years. Scott is a gifted bassist and multi-instrumentalist who has performed on hundreds of recordings in many musical styles. James Taylor, Rory Block, The Band, Dave Brubeck, Jack DeJohnette, Mercury Rev and Keith Richards are only a few of the many artists with whom Scott has recorded and/or performed with. Scott is also a member of the legendary punk/poet band The Fugs, who have recently released, Be Free! The Fugs Final CD [part 2]. Scott has his own solo bass ambient instrumental CD titled Sbass Music and for over a decade has been performing as a duo with his partner, Leslie Ritter. Together they have released three highly acclaimed vocal recordings, In The Silence, Circles in Sand and This Christmas Morning. For more information, visit scottpetitoproductions.com or leslieandscott.com

Beth has been involved with music in one way or another for most of her life. After moving to Woodstock, N.Y., she began working at Scott’s NRS Recording Studio in 1997. She has worn many hats while there, including recording assistant and session singer. Beth has been Leslie Ritter & Scott Petito’s road manager, as well as providing stirring harmony vocals at their performances over the years. Some of the other artists she has recorded and/or performed with include; Rick Danko, Tom Pacheco, Pete Seeger, Michael Jerling, Scott Ainslie, Michael Franks, Helen Avakian, Aine Minogue and Anne Hills. Beth has also worked as a music publicist and radio promoter for multiple record labels and musicians such as the Hudson Valley Records roster of artists, Artie Traum, Happy Traum and Priscilla Herdman. For more information, visit myspace.com/lehemmusiconmyspace.

I hope you’ll be able to attend the meeting – please make sure to register in advance at https://www2.gotomeeting.com/register/671968747.

Creativity Video Posted

I’ve posted a video of the first Creativity, Resolution, Art, Illness & Community (CRAIC) group meeting (held on June 16) on my website at http://www.albanyhealthmanagement.com/services_craic_pastmeetings.shtml. I hope you’ll take an hour to view the video and let me know what you think.

Some of the things that happened during the webinar include:

• We talked about how innovation and creativity are vital in developing a healthy response to chronic illness and trauma.

• Photographers Bill Glenning and Ann Fantauzzi presented images they have taken and talked about how their art has been influenced by their chronic illnesses. Their photos are also posted below the video on the Past Meetings webpage.

• Participants asked questions and offered insightful thoughts about how to use art and innovation and to stay motivated when you have a chronic illness. (We’ll have more conversation at future CRAIC meetings.)

At the end of the video we announced a date for the next meeting, which unfortunately we’ve had to reschedule. We haven’t set a date yet — it will be August or September — so please join our e-mail list to receive information about the date and registration details. Just contact us with your name and e-mail address and note in the comments box that you would like to be added to the CRAIC e-mail list.

Creativity, Resolution, Art, Illness & Community

Craic is a Gaelic term that, loosely translated, means having a good time and laughter with friends. I was happy to discover that it’s also a perfect acronym for a project I’m launching in June — the Creativity, Resolution, Art, Illness & Community group.

Creativity is vital in developing a healthy response to chronic illness and trauma. By using our powers of innovation, we’re able to devise better ways of overcoming obstacles and dealing with the cards we’ve been dealt. And the arts — writing, music, painting, sculpture, dancing or other creative expression — offer an outlet for expressing our emotional and physical feelings. Art is both informed by and informs our suffering.

One problem we face is that chronic illness is inherently isolating, so we lose the ability to get feedback about our art and our experience. Through CRAIC, we’ll work together to create a community for feedback and sharing that is accessible in spite of limitations. We’ll meet using a Web- and phone-based system to learn about creativity and artistic expression, set individual goals and share our creative work.

It’s not a support group or therapy; rather it’s a safe environment to learn, develop community and get feedback from others on our progress. I’ll use my experience as a group facilitator and educator to ensure that we remain positive and helpful to one another and that individual interests and differences are respected. CRAIC came out of DePaul’s Chronic Illness and the Arts Symposium I spoke at on May 12, but the group is open to anyone. There is no charge for participation.

Whether you are currently working on an artistic project or simply want to learn more about CRAIC, I invite you to join us for the first meeting, on June 16 at 11 a.m. Eastern time. You can get more information and register for the Web-based meeting at https://www2.gotomeeting.com/register/797008011, or e-mail your questions to me at blog.28@albanyhealthmanagement.com.

