Some of the things that happened during the webinar include:

• Musicians Scott Petito and Beth Reineke offered great feedback on how they use innovation and improvisation in their art. You can also listen to their music on the same webpage where we posted the video from the August 25 meeting.
• We had a great talk about the five capacities of improvisation — 1. Tolerate ambiguity, 2. Take risks, 3. Become curious, 4. Improvise, and 5. Innovate. We asked participants what they thought were their strengths and weaknesses among these capacities and got some really interesting responses. None of the participants thought they were very good at tolerating ambiguity, so it was logical that most people thought that’s the area where they needed the most help.
• We also had a lot of questions about the difficulty of judging your own work and about sharing your work with others. Some people felt that the idea of “art for art’s sake” — doing something creative that you like, regardless of what other’s might think — is sufficient.
• Scott and Beth offered a lot of insight on the topics of ambiguity, getting started on a project and the benefit of sharing your work with others.

We intend to hold CRAIC meetings every other month and will soon announce a date for the next event. To receive notification about the next CRAIC meeting, join our e-mail list by contacting us — please note in the comments box that you would like to be added to the CRAIC e-mail list. We’ll also post the next date on the Events page on our website.

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.

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 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.

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.

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.

In February, David and I spoke to the good people at the Mental Health Alternatives to Solitary Confinement Coalition, meeting at the Urban Justice League in New York City. This group is working to gain appropriate psychiatric care for inmates with severe mental illnesses. We talked about how the Fennell Four-Phase Model (FFPM) can describe the universe of trauma that emerges from violence and crime.

When we talk about violence, we naturally think about the victim’s experience of trauma — how is that person coping with what has been done to him or her? However, for the good of our community, we need to recognize that violence and crime can cause trauma in all parties involved in a crime — the victim, of course, but also family and close friends, but also the perpetrator, his family and friends, and even the law enforcement community which is trying to bring justice to the situation. For example, families of perpetrators are frequently traumatized by the impact of what their loved one has done to harm another. In addition, many criminals have been victims of trauma before they turn to violence.

FFPM describes the phases that any of these parties experience due to long-term trauma. It doesn’t pass judgment on any of the parties – it is a values-neutral, systems-based approach that understands that trauma is painful for all parties in different ways. It acknowledges that trauma-related symptoms change over time and in response to different experiences and circumstances.

It recognizes that if trauma isn’t treated, it is likely to be repeated.

People who have long-term trauma go through four predictable phases. In Phase 1, Crisis, the person is trying to contain the urgency and focus on the things that are necessary to cope with day-to-day life. In Phase 2, Stabilization, the person is carving order out of chaos and developing new norms. In Phase 3, Resolution, the person establishes an authentic new self and develops a supportive, meaningful philosophy. And, in Phase 4, Integration, the person appreciates that the experience is part of his or her life, but not something that defines him or her.

Once we have assessed the person’s Phase we can implement targeted psychiatric, physical and behavioral treatments to help them progress to the next level on the pathway toward Integration. And, by continually assessing and taking into consideration the impact of life events on the experience of trauma, we can limit regression into earlier Phases during times of greater stress.

When we view crime in light of the long-term trauma and Phase model, we open the door to resolution and healing, and development of a safer, more just society.

As more students come to school with chronic conditions like diabetes, asthma, autism, and autoimmune diseases, as well as diseases precipitated by the rise in childhood obesity, this issue will grow in importance. A recent study in JAMA reported that chronic illness in young children — ages 2 to 8 — doubled in just 12 years, to 1 in 4 children in 2006, up from 1 in 8 in 1994. Students with chronic conditions are at higher risk for school absenteeism and drop-out. In addition, dropouts are more likely to suffer from illness or disability in adulthood.

Clearly, chronic illness has serious impacts on schools, teachers, families and students, as well as our nation. It’s crucial that we find solutions to the problem of chronic illness and student absenteeism and dropout.

For more information about the rise in childhood chronic illness, see:

New York Times

WebMD

We talked broadly with Alan about long-term trauma, particularly the mental and physical health symptoms often experienced by people involved with a crime. We discussed how crucial it is for those impacted by violence — including victims, offenders, their children, partners and families, as well as law-enforcement and other professionals who work with crime victims and offenders – to heal from the loss and trauma they experienced so that they can go on to live full lives.

We also talked specifically about the experiences of David, brother of Unabomber Ted Kaczynski, and Gary, one of Ted’s surviving victims. In 1996, David and his wife, Linda, made the difficult decision to approach the FBI with their suspicions that David’s brother might be involved in a series of bombings that caused three deaths and numerous injuries over 17 years. David and Gary have forged a close bond through the experience of working to recover from their individual traumas, a friendship that has enriched both of their lives.

The interview has recently been posted on the WAMC/Northeast Public Radio Web site, and I hope you’ll take the opportunity to listen and let me know what you think.

Alan Chartock… In Conversation with David Kaczynski, Gary Wright and Patricia Fennell, 12/11/09

The report of an association between the retrovirus XMRV and chronic fatigue syndrome (CFS) is extremely exciting. As someone who has been treating CFS patients for 20 years, I have been avidly following these reports and I congratulate the Whittemore Peterson Institute, Dr. Judy Mikovitz, and their colleagues on this important finding. I look forward to learning more about this breakthrough as they continue their vital research into XMRV, CFS and treatments for it.

I do think it’s important to acknowledge that science moves slowly and, no matter how long you have been ill with CFS, it will never seem like science is moving quickly enough. This illness robs patients of so much – not only their health, but also their livelihood, predictability, social connections, security, self esteem and other fundamentals.

The scientists are working diligently, as they have for more than two decades, to unravel the mysteries of CFS and develop effective medical treatments for it. As they persevere with this new avenue to explore, we must continue taking care of those who suffer the effects of CFS – not just the patients, but also their families and loved ones who have also seen their lives change in so many significant ways.

As I have listened to my patients talk about XMRV in recent weeks, I have heard them express many emotions – first hope and excitement that scientists are closer to finding the answers that will return them to health, but also anger that so much of their lives has already been stolen by CFS, and concern over the potential implications of having a virus-associated illness. Change, even positive change, often produces new questions and stresses that we may not have considered before. We at Albany Health Management Associates are glad to be helping our patients and their families navigate more smoothly the road that lies ahead, wherever that road takes us.

For more information about XMRV and CFS, here are some links to articles and opinions from some of my colleagues in the battle against CFS and national journalists who have been investigating CFS for decades.

Dr. David Bell

Dr. Nancy Klimas

Dr. Charles Lapp

New York Times

Dr. Suzanne Vernon (CFIDS Association)

Whittemore-Peterson Institute