Crawling out from under my rock: thinking of the 9 joys of survivors

What do you do when you have a chronic illness and just had a bad day? There’s always a temptation to crawl under a rock, and honestly those who do make that choice because they have to at the time. No one suffering under limitations of pain, illness, and trauma should just be expected to do much more than what they can.

exhausted dog

Yesterday was a particularly bad day for me. The heat, damaged heart, excitement, and probably a long list of contributing factors added up to exhaustion, pain, and a general depression brought on by being afraid that there will never be something better than this. Each setback for those with conditions is not so much a setback as a reminder of mortality and the transient nature of our being in general.

I remember a particularly instructive moment for me years ago when my dog, a Carron Terrier, had hot mashed potatoes dropped on her back. She ran around barking and basically dog screaming because, I think, she thought the burning and discomfort were never going to end. Besides, there are usually two things that can happen when we have such an experience: it gets worse or it gets better. Under the weight of hot potatoes the notion that things will get better is often crowded out by the dramatic nature and suffering of the moment.

People expect us to be normal and if they see we are busy and engaged in life expect that all is good with us. We know that isn’t the case. But, we begin to believe that ourselves to whatever degree is necessary to get

out of bed and do something to have some fun, make a little money, and do some good in the world. When we have a really bad day, the whole illusion of normal and energy collapses. We have to start again and see where this turn toward worse is going to go: it gets better or it gets worse.

This year at Survive and Thrive we are focusing on reconciliation with others and with ourselves. It is not an easy thing to do. But the people who want to do it, who want to thrive in the world and who want to come out from under the rock – remember they can and are owed crawling under a rock if they must – need community and things to do to help them join the world with their suffering, limitations, and fears. . . even to the point of finding joy.

9 Joys of Survivors

We have identified 9 joys for survivors and will be focusing on them during the conference. Those of you coming and those thinking about coming will find them useful, I think, in potato cooling and coming out from under the rock.

To do this work, restore the miracle of life.

S and T 2013

The design for the conference in October includes working together to a shared goal.  We are asking two general questions that allow facilitators of the workshops and studios to develop their own themes or topics.  The two questions are: (1) What do survivors need to know about ___________________? and (2) What does this work mean to you and others?  Both questions eventually are linked because the will to meaning is a central issue for survivors and their care givers. If they can find a meaning for life that sustains them, they all will sustain their desire for life. A poem in the current Survive and Thrive anthology, “If You Do This Work,” engages both questions and the issue of what happens when we do work that is exploratory, marginal, and necessary — work that is always a part of our will to meaning. As such, it is a point of shared interest, I think, in our search for meaning and our work of preserving and restoring the miracle of life.

Liana Livingstone recently took the poem  and interpreted it through pictures and a certain delight in font selection. Her performance of the poem reminds me of our peak experiences at the Conference and Festival. I think of how we layer healing, technology, and art so that we join in a chorus of thinking, acting, and performing the restorative arts. Liana’s interpretation is an example of that, especially when we layer it with the music on the CD (“If You Do This Work”) and add personal interpretations and readings. The visual experience, which I am going to include below, is a part of a cluster of ideas and experiences and acts that help define our work together.

Click here to Begin the Presentation
Move through the presentation by clicking forward (right) or back (left)
Download the Accompanying Audio File (m4a)

For example, in his talk and his essay for the Survive and Thrive anthology, ”Of Sparks and Scourges And Second Chances,” Dr. Keith Lurie helps us understand what it means to “do this work” for him and for the rest of us:
What we have learned is that the discovery process is only the beginning of a very long journey. Restoring the miracle of life after cardiac arrest requires collaboration, buy-in, willingness to change, victims who die but might then help to motivate change, champions, resources, alignment of shared motives and goals, collaboration of health care providers across the broad spectrum from emergency medical technician to the CEO of the hospital, and a shared vision of educators from the CPR instructor to the president or Chancellor of the University. (8)

Dr. Lurie writes about the lives saved with the total system for survival and what those lives mean to him. He traces the growth of the idea (a person who had used a toilet plunger to save a life) to the robust and holistic vision of Take Heart and the technolgy that supports its mission. He also helps us understand the perplexing fact that even when people know how to save lives they often do not practice the knowledge, comparing in his talk to us (another layer of his performance and another layer for the poem) the knowledge that limes did protect against scurvy and the long years it took to apply that knowledge to the current state of practice in CPR, where we know how to save lives but do not practice the holistic approach or ignore what works. It is an artful and appropriate comparison – we get it because we see it historically and personally.

Perhaps it takes so long to actually implement life saving technology (be it limes or an EMS pod) because people have knowledge but do not know it.  What this means is that medical humanities and narrative medicine must offer illiustrations, arguments, testimony, and a prisim of experiences about survival so that when someone has the knowledge they know why they have it.  I realize this is a difficult and seemingly complicated idea, but it is actually not complicated at all when we consider how we KNOW something.  Our goal of restoring the miracle of life requires us to layer information, experience, and aesthetic engagement so that people who are offered life saving and life giving knowledge may know it deeply enough to act on it.