Creativity & Chronic Illness

I spent a few days this week in Chicago, where I spoke Wednesday at the Sixth Annual Chronic Illness Initiative Symposium at DePaul University. I have been fortunate to have a long and fruitful relationship with DePaul and it’s always good to return and see valued colleagues. It’s also heartening to meet the DePaul students who are going to great lengths to continue their education in the face of complex circumstances.

May 12, the day of the Symposium, was also International CFS/CFIDS/ME Awareness Day, a day to build awareness of chronic fatigue syndrome and work to further research and end the suffering that it causes.

CFS is the first illness in which I and my DePaul colleagues, led by Dr. Leonard Jason, validated the Fennell Four-Phase Model. The papers that we published continue to influence the understanding of how people come to integrate chronic illness into their lives. I remain deeply proud of the work that we have done together and to see the DePaul team continue publishing papers to further this work.

This year’s DePaul Symposium was about Chronic Illness & The Arts. As a lifelong musician, this is a topic that is very important to me. There is tremendous power in the creative process that helps people respond better to changing and uncertain circumstances.

With a chronic illness, you often don’t know what’s going to happen from one day to the next — it’s the roller-coaster that can be the hardest thing for people to cope with and understand. As the old saying goes, the only constant is change, and this is particularly true for people with chronic conditions.

I have defined five capacities that help people establish acceptance and meaning in their changed circumstances. They are:

1. Tolerate ambiguity
2. Become curious
3. Take risks
4. Improvise
5. Innovate

Using your powers of creativity in any medium, from the arts to business to daily living, is a powerful antidote to the feeling of helplessness that so many people feel when they are sick for long, indeterminate periods of time.

If you’d like more information about this topic, check out the slides from my two presentations here.

And please feel free to leave a comment on my blog or send me an e-mail at blog.28@albanyhealthmanagement.com.

Educating Students With Chronic Illness

Statistics show that chronic illness is rising among all age groups, including students. Last month I mentioned in my blog some new research that supports this, and the problem that poor health is associated with students dropping out of school.

My colleagues Ann Fantauzzi and Paula Leitz and I have become increasingly concerned about this situation as we personally see the impact that chronic illness has on the education of young people we know through our professions. Ann is a former teacher and now a teacher mentor, Paula is a professor focusing on teacher training, and I treat a number of youth with chronic conditions, including cancer and fibromyalgia, in my clinical practice.

One of the biggest problems we see is that the school system is well accustomed to accommodating children with acute and/or short-term disabilities, like broken arms or legs, and traditional disabilities, like visual or auditory impairments. But they don’t do as well accommodating students with chronic relapsing-remitting conditions like cancer, multiple sclerosis or chronic fatigue syndrome, for example.

Although federal disability laws require schools to accommodate students with disabilities, we have found that school personnel, including administrators, teachers, principals and others, often need to be educated about the unique nature of chronic relapsing-remitting conditions. It can be confusing to see a student alter between periods of relatively good health and extreme weakness and disability, and the flexibility required to accommodate these students can be difficult to achieve in the stressed American school system.

What seems to work best in these cases is a combination of established pedagogical techniques, notably differentiated instruction, and chronic illness models, such as the Fennell Four-Phase Model.

Chronic illness models, including the Fennell Four-Phase Model (FFPM), address the universe of issues and concerns facing students and families with chronic conditions. FFPM outlines Four Phases that people commonly pass through as they learn to incorporate their altered physical abilities or psychological outlook into their personality and lifestyle.

Differentiated instruction is designed to accommodate the varying learning needs of students, whether they are gifted, learning disabled, chronically ill or typical. Differentiation allows teachers to provide high-quality learning opportunities while engaging each class member at his or her own level. Differentiation is also validating for students. It presents curriculum in a way that is relevant to their lives and helps them make connections between concepts, which in turn helps them to retain new ideas.

Overall, differentiated instruction gives the student more control over their own work because it is set up cooperatively with the teacher, and provides educators a greater sense of management and choice of outcomes for individual assignments.

By blending the FFPM approach with differentiated instruction, educators can develop individualized approaches to teaching students with chronic conditions that meet the students “where they are.” By using FFPM to take into consideration the medical, social, familial and psychological situation the student is facing, educators can use differentiated instruction to develop curriculum and assignments that are relevant to the student’s life, interests and abilities.

We’ve found that combining these approaches offers students a greater opportunity to maintain their education while coping with the relapsing/remitting nature of chronic illness.