By Mary Fridley
I haven’t felt like writing lately. My best friend is in the final stages of cancer (or cancers to be exact), so it’s been harder to focus on putting words to paper and other life activities. My best friend is Dr. Susan Massad, who I’ve had the great good fortune to work and play with for close to 40 years – most recently as faculty of the East Side Institute, where we co-created and co-lead a workshop/conversation series, “The Joy of Dementia (You Gotta Be Kidding!).”
I’ve mentioned Susan in prior agebuzz posts, but I want to use this one to introduce the agebuzz community to what I believe is one of the most important contributions this innovative and caring physician has given to the many thousands of people who have been lucky to call her their doctor – the Health Team. Never heard of a health team? Don’t worry, very few have – which is too bad because, based on my experience, they can be incredibly helpful in more powerfully navigating a health and mental health care system – and other life situations – that COVID has made more perilous.
Susan is a retired physician who taught and practiced primary care internal medicine at several hospitals in California and New York City for over 50 years. As a child of progressive parents and a long-time community activist, she has never been a traditional physician. Susan has never been comfortable with an approach that separated the individual patient and his/her illness from what was taking place in his/her world/society/community. She was willing to do whatever it takes – including training her residents in improvisation as a way to improve doctor-patient communications – to ensure that the relationality of health (and health care) is always front and center.
She firmly believes that the more we proactively choose how to “perform our illness” (as opposed to the passivity of “being sick”), the more impact we’ll have on the physical and emotional health of individuals and society. The first health team was created over 30 years ago and has continued to develop at a time when “regular people” have almost unlimited access to medical information via the Internet, popular press, patient advocacy groups, and personal narratives – and yet no one is happy with the medical establishment.
After Susan discovered the Institute and social therapeutics – a philosophical, performance-based, approach that helps people to grow and develop by relating them as social performers and creators of their emotional and physical lives – she created the health teams as a new way to work with patients. The health team model can also help positively grow the patient’s sphere of resources as part of the complicated and ongoing process of creating health and wellness in our lives, families, and communities. Additionally, it is an environment in which no separation is made between the physical and emotional health of the patient since the two are inexorably linked.
What differentiates the health teams from support groups and related efforts is the focus it places on living one’s life, as opposed to the needs and demands of the illness. Accommodating to the needs of COVID, cancer, diabetes, chronic pain, etc. is not the goal. The questions that engage most of the health teams we have worked with are how one lives the whole of their life given the demands of the illness, and how one can bring all of the resources of one’s life and community into this process.
So what do the health teams look like “in action”? Let’s hear from Susan, who wrote this in a talk, “Creating An Ensemble for Performing Health,” which she co-presented at a national conference sponsored by the Taos Institute:
“Health Teams are most often organized after consultation with one of us who recommends a health team approach. Participation in the team is voluntary and members are drawn from a network of friends, relatives, and professionals. The dozens of health teams I’ve helped form have met anywhere from one month to three years.
The health team meetings are conversational and address a large range of what are thought to be traditional illness-related concerns, including pain management, sleep difficulties, recommendations of providers, side-effects of medicine, difficulties one is having following a diet, conflicts with reducing workloads, rebellion against certain regimens, and disagreements with health care providers.
The primary work of the team is to continuously engage the question: How are we going to create the most developmental life possible that includes, but is not dominated by, the constraints and needs of a particular illness? We have found that the most positive team experiences have been when the team is invited in to examine every aspect of the illness – including emotional – and participate in all decisions as to how the illness is to be performed in day-to-day life. The evolution of my illness to ours is supported through conversation, journaling and the direct participation of team members in the process of care.”
A heads up: going from my to ours is really hard. I can’t tell you how many fights I had as a therapist with patients who, no matter how miserable they were, were deeply resistant to giving up “MY depression, MY anxiety, MY frustration.” I say this with love – I feel this resistance as much as anyone – but I’ve also learned how holding on so tightly to MY keeps us from doing something new and from being more giving to ourselves (on whom we can be pretty hard) and to others. Does it make pain, sadness (or whatever) “go away”? No. But it does help us be less isolated and more empowered in how we choose to express and to give our emotions.
I’ve learned a lot about this from Susan, who performs what she urges others to practice. At every step of Susan’s cancer journey, her health team, made up friends and family, has been by her side, going with her to doctor’s appointments, not just to take notes but to actively support her in making sure the “treatment” she receives from her many medical teams is consistent with how she wants to live her life. She has also worked hard to make it possible for everyone to share the pain, sadness, grief, love, joy (and so many other emotions) that are as much of the health experience as any of the physical symptoms.
As anyone who has engaged with the healthcare system knows, it can be one of the loneliest, most humiliating, and intimidating experiences we’ll ever have – but it doesn’t have to be. However, as Susan will be the first to tell you, it’s up to us – patients, consumers, people – to transform it. So even if health teams aren’t for you, I invite you to play around with other ways to “perform” your health, your grief, and your life less alone. This seems especially important now because I, like many agebuzz readers, am at an age where I am having to deal with more serious illnesses and where the death of friends is becoming more the rule than the exception. So it just makes sense that strengthening our ability to embrace health, death, grieving, aging, and more, in a way that supports living life as fully as possible, is a smart investment to make.
And it’s also a way I can be loving to Susan, who is not terribly sentimental about death and doesn’t want her friends to stop living our lives because hers is coming to a close. I don’t find this easy, so I want to thank everyone who is reading this for being part of my “grief team,” because sharing Susan and her discoveries with you and with other friends (and strangers) is what makes it possible for me to be less isolated and paralyzed by the roller coaster of feelings I experience on a daily – no, make that hourly – basis.
Mary Fridley is on the faculty at the East Side Institute in NYC, co-creator and leader of The Joy of Dementia (You Gotta Be Kidding!), and coordinator of Reimagining Dementia: A Creative Coalition for Justice. An accomplished teacher and workshop leader, Mary practiced social therapy for 12 years and uses the social therapeutic approach as a teacher and workshop leader. She is the author or co-author of several articles and chapters on the Joy of Dementia, including a chapter that appears in The Applied Improvisation Mindset published in August 2021. Additionally, Mary is a guest blogger for agebuzz and a playwright and theater director. She makes her living as a non-profit fundraising consultant. She can be contacted at [email protected] .