One of the main reasons for the Conference and Festival is to encourage such layering and blending of stories from science and art, from medicine and humanities so that we get a better SENSE and a better REALIZATION of the whole experience of surviving and thriving. In this view of the conference and festival, we interpret “If You Do This Work” in regard to our own passions, persistence, practice, and preparation for it. The poem, for some therefore, becomes a touchstone for the power and, yes, the cost of the work in order to save lives and to make lives better.

As we are designing the conference and festival for this coming October, this is still a guiding principle – to allow us to celebrate the work we do together and the joy and sorrow of it in order to fulfill Dr. Lurie’s goal of “restoring the miracle of life.”

 

 

 

Welcome to the corpus callosum club: What does thinking have to do with healing?

Graycorpus
An old friend of mine, Ann Berthoff, is greatly loved and respected by many as well as myself. She is a teacher in the full sense of the word and a scholar who has dedicated her life to composition and reading. In short her life long work has been literacy. Ann recently critiqued narrative medicine for me, suggesting that expression was not the whole of it and recommended, as strongly as only someone like her can, that thinking has much to do with recovery and healing – with surviving and thriving.

I believe her and would like to explain why and under what contexts. It is true that expression through art and language is not only a starting point but also a focus point for those who suffer, both from illness and from injury. Again, I see suffering and joy as the two most communicable and recognizable of human experiences – the focus points of how we understand what it is to be human and the bridges that allow us to cross one to the other.

Language, art, and music are vehicles for the work of surviving and thriving – the means for crossing the bridges among humans and also the vehicles for crossing the bridge between the two hemispheres of the brain.
hemispheres
Ann Berthoff recently told me a story of a group of teachers who formed the Corpus Callosum Club. The Corpus Collosum is the pathway between the two hemispheres of the brain.
The corpus callosum (Latin: tough body), also known as the colossal commissure, is a wide, flat bundle of neural fibers beneath the cortex in theeutherian brain at the longitudinal fissure. It connects the left and right cerebral hemispheres and facilitates interhemispheric communication. It is the largest white matter structure in the brain, consisting of 200–250 million contralateral axonal projections. http://en.wikipedia.org/wiki/Corpus_callosum

And, a definition from the Psychology Glossary:
Corpus Callosum: This area contains the largest bundle of nerve fibers in the brain and connects the two sides (hemispheres) of the brain. The corpus callosum doesn’t just sit there, it is responsible for allowing the two hemispheres to communicate with each other and share information. Thus, the corpus callosum carries massages between the left and right hemispheres of the brain. Psychology Glossary

http://www.alleydog.com/glossary/definition.php?term=Corpus%20Callosum

This information is, I am sure, basic to any MD or nurse with any familiarity at all of the functions of the brain, but it is worth noting for the rest of us that this pathway is central to becoming a whole person and to surviving and thriving. It is also clear to me that the practice of the arts stimulates the exchange between hemispheres. I would also like to make a case for the language arts being particularly important in facilitating exchanges between hemisphere’s and creating new synapses that make healing and revival from brain injury possible.

My argument about language and healing, and ultimately thinking and healing, has to do with the designated roles (functions) of the hemispheres. Holistic thought, for example is situated in the right side, along with art, music, and intuition. The inclusion of creativity in this function mix may be a bit problematic – not in regard to function but in regard to our understanding of creativity. Creativity I argue is the interchange between the functions in the two sides of the brain. There are many studies about what happens when the cc is severed, split, or underdeveloped, most famous the work of Roger Sperry in the 1960s. For example:
The studies demonstrated that the left and right hemispheres are specialized in different tasks. The left side of the brain is normally specialized in taking care of the analytical and verbal tasks. The left side speaks much better than the right side, while the right half takes care of the space perception tasks and music, for example. The right hemisphere is involved when you are making a map or giving directions on how to get to your home from the bus station. The right hemisphere can only produce rudimentary words and phrases, but contributes emotional context to language. Without the help from the right hemisphere, you would be able to read the word “pig” for instance, but you wouldn’t be able to imagine what it is. http://www.nobelprize.org/educational/medicine/split-brain/background.html
Not knowing what a pig is and being able to read “pig” is a demonstration of the problem with the split. What is it to be human without the ability to imagine a thing once named? How is it to be a human without the most basic function of language, to be able to know something without holding it in your hand? So, the connection between language and the right side of the brain becomes central to being whole in mind. It happens because of the corpus callosum.

As Emily Dickenson has it:
I never saw a Moor –
I never saw the Sea –
Yet I know how the Heather looks
And what a Billow be.

This brings me back to Ann Berthoff and her insistence that thinking is necessary for healing. Ann’s work has been literacy but also developing the speculative instruments of the mind in order to think creatively – to engender as it were “felt thoughts.” When she uses words such as thinking or reason we are not necessarily wrapped in the traditional cluster of acts most associated with thinking. Mainly, I believe Ann would contend, and I am going to ask her about this, that the species of thinking she wants us to do to heal and to thrive is a species that creates an awareness of the mind’s function and interplay between the hemispheres – a thinking that focuses on the CC. That thinking is characterized by a willingness to audit our thinking – and our meanings – something that Ann Berthoff teaches us to do in her books. We are best served in this by metacognition – the awareness of how we think, why we thought, what is happening when we think, and how that thinking transforms our feelings into thoughts and in doing so blends them in such a way as to allow us to feelthink. The artistic side and the scientific side of our brains are thus joined. Wholeness.

As any therapy can be a good or bad thing depending upon the reductionist approach to therapy. Narrative Medicine must be for those who study and practice it a non-reductive activity that finds theories and scientific data the stuff of interpretation. We may want to find a theory of therapy that suits us well. In this case, what therapies are most suitable to building the bridge between the right and left side of the brain. It seems to me that we can begin as scientists or as artists as long as we meet on the bridge, this is a good metaphor and a good description of acts that engage us in the celebrations and work of the corpus callosum club.

Here, I want to suggest Viktor E. Frankl’s “will to meaning.” Frankl, a concentration camp survivor, maintains that the primary need in humans is not the will to pleasure or power but the will to meaning. We suffer most, he says, from a lack of seeing what we are and do as meaningful. For the survivor, and Frankl is one, the deliberate search for meaning is essential for health and for well being. Otherwise, we live a “provisional life,” one that leads to apathy. He says,
Psychological observations of the prisoners have shown that only the men who allowed their inner hold on their moral and spiritual selves to subside eventually fell victim to the camp’s degenerating influences. The question now arises, what could, or should, have constituted this “inner hold”? (69)

In his descriptions of what constituted the tools or instruments, Frankl tells stories that reveal art, humor, observation, story telling, and reasoning as elements for survival. He further says, “Sensitive people who were used to a rich intellectual life may have suffered much pain . . .but the damage to their inner selves was less. They were able to retreat from their terrible surroundings to a life of inner riches and spiritual freedom” (35).
The lives of those who are injured or ill or prisoners are alike in this sense, that an engagement with the artistic and with careful observation (science perhaps) will be something that is a therapy in the sense that it is something for them to do in finding and creating meaning in their lives.

Getting the most from going to the conference and festival

Image

Being a Participant at the Survive and Thrive Conference and Festival

logo and attitude

Conference organizers tend to make certain assumptions about conference goers and their reason for being at a conference. For those who have been to a conference before, usually for professional reasons, the fast pace and information overload can make it a stressful time. For those who have never been to a conference, the experience has been compared to “drinking from a fire hose.” The Survive and Thrive Conference and Festival does have a view of what someone going to the conference is like, but it is also true that those coming will be from different cultures and academic disciplines as well coming with a variety of purposes. A general description of conferences and what happens there would be useful so anyone attending and/or presenting can get the most out of the experience.

 

First, a conference is dedicated to a profession and often a theme. Our theme is pretty much built into our title and related to the professions dealing first with Sudden Cardiac Arrest, its occurrence, survival, and recovery but, second, the experiences of trauma, injury and illness, that share the nature and qualities of SCA. The conference starts with the heart and from there relates issues of body, mind, spirit, and society to it.

The three threads of the conference presentations are (1) Emergency Medical Services, (2) Medical Technology, and (3) Narrative Medicine and Medical Humanities. I suggest you review some of the other blogs on the site to catch up on those areas of the conference, but in terms of what is happening the first is about getting the heart beating, the second about keeping it beating, and the third giving it a reason for beating. The festival part of the conference is something that is often a part of conferences but offered as entertainment. In this case, because of our connection with the medical humanities, the festival is designed from the start to be a part of the experience for the participants. We are, in short, demonstrating what narrative medicine and the medical humanities does. This is why there is an anthology created for the conference and a music CD. The book and CD, as well as the Artistic events, are just as important as a paper or talk to what happens during the conference.

Second, if you are not a part of one of the disciplines or fields of study in the conference you will be going to find out about them or to get to know the range of work, career opportunities, information, and experiences offered by them. No matter what your experiences with medicine, the arts, or science, you will have a pathway into the conversations and discussions at the conference because the conference is designed to offer both experts and non-experts access to information and experiences. In fact, given the nature of the conference it is expected that people at the conference will not be experts in all the sessions.

The best thing to do is to look at the schedule ahead of time and select a series of sessions and events to attend. I believe the conference organizers all hope those attending will select sections outside of their usual choices because it is the varied nature of the conference that allows conference goers to understand surviving and thriving better.
What are some of the kinds of experiences offered?

Talks: Talks are usually given by one or two people about their subject area and involve the audience in a question and answer session following the presentation.
Panels: Panels are often a round table experience or a session where three or four speakers give a short introduction and then discuss the issues raised by a particular topic. A panel on bioethics and The Secret Life of Henrietta Lacks would be an example. Again, the audience is encouraged to participate in a question an answer period.
Workshops: Workshops are designed to be hands-on experiences. They are intended to offer the audience an experience in doing something along with a facilitator – someone who is expert in the field. An example would be a journaling workshop where the participant learns how to work with a journal by working with a writer of journals. At this conference, there is a whole day on the 25th dedicated to workshops and there will be an art workshop during the conference as well.

Hands on acts: Besides the workshops there are activities planned at the conference to allow someone to do something as a way of contributing to the conference and to learn. (1) CPR training – there will be two days of CPR training that takes a little less than an hour to complete. The training is not for certification but to provide the knowledge necessary to save a life. (2) Four Minutes For the Heart – throughout the conference there will be a story telling and witness station where survivors, care givers, and family tell their stories together and have them recorded. (3) Tweet and Facebook – the conference will be a part of an ongoing social media conversation. You can join in with questions, comments, answers, and observations.

Coordinated academic events: The conference is coordinated and in collaboration with the Common Reading Program at SCSU. This means that there are panels and speakers dedicated to the book The Secret Life of Henrietta Lacks. If you are a part of that program or in any class studying the book, the conference offers you a way to respond to the book and the issues raised about bioethics, medical technology, and narrative medicine.

Music and other Artistic events: The conference has integrated poetry, art, music, and fiction. It is one thing to talk about narrative medicine and medial humanities and another to practice and see the practice of them. Coming to at least one of the music or artistic events is an important part of the conference experience. An example would be the concert, reading, and talk presented by Jimmy Santiago Baca at 7pm the evening of the 24th at Ritsche Auditorium on campus. Jimmy is starting the conference off with his story of survival and thriving and the importance of being engaged in writing as an act of healing.

Informal meetings and discussions: One delight of a conference is getting to know the people engaged in working in the field and spending a little time talking with them. Lunches and other food gatherings are of course an easy way to meet people who are either old hands at conferences or just going to their first. The networking and talks that go on in and around a conference and its sessions are often one of the most rewarding parts of a conference. Those who step out or up to meet people get more from the experience.

Given the list above there can be a checklist of sorts for getting the most from the conference. It might be a sort of scavenger hunt or an on-line game. What follows is the checklist; see how many you get checked off. Who knows, there may be more than the satisfaction of doing these things that await someone who does them.
 Register for the conference
 Select a series of sessions/events to attend
 Study up on the sessions and what you can find out about the facilitator(s)
 Read something about the general field of interest you are attending: EMS, Medical Technology, Narrative Medicine
 Check out the career possibilities for the fields of study you are interested in
 Listen to a survivor talk or witnessing
 Attend an event for music, theatre, poetry, or art
 Purchase a book or album and get to know more about the conference that way (There will be a booth selling books, albums, and other items at the conference.)
 Get your book or album signed
 Make a journal at the book making workshop
 Attend a workshop and decide what to do with the practical and inspirational information and activities in it
 Meet someone who is a “dignitary” in the field and get their autograph
 Bring a friend to the conference – it’s always a good idea to travel in twos at least
 Make a new friend at the conference
 Network at the conference – keep a list of names and contact information of people you want to continue to know
 Tweet and/or Facebook about the experience
 Report on the conference to someone (If you are a student this is easy.)
 Write a poem or do some art work or carefully study some aspect of the conference materials
 Follow up on a question or questions raised in the conference by contacting the facilitator(s)/or speaker(s) with you question
 Sign up with Jeff Carmack to work at the conference
 Keep a journal or diary of what you learn and your experiences during the conference (You can use this later for notes and follow up.)
Of course, this is a basic list but suggests the kinds of activities that are rewarding. The conference experience is an active one. The more someone does before, during, and after the conference, the more she or he gets out of it.

The Ethics of Research and Human Subjects: Patients’ Perspective

 

A scientifically competent medicine alone cannot help a patient grapple with the loss of health or find meaning in suffering. Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings, and be moved to act on the patient’s behalf. This is narrative competence, that is, the competence that human beings use to absorb, interpret, and respond to stories. – Rita Charon, MD, PhD

Tell the storiesI have the pleasure of joining a panel to discuss The Immortal Life of Henrietta Lacks this week. The panel is a part of the Common Reading program at St. Cloud State University. The panelists are:

Carla Johnson (Philosophy): discussing the ethical underpinnings of the Nuremberg Code. Outlining the ethical problems of human subjects in research.
Jodi Kuznia (Sponsored Programs): IRB
Kristin Gulrud (Biology): research perspectives
Rex Veeder (English): patient perspectives

The panel follows a presentation by the Center for Holocaust and Genocide Study by
Eva Kor who “has touched the hearts and changed the lives of thousands with her remarkable personal story of triumph. An inspirational force, Eva Kor tells her unforgettable story of survival at Auschwitz as a subject in Mengele’s medical experiments and shares the lessons she has learned during her most extraordinary life. An international author and speaker, Ms. Kor has dedicated her life as a tireless advocate of forgiveness and human rights.” (http://www.stcloudstate.edu/cose/story.asp?pubID=66&issueID=33596&storyID=38944)

The confluence of Survive and Thrive, Henrietta Lacks, and Eva Kor is a rich and challenging one. My piece of the conversation is about patient perspective (certainly more approachable that “patient rights” given the nature of Eva Kor’s forced participation in Mengele’s experiments and Henrietta Lacks uninformed participation in medical research. What I want to do at the panel discussion, and here, is lay out a perspective of the degrees of patient perspective and their place in the medical system.

First, Skloot’s book is a fine example of Medical Humanities. I consider Narrative Medicine to include specifically the voices of patients. In Skloot’s case, we can’t actually have that and depend on the testimony and witness of those who knew her. Eva Kor, on the other hand, practices Narrative Medicine, going about her business as a personal witness. Both witnesses are about the business of public education, the purpose of which is to prepare us through providing stories that give us a context for bioethics. There must be enough public awareness to keep illness, injury or injustice publically recognized. It is also clear that in each case of public exploration we have a revision of history, where someone denied a voice speaks to us about their particular circumstances. In such cases, we can experience a vertigo brought on by a wrenching in perspective. It’s at these moments that we can publically learn the most.

Second, another element from the patient perspective and having their story told is that the patient and their families are no longer isolated and alone. All aspects of medical treatment and recovery are subject to denial and often are ignored by those close to the sufferer and the caregivers. Thus, a witnessing to the circumstances and their meaning to the patient is a coming out of the medical closet. It’s an affirmation that what the patient experiences is not an aberration but part of the human experience. The Nazi’s were deliberate in making patients (subjects) feel less than human. The systems of medicine can be just as convincing to patients like Henrietta Lacks.

Third, in the cases of Lacks and Kor, the dehumanizing had to do with their culture or race. The idea that we can honestly hear the stories of patients without including their culture and or race contributes to the dehumanizing of the patient.

Fouth, another aspect of patient perspective is that patients, now more than ever, have had to become experts of sorts regarding their condition. Part of patient advocacy must be providing resources for information. We must also realize that information about a patient’s condition is specific to them and their family. Dr. David Beard has found that comics intended to help patients understand their situation are most often rejected by cancer patients, who want to create their own images of cancer and their relationship to it. It seems that caregivers are more likely to find the information created by others to inform them useful.

Finally, a patient’s recovery (or the family’s recovery after the illness and inability to survive) is a holistic process involving more than information and reasoning. Mark Williams, et al. in The Mindful Way through Depression, point out that someone who is depressed can’t think their way out of the depression. No matter how smart someone might be, engaging in reasoning about the situation more often than not takes the sufferer deeper into the depression. A patient’s perspective is often a need to control the situation through will and mind power – a perspective that very often leads to failure. Thus, physical, emotional, and artistic therapies are what are needed.

Of Sparks and Scourges and Second Chances

Something for the Medical Technology Thread — The following essay will appear in Survive and Thrive: Start With The Heart — an anthology

Cover for Survive and Thrive: It Starts With The Heart

Of Sparks and Scourges and Second Chances
Keith Lurie MD

“Ya know doc, you should have a toilet plunger at the end of every CCU bed. It saved my father three times in the last couple of months each time his heart stopped” the 22 year old son of a sudden cardiac arrest survivor told to me with a smile and twinkle in his eye more than 25 years ago. But he meant it and he was right.

How is it that a concept that is so simple is so hard to understand? Sure, nobody wants to perform mouth-to-mouth when doing CPR so it is only natural to plunge the chest and then pull up the chest to suck more air in. What is even harder for this doc to understand is why we are such slow creatures to change. Being ‘creatures of habit’ implies we don’t like change at all, especially in medicine. In 1601 a British sea captain, James Lancaster, performed and described what might have been the first randomized clinical trial. Scurvy was known to kill over half of the sailors who set out each year for long voyages. He thought that lemon juice might prevent this deadly disease so on one of four ships he sent to India, all sailors were given a tablespoon of lemon juice each day. Nearly half the sailors died from scurvy on the 3 control ships where no lemon juice was used whereas very few died of scurvy on the lemon juice ship. Have you ever heard of James Lancaster? How about Captain Cook? Captain Cook espoused the use of daily malt, in the form of a beer, to treat scurvy. He was wrong: it does nothing to prevent scurvy but we all remember his name and nearly nobody has ever heard of Lancaster. Some 265 years after Lancaster’s life-saving discovery citric juices (we know now the active ingredient is vitamin C) became part of the standard diet for all British sailors. Millions perished because nobody wanted to make a small and simple change in the sailors’ diet.

So we are in the middle of an enormous cardiac arrest epidemic with the equivalent to 3 fully loaded 747 jetliners crashing and burning every day. That is how many people die unexpectedly (and unnecessarily) from cardiac arrest every day outside the hospital. A similar number die inside the hospital daily. Despite having the technology, inspired in part by the physiology of the toilet plunger patient and the know-how to markedly increase survival rates, we hide behind all too many excuses and are generally unwilling to change.
Jump forward to 2005. Thanks to the unrelenting efforts of many focused primarily in Minnesota, a program first called “Tenting the Town” and later ‘Take Heart America: A Sudden Cardiac Arrest Survivor Initiative’, was born. This program provided a new way to improve outcomes after cardiac arrest based upon best scientific principles and research. Rather than try to find a single silver bullet (e.g. drug or device), multiple interventions known to help specifics aspects of the overall condition are combined to improve circulation during CPR to increase the likelihood of restoring a stable heart beat and blood pressure in patients in cardiac arrest. This treatment is followed by expert post-resuscitation care in specialized hospitals includes cooling the body of persistently comatose patients and treating heart rhythm and heart artery blockages as soon as possible. Shortly after the birth of this program the ‘miracles’ started to happen. Of note, cooling after cardiac arrest was first described in the medical literature in 1959 but first adopted as a standard of care in the US nearly 50 years later. “Miracle in the ICU”, was the subject title of an email describing a man who seemed for all intents and purposes dead who then woke up completely after being treated with ‘cooling’ or therapeutic hypothermia in the intensive care unit. This person, Bob Kempenich, has gone on with his wife Mary to teach thousands in central Minnesota on the importance or and how to perform CPR. Next was the 21 year old Ben Jabs who had just finished watching the Stanley Cup playoffs. After he went to bed and starting making terrible groaning sounds his mother, a nurse, realized his heart had stopped and she started CPR right away. It was 2 AM. The local EMS providers arrived quickly and shocked his heart but he remained in refractory cardiac arrest. When Allina Ambulance medics arrived they implemented the whole Take Heart America bundle of care, that included a new device called the impedance threshold device (ITD) or ResQPODTM, discovered at the University of Minnesota in 1995. When used with high quality CPR this device doubles the blood flow to the heart muscle and helps pump more blood to the brain during CPR. With the Take Heart America approach Ben was then rapidly resuscitated , cooled and he too woke up several days later. Ben went on to graduate from college and now works for Medtronic helping to save the lives of others. Then there was the pregnant 18 year old who was also treated high quality CPR, an ITD, and an automated defibrillator by St. Cloud police officers. She too was cooled. Mom and her baby born 4 months later are both intact and thriving. This was another first, mom and fetus both successfully resuscitated with Take Heart bundle. We celebrate our success stories, including that of Dr. Rex Veeder, who is the editor of this book. He too benefited from the Take Heart therapy that was delivered by St. Cloud Minnesota EMS and St. Cloud Hospital health care providers. The number of survivors with good neurological function actually doubled when the Take Heart America plan was implemented in parts of Minnesota.

So why is the cardiac arrest survival rate still so low in most places around the US and around the world when programs like Take Heart America exist? Why do our star athletes, our moms and dads, and our neighbors still die so often and so suddenly? What we have learned is that the discovery process is only the beginning of a very long journey. Restoring the miracle of life after cardiac arrest requires collaboration, buy-in, willingness to change, victims who die but might then help to motivate change, champions, resources, alignment of shared motives and goals, collaboration of health care providers across the broad spectrum from the emergency medical technician to the CEO of the hospital, and a shared vision of educators from the CPR instructor to the president or Chancellor of the University. Throw into the mix a lot of luck, a lot of love, and a lot of optimism, and then the spark of life will ignite. Only then will we begin to realize that change is possible and we don’t have to wait 265 years or 50 years to move the field forward, that premature death from the scourge of cardiac arrest can be forestalled, and that tens of thousands of parents and children, friends and colleagues can be given another chance to wake up, smile, laugh, sing, dance, contribute to the wellbeing of humanity and once again watch the sun rise.

Be An Artist or Die

Be an artist or die
Art, in all its forms, is a human equivalent to animal instincts in response to suffering. When an animal is suffering or its life threatened the pack or herd is often gripped with terror or what we recognize as a dedicated attention to the suffering pack or herd member. When Lions attack a Zebra, the herd when not in full flight, may stand by and watch with a mixture of wide-eyed terror and we might even say fascination. At some point, these spectators have a switch clicked in their brains, and they go about the business of surviving, seemingly without memory of the death struggle.
I realize this isn’t the only response observed, and the responses vary with species. It’s clear that elephants, for example, will attend to a dying elephant and mates of most species often linger in confusion or perhaps even grief, even when it means death. In fact, the more human the response seems, say in apes, the more we identify with the animal. But, the characteristic animal response to suffering is instinctual, and we can say this whether we believe animals think or not.
Humans have a different relationship with suffering. We do not, in most cases, have an instinct that switches empathy off in order to allow us to move on. Suffering is not something animals contemplate as far as we know, but humans do contemplate, meditate, worry, and think about suffering. Suffering is what we hope our children could avoid, what we wish our elders were spared, and what we sense waiting for us. There is no escape from suffering, and our bodies, spirit, and mind carry suffering along with us as much as they carry joy.
Responses to suffering are often highly personal but recognizable in the makings of human thought and communication. Artists have suffering as their business, along with joy, and sometimes those who interpret art recognize as vital art statements and artifacts that somehow transform suffering into joy, or some feeling or sensation that lightens those suffering so we can accept, manage, organize, understand, be released, or so immerse ourselves in suffering that it becomes a part of bone and soul. This is the equivalent to the animal instinct that releases them from the bondage of suffering so that they can live. For humans that release can lead to not only living but actually thriving as they metabolize their engagement with suffering with their whole being.
For those involved in the practice and science of healing, involvement in art should be something repeated daily at least. Suffering and its consequences are institutionalized for them. The habits of suffering part of protocol.
A primary human trait is to bear witness to suffering. We survive because we become involved in the artful act, the metabolizing and therefor harmonizing of discordant emotions, sensations, relationships, and bodily pain. Through the artful experience we are no longer frozen and staring at suffering and attending grief. Such a release is life giving. It saves our lives if we consider the stresses of suffering and the attending effects on all of us. Be an artist or die, even if it is a matter of many tiny deaths.

Art by Heidi Steadman and selected for the Survive and Thrive Anthology

Soldiers, Jimmy Baca, and It Starts With the Heart

reflection and repose are necessary after trauma

Repose

One of the most asked questions regarding the Survive and Thrive Conference and Festival is “Does the conference only have to do with heart issues?” A more useful question might be: “In what way do my interests resonate with heart issues?”

I would like to offer two examples of explorations at the conference that start with the heart and relate to EMS, Medical Technology, and Medical Humanities/Narrative Medicine. The first is a comparison suggested by the work of two conference presenters: Dr. Audrey Shafer and Mr. Stephen Tuytschaevers. Dr. Shafer is a Director of a Bioethics and Medical Humanities Program at Stanford and works in the V. A. Hospital. Mr. Tuytschaevers has an MA in English and is working on a Social Work Masters while conducting Narrative Medicine workshops at the V. A. Hospital in St. Cloud, Minnesota. The connections between Sudden Cardiac Survivors and their families and returning veterans are physical, emotional, social, and spiritual. Mainly, the survivors of brain trauma and emotional trauma share many of the consequences, including the effects of brain trauma and Post Traumatic Stress Disorder. Thus, veteran’s issues and SCA survivor issues are in some ways similar. This is not to minimize the differences but to recognize some topics are naturally linked and in this case linked by brain trauma and PTSD.

The second comparison concerns Jimmy Santiago’s program that opens the conference on October 24th. Jimmy Baca’s book, A Place To Stand, is being made into a film and there’s a fundraiser for it. http://kck.st/NsBX8g.

The connection between A Place to Stand and Survive and Thrive may not be as obvious as Veteran’s issues, but the spirit of Jimmy’s struggle to move from prisoner to award winning author is an example of what it is to survive and thrive. If you read his poems and his books, one striking feature is the way poetry changed his life from prisoner to award winning author. The lessons for survivors and their families are many I think, but one lesson among them is that finding some passion, something that you wouldn’t expect to be passionate about perhaps, is a key to thriving.

And, comparisons continue when we consider veterans and Jimmy Baca together. He is an Apache and Chicano. Tribal cultures understand the consequence and implications of a retuning warrior. Elders will tell you, if you ask in a good way, that the warrior needs to be isolated from the community and given time to restore harmony spiritually, physically, mentally, and socially before returning to the community. Also, society needs to prepare for the warriors coming among them again. They need to understand what the warrior has experienced.

There’s a distinction to be made between a parade and a healing ceremony. Our society is bigger on parades than on healing. Consider the common perception of the return of the warrior: parades, flags, children surprised by a parent at school while we all look on through the media lens. I appreciate the acclaim and interest in returning warriors but recognize a disservice to them and our society in creating an environment where someone is out country one day and the next surprising their son or daughter in a grade school prank.

It’s good that we pay attention to soldiers and their sacrifices. We throw parades, not only in the streets of New York but also on small town main streets. Images of soldiers in camo-form atop the back seat of a red convertible, with a wife tearfully waving beside him are typical. Kids go to school as if it were a normal day, Dad or Mom jumps out of a car, a back room, (anywhere hidden), or pull off a mask. It’s a formula by now: No parent to surprise parent + astonishment and parade = a domestic demonstration of shock and awe in a flash mob sort of way.

Those of us old enough to have had parent warriors in World War II, or grandparents from World War I, recognize the problems in the rearview mirror. PTSD, addition, and self-destructive behavior were ignored. Some, I believe, were wounded to the point that they never again saw themselves as part of society. The part of them that could nurture and bond with family and friends was dead on arrival at home. Of course in the late 1940s and the 1950s the John Wayne society believed that if someone were troubled by his or her experiences he or she should get a spine and act like George Patton. The real cost of this “attitude” may never be tallied.

But, what are the alternatives? As a society at large do we have the skills to practice a ritual of reintegration and healing? Mall culture is not tribal culture, although I am sure someone will draw comparisons somehow. Yet, my association with researchers and soldiers convince me that there are similarities between returning warriors, who are survivors, and survivors’ injuries and illness, and they include the trauma of returning home – from war or the hospital.

reflection leads to transformation

What this suggests to me is that soldiers and survivors need alternative methods of reintegrating in regards to the personal, familial, and social areas of life. And, their caregivers and families need this as well. This is I believe a central service that the Medical Humanities and Narrative Medicine provide. Whether formal or informal, writing can integrate and restore the balance so important to the Elders. There is much work to do to integrate the individual warrior with society, to rehabilitate the brain and mind, to heal emotional trauma as well as physical trauma, and to find ways to give warriors and survivors a way to metabolize the treatments and tests of medicine – to get the heart started, keep the heart beating, and give it a reason for beating.

Start With The Heart

It Starts With The Heart

What follows is a statement about the conference and festival and its purpose:

Survive and Thrive: Heart Health and Medical Technology is a conference and festival deliberately created to include the Medical Humanities and Narrative Medicine in a dialogue with Medical Technology and Emergency Medical Services. It is a different kind of conference because it blends the threads of Humanities, Technology, and Medicine together, offering aesthetic experiences throughout the conference as a part of the schedule. It includes poetry readings, panels on medical technology, music, art, and a CPR training marathon. Seven bands are booked for the conference, a play (Tuesdays with Morrie), poetry readings by Jimmy Baca (http://www.jimmysantiagobaca.com/) and others, and talks by the Directors of Medical Humanities from the Carver School of Medicine at the University of Iowa, Jason Lewis, MFA, Dr. Audrey Shafer from Stanford, and many more.

The conference and festival braids together three healing arts and life giving work. When groups of people get together like this – with the work and the spirit –what we get is exciting and good for everyone. I will say that the experience so far for me has been exhilarating and satisfying. It seems that doing the preparation for something is more than half the experience. Someone once said that the anticipation of a vacation is as good or better than the vacation itself. I understand that better now. We learn to love that which we study or give constant attention to, and working together we enjoy our affiliation.

In a review Albert Carter III offers a summary of Rita Charon’s Book Narrative Medicine Honoring the Stories of Illness:

Charon sees wider applications. As caregivers understand better concepts of attention, representation, and affiliation, they become more ethical, more community minded, and better healers to their patients. Patient interviews will be different: instead of following a grid of questions, physicians will converse with patients in an open-ended way. What is most important will emerge and emerge in ways that are most beneficial to the patient. Yes, this method will take more time but it will be more efficient in the long run. Bioethics, Charon argues, has been limited by legal approaches and philosophical principles. For her, narrative bioethics offers more human values in how people feel, experience reality, and relate to each other. Finally, there are implications for social justice: why are the poor underserved in this country and in many others? http://litmed.med.nyu.edu/Annotation?action=view&annid=12481

Charon’s program, notably the most well known, is a part of a medical school and designed to work with Physicians, Nurses, and Technicians. One thing I have learned is that all healers have the qualities Carter says are recommended by Charon. I think it is just important that patients embrace those qualities as well. We are all patients at one time or another, and although we may endure our illnesses or injuries in different ways and to different degrees, understanding the stories of illness and injury makes us more human to our caregivers and physicians and perhaps most importantly to ourselves.

Jimmy Baca writes about the spirit of having life stories and being willing to tell them to others:
I stress medicinal and life-dancer heart and healing not merely because they’re nice catch-words, but because they are the words of these times that can educate one, align one’s life and get it on track, make some sense of the chaos in an ordinary life, they are the words that trim away the excess, that give us strategy and approaches to challenge the economic corporate madness, that allow us grace as we embrace our own silence and learn to speak again with our lives. (Two Stories)

Of course, the language of our stories may change according to our discipline and our habits of communicating. Data, for example, tells a story. Explaining about an AED can be a story, especially when told by a 1st responder or someone who has used it.

Recently, I visited my Mother who is in Hospice. Talking with her and being with her during her end time was and is a wonderful gift. All the dimensions of being a human and being spirited radiated from her, and she has shared that with those who visit her. family or otherwise. It is not necessary, of course, that we wait for a deathbed or hospital bed to share such gifts. But often those places of shared suffering become the most obvious place for attention to “how we feel, experience reality, and relate to one another.” I believe that Survive and Thrive creates a place where gifting will be possible – intellectually, physically, emotionally, and spiritually. May we also share in the anticipation of the conference and festival though our work before and after the conference and festival.

As a first blog, then, I would like to suggest we all consider what we might contribute as a gift at the conference and imagine what it means to us. Please post your thoughts.

Rx Veeder