The Journey Towards Letting Go

Posted October 9, 2009 by Joseph Kornowski
Categories: Caregiver Awareness, Death & Dying, Spirit

Transition to Hospice Care –

My wife and I were in the Emergency Department of the hospital late one night when the issue of hospice first came up. She needed yet another thoracentesis; it was sooner than we had anticipated, and so we had not scheduled it as an outpatient procedure through the hospital’s imaging department. The pleural effusions were occurring more frequently, her pleural space filling with fluid at a faster rate, than it had previously — a byproduct of the advancing cancer. Whereas she had needed to have the fluid drained every few days, it had accelerated to every other day. But we sat in the hospital ED just a day after her last thoracentesis, the accumulated fluid making it more difficult to keep her blood oxygen saturation high enough, especially with her severe lung disease complicating her breathing. We thought that perhaps she would need to have the fluid drained daily going forward.

The hospital doctor filling in for her primary care physician asked us if anyone had talked to us about hospice. We told him no. He looked perplexed and said that it apparently was the elephant in the room that no one wanted to talk about with us. He kindly and gently explained that she was getting to that point where her need to have the fluid drained was getting to where it wasn’t really practical to keep having it drained, especially because it was accelerating. He said that, unless her oncologist had a silver bullet, any chemo she was taking wasn’t working. And, rather than putting her through more chemo or procedures that would cause her more suffering and distress, we should think about transitioning her care to hospice where the focus would be on maximizing her quality of life rather than extending it at whatever cost to her quality of life.

We cried. It was another major turning point — like when she first had her COPD diagnosis, when she was told she would have to use home oxygen continuously, when she was told a little over a year ago that she had a rare and aggressive form of leukemia. Those were all major blows to life as we knew it, to our sense of hope to continue living the life we had enjoyed for so long, to our dreams of certain travel destinations and life events that we had looked forward to. One by one, we had let those hopes and dreams go, grieving each. And now, we were at another fork in the road with a decision to keep fighting a losing battle or to seek a way to preserve whatever quality of life she could get for as long as she could. The real but unexpected upside was the relief of feeling like we were getting off the hampster wheel of running towards a goal (a cure, total or partial remission) that seemed increasingly elusive and unrealistic, though no one would come out and say so.

Redirecting Caregiver Focus –

In the weeks that followed, my wife’s pain medications were adjusted. Frankly, the hospice team proved their superior knowledge and skills at how best to manage her pain. My wife signed a pre-hospitalization DNR order so that, if she stopped breathing or her heart stopped beating, there would be no intervention to reverse that. And we agreed that, if she got into critical distress, we would call hospice first rather than 911 or jumping in the car to go to the ED. Of course, we could opt-out of hospice at any time if she wanted to get treatment to help heal (extend life), but that was not consistent with hospice.

The hospice focus on her comfort rather than life extension did include the thoracentesis she was needing every day or two, as long as she wanted to continue doing that. And that was making the biggest difference in her quality of daily life. That felt good, especially because the ultrasound team of technicians, nurses and doctors who conducted the procedure had become like family.

As I met with a new therapist during this time to help me begin to prepare for losing my wife and facing my grief, however, I realized that my wife and I had become swept up in the excitement of improving her quality of daily life. It meant no more trips to the oncologist for hours of chemo infusion, nausea, etc. But our focus stopped there. We had not yet put it in the context of her overall decline towards death, which we were no longer trying to stop or slow down. I saw that I understood that bigger picture intellectually, but I had not made the shift emotionally.

My heart sank as I recognized that I had to give up my years of focusing on her care with a view towards her healing — a cure, remission, recovery, resumption of a more normal life, more years together at some sustainable level of life quality. Working to “save her” had become my primary identity and life purpose for years. Even if I ultimately was unsuccessful (as I strongly suspected I would be), at least I would be unrelenting in my single-minded focus on saving and extending her life.

Giving up my caregiver identity as my wife’s partner-in-healing — another version of my larger role as her protector, her rescuer — was yet another loss that I grieved. With great sorrow, I finally let go of my illusion that I might be able to help save her from her fate, her destiny, and her purpose beyond this world. What remained was my role as her partner in a different kind of “healing” that isn’t really thought of as healing at all in our culture. I remembered how native cultures view healing as broader. As Kenneth Cohen writes in “Honoring the Medicine: The Essential Guide to Native American Healing”:

The efficacy of a cure can be measured; it belongs to the realm of science. The effects of healing are not as easy to quantify because healing touches every aspect of a person’s life — it belongs as much to spirit as it does to science. . . . Sometimes, the result of a Native American healing for cancer is family harmony and a more dignified passage into the spirit world.

I knew my efforts needed to be refocused on helping her realize her larger destiny and purpose, even though it meant losing her physical presence. This was the final phase of my service to her. I told my wife that my focus from that point forward would be to take her hand and put it securely, lovingly and peacefully in God’s hand.

Unfathomable Release –

On my wife’s last day in this world, the hospice team provided a high level of support and comfort to both of us. At one point two hospice nurses and their supervisor had taken over our dining room table and made it into a kind of on-site nurses’ station. There was nothing for me to do, and they sent me off to get some badly-needed sleep, promising to wake me if anything changed.

Waiting was something else that I was not prepared for. I was so used to doing as a family caregiver, acting with a sense of high urgency to help with medications, getting my wife to appointments, assisting with meals and other things she needed my help with. But as the dying process comes into nearer view, the need to “do” yields to a need to “abide.” In fact, I recognized that this was the sacred time to just be with her. We were back to our essence as human beings, our beingness, both individually and together.

I realized, even before others told me, how much waiting for death is like waiting for a birth. It is a natural process that comes in its own time — in God’s time, as my wife would say. While the fact of it is certain, the exact time is not. And so, we must just be with ourselves and our loved one.

In the early evening, after I returned from walking the dog, the hospice nurse came to get me. She said my wife’s breathing had changed, and that she thought the time might be close. So, I hurried to my wife’s side. I sat and took her right hand in mine. I recited the Lord’s Prayer, which my wife had me do often in preceding days and weeks. But now, her voice could no longer join mine. The nurse joined instead. At the conclusion of the prayer, I directed reiki to my wife to make sure she was surrounded with as much positive energy as possible. And I watched as her breathing slowed, and she took her last breath.

I had fulfilled my promise to hand her to God in love and peace, releasing her to the mystery of a larger purpose and destiny that I could no longer see or understand, her unbirthing from this world into the Unknown. The sheer magnitude of that moment, the implications, the mystery, and everything that led up to it and that would follow were simply unfathomable to me as I slowly released her hand and her form to her journey beyond my grasp.

Copyright © 2009 Joseph Kornowski

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Don’t Go Over the Cliff: Avoiding Acute Caregiver Burnout

Posted September 1, 2009 by Joseph Kornowski
Categories: Best Practices, Caregiver Awareness, Death & Dying, Hospice, Self-Care
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All effective family caregivers must learn coping mechanisms — those techniques, tools, strategies, and practices that allow us to withstand either the chronic wear and tear of continuous caregiving for a loved one or the acute tidal wave of a major change in a loved-one’s status that knocks us off center, we hope only temporarily. A recent oprah.com article talks about the “compassion fatigue” of professional caregivers as different from typical caregiving burnout in that the former is stress resulting “from taking on the emotional burden of a patient’s agony,” a reaction to the other person’s trauma that even can result in a near-total depletion of energy to perform caregiving activities.

The article suggests five ways to protect yourself from this kind of burnout:

1. mindfulness meditation
2. journaling
3. self-centering practices such as taking a number of slow deep breaths at regular intervals
4. getting out and taking breaks — either physically, with even short walks or drives, or with a phone call to friends or family
5. asking for help

A good friend who has lost close family members within the past year, and whose father is dying, made me a longer list which included 2 -5 above plus these additional suggestions to deal with the kind of acute caregiver trauma that can include preparing for end of life:

6. Jet – my friend recommends a big ball of it to hold and for under your pillow at night, along with some smaller pieces (e.g., to carry in pockets); its properties include “soaking up” negativity, fear, trauma;

7. Essential oils (a few drops applied to a tissue to smell as needed):

* “thieves” blend from Young Living – cleanses, purifies and protects;
* “present time” blend from Young Living – to stay in the present moment, with an affirmation like “it is safe to be present” or “I am here now;”
* frankincense – to overcome stress and despair (a friend who taught me reiki and trains hospice volunteers in reiki also advised the use of frankincense for those making their transition);
* “forgiveness” blend;

8. Grounding in the present — a practice that keeps you in the present moment; in addition to use of an essential oil like “present time,” something visual that when you look at it reminds you that you are present (e.g., an icon, piece of jewelry or amulet upon which you can make an oath that this will be your reminder that you are safe in this moment), and mindfulness meditation;

9. Sleep – number one;

10. Small meals every 2 hours;

11. Music – consider singing out loud;

12. Read poetry;

13. Kava kava;

14. Vitamin C; and

15. Your version of a support group.

Of course, other caregivers may have found different or additional practices, tools and techniques to keep fear, dread, negativity and hopelessness at bay when it feels like the darkness is closing in. The point is to create your own plan. Just the act of doing that begins to put the caregiver in a more positive, constructive mental state. And for those fortunate enough to have a friend who really cares and wants to uplift them by suggesting a list like the one I received, they will receive a kind of incentive and encouragement that paves the way for real hope to take hold.

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Health Care 2020 Seeks Twitter-Sized Insights on the Future

Posted August 24, 2009 by Joseph Kornowski
Categories: Best Practices, Public Policy
Tags: , ,

In another innovative online experience, the Institute for the Future’s Health Horizon’s team that brought us Ruby’s Bequest earlier this year (see prior post), has launched Health Care 2020 as part of their ongoing year-long look at the future of health and health care.

The new website, HC2020, “offers four alternative scenario videos depicting distinct, plausible directions of change over the next decade,” according to IFTF. The four different scenarios — growth, discipline, collapse, and transformation — are designed to push our thinking beyond traditional models of the future to consider a broader set of possibilities.

The four scenario videos are set in 2020 and offer a comment area (registration required) for anyone to post their thoughts or reactions in terms of whether and how we are moving either towards or away from the type of scenario described, and the illustrative “signals” for such movement.  However, unlike Ruby’s Bequest, which painted a broad and deep mosaic of “immersive narrative” based on user stories about the future of health care and caring, HC2020 takes more of a post-and-go “tweet” approach by limiting individual comments to no more than 140 characters.

IFTF encourages anyone to submit their thoughts on what they are seeing out there, and what they are doing to make the future of health and health care, including identifying threats, opportunities, challenges and responses.

One of the more interesting contributions so far has been a kind of “2 by 2″ diagram depicting the four video scenarios along x and y axes, representing accountability and change-readiness.

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Developing An Effective ER Strategy

Posted June 30, 2009 by Joseph Kornowski
Categories: Best Practices, Caregiver Awareness, Doctor Interactions, Empowerment, Patient Advocacy
Tags: , ,

A recently-released Emergency Department Pulse Report by Press Ganey Associates provides some very helpful insights on the state of EDs nationally, as well as in various regions of the country. It is a report based on survey results from patients who have been treated and released from EDs and were given the opportunity to provide feedback about their stay. It is used by EDs nationally to monitor and improve the quality of their service and the care they deliver.

Among other findings, the report shows that: (1) patient satisfaction rose in 2008, following a five-year trend of improvement; (2) average wait time decreased over the previous year, but only by a few minutes; and (3) patients spent an average of just over four hours in the ED in 2008. Frankly, this is quite impressive, especially given that the period for the 2009 report included the first three quarters of the current recession, which only has added to the demands of EDs as more people lacking health insurance may turn to the ED as their only source for various kinds of medical care.

While the report offers some suggestions to hospitals for how to improve overall patient satisfaction, my own observation and experience after dozens of trips to the ED in three states over the last six years or so, suggests that patients, themselves, and/or their family members and caregivers can do more to improve significantly their overall ED experience than they realize. The key is to understand how the ED works, where it fits in the scheme of your loved one’s medical care options, and how to optimize those things over which you do have considerable control. At that point, you can empower yourself with a strategy for ED visits that will maximize the likelihood that your loved one will get the best of what your local ED can provide.

Here is the way that I break down the issues and decisions into chronological steps (please note: this is an illustration of what works for me based on years of ED visits, and is not intended as a specific recommendation or advice for anyone else):

Step 1: When to go to the ED
This can be easy or difficult to answer depending on the circumstances. Assume that an ED visit IS going to wipe out a good four hours, expose you and/or your loved one to others who may have contagious illnesses, and recognize that there is always some wear and tear in just the ordeal of it. And even if the visit is covered by insurance, there may be a co-pay or deductible. So, assume there will be some cost involved.

What you need to do is apply some basic home assessment based on your own knowledge (e.g., known symptoms, patterns, treatments, etc.), prior conversations with doctors (if it’s a known illness and you are told what signs/symptoms to watch for), and your own comfort level.

  • The simple answer: when you have run out of other options for a medical situation that is urgent and requires immediate assistance — for example, it’s late in the evening, the doctor’s office or pharmacy is closed (but find out where the closest 24-hour pharmacy is located), you don’t have the necessary medicine/knowledge/skill to get through the night until the doctor’s office is open. This should be a no-brainer. You shouldn’t be spending more than a couple of minutes getting to the decision.
  • The more difficult answer: The factors above just aren’t that obvious. Maybe you don’t really know how serious/urgent the situation is, or the symptoms aren’t familiar to you. You actually may have the “tools” — medications at home, necessary knowledge and skill about how to administer — but you’re not sure if they will help in this situation, or how to use them (specific medications, dosages, etc.). Get a quick expert opinion: if you think you have the time, try to call the patient’s doctor or the doctor on-call for the regular doctor to advise you. But remember that what that person tells you is only advice. YOU are there at the scene perceiving what the doctor can’t except through your description or explanation. I’ve had doctors tell me that they thought I probably could wait until morning, and I knew pretty quickly afterwards that I couldn’t. Other times, a doctor (or a neighbor who is a critical care nurse) has confirmed my suspicion that I had better get my loved one to the ED. If it’s still not clear, then go. That’s what the ED is there for; they are the experts with the knowledge, skill, and tools.

Step 2: How to get there
Some people still seem to have a cultural stigma about calling 911 and having rescue vehicles show up at their house. But this isn’t a time to worry about anything other than a person’s life and the need for medical attention.

  • When to drive yourself — if someone can comfortably get into the car and withstand the trip, then maybe it’s okay to drive them. Factor in the possibility of getting stuck in traffic or otherwise delayed in a way that vehicles with red lights and siren usually aren’t in terms of additional delay in getting them medical assistance.
  • When to call 911 — Just about any other time. Remember that most ambulances today are like mini-EDs, with highly trained EMTs/paramedics who have a LOT of training, knowledge and skill. Bringing that training, knowledge and skill, and “tools” — oxygen, breathing treatments, IVs, and various drugs that they can administer — to where the person needing assistance is, rather than wasting valuable time driving the ill or injured person to a hospital, can make a big difference in the outcome.
  • TIP #1: The ED staff usually triages patients arriving by professional first-responders more highly than someone who drives in themselves (or by family or friends). This means usually by-passing the waiting room and exposure to others there who may be contagiously ill.
  • TIP #2: The rescue squad knows whether any hospitals in your area may be “closed” — a situation where a hospital is at full-capacity and accepting no new patients. You would never know that if you decided to drive yourself, and so could be further delayed in getting your loved one medical attention quickly.

Step 3: What to bring

  • Essentials: Patient’s insurance card, photo ID and medication list. Everything else is optional.
  • Leave at home: anything of value (jewelry, purses, expensive shoes/jackets), food, extra people — bringing the whole family or friends is going to be more hindrance than help in most cases.
  • TIP: Get the medication list immediately after you call 911; the EMTs/paramedics will need it once they arrive.

Step 4: What to say/ask
Either the patient or the caregiver needs to be able to describe to first responders and/or ED staff, if possible:

  • symptoms — time of onset, what led up to them, how they manifested
  • circumstances — anything the patient said or any behavior that seemed unusual OR similar to some known pattern associated with some health condition, even if not directly related to what you think are their symptoms
  • recent medical history/issues
  • known allergies (especially to medications)
  • whatever else the EMT, triage nurse or treating doctor asks — note: this may include the patient’s wishes in the event that resuscitation might be needed and to do whatever is necessary (“full code”) versus do not resuscitate (“DNR”), as may be specified by the patient in an advance directive.

A caregiver needs to stay actively engaged with the ED staff by asking:

  • for whatever the patient seems to need, especially if the patient can’t ask themselves or needs assistance
  • about any needed tests, when they will happen, in what order, and next steps
  • about any medications (pills, IV, injections) to be administered to the patient — what they’re for, any side effects to watch for, etc.
  • whether the patient will be admitted as an in-patient, what the criteria are for that, and when a bed might be ready
  • depending on the patient’s state of consciousness/awareness, to be allowed to accompany the patient wherever he/she might be taken — for tests, to another floor, etc.

Step 5: What you can do to help
EDs can be very busy places, and you are an extra pair of hands, eyes, ears, and legs that might actually be able to help move things along or monitor your loved one’s status; first, you get points with ED staff for asking how you can help rather than demanding their immediate attention for every little thing; second, you make yourself part of the extended ED team, which helps you feel useful rather than helpless and also lets your loved one know that you personally are assisting in their care. It also puts you in the mindset of learning what IS helpful, building your own knowledge. Of course, you also have to be prepared to hear the response, “Just please stay out of our way,” and not take it personally, knowing that is helping your loved one, too.

Step 6: What kind of care to expect
It’s important to understand the purpose of the ED in terms of its strategy for delivering care in order to set your expectations appropriately. One of my favorite ED physicians explains it this way:

[Y]ou will be evaluated for any number of EMERGENT conditions and after that, diagnostic interventions and procedures are limited. You may not receive a diagnosis or specific treatment because we operate in a world of “ruling out the worst case scenario.” For instance, if you have chest pain, we will do every test necessary in order to establish that your pain is not being caused by any number of life-threatening conditions (heart attack, pneumothorax, pneumonia, etc). If these tests are negative, we may let you leave without a final diagnosis (only “chest pain”). That does not mean there is nothing wrong. It only means we cannot find a cause that needs immediate attention or admission. It does help us to know if there is an agenda that the patient or family has (“just want to get an xray to make sure I didn’t break my back” or “worried I have breast cancer”). Sometimes, these concerns can be addressed directly rather than confounding the picture with a bunch of useless and expensive studies.

So, the ED is part of a continuum of care. Patients with serious problems that cannot be quickly resolved may be admitted to the hospital.  Those who are discharged from the ED without a clear or final diagnosis typically will be advised to seek specific follow-up care (e.g., with their primary care physician) as soon as reasonably possible for further diagnosis and treatment.

Step 7: Who to know and acknowledge
Get to know the names of treating nurses and doctors, at least. First, you’ll then know who to ask for when that person disappears and you don’t see them around for a long period.  Second, it begins to build rapport and personalize your interactions; after a couple of hours of seeing the same faces, you want to be able to walk up to the busy nurse working on a chart (but only if you need to) and say, “Jennifer, I know you’re awfully busy, but did the doctor okay my wife having some water? If so, I’ll get it if you show me where it is.” You’ve thereby done several things: made it personal (which it sure is for you and your loved one!), acknowledged your awareness that the place is busy and getting water for a patient isn’t all that high on their priority list compared to other things going on, shown you understand that allowing beverage or food is a matter of a doctor’s order in the ED, not the nurse’s discretion, and offered to be the nurse’s surrogate or proxy (part of the team) by getting it yourself. Chances are you’ll get a very positive reaction.

Depending on what happens during that ED visit, you may feel compelled to write a letter later to a staff member or supervisor — hopefully of praise for extraordinary patient care rather than complaint for neglect or error. Remember, you may need to come back to that ED in the future. So, don’t burn any bridges, unless you really have to — hasn’t happened to me yet.

Overall, the more time I spend in EDs, the more impressed, amazed and in-awe I am of the work those nurses and doctors do under some of the most challenging circumstances when people often are at their worst. And, anytime I do need to be in the ED, I am honored when I am treated like part of their extended team.

Copyright © 2009 Joseph Kornowski

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Support the Declaration of Health Data Rights!

Posted June 24, 2009 by Joseph Kornowski
Categories: Empowerment, Patient Advocacy, Public Policy, Technology
Tags: , ,

Family caregivers know all too well that the challenge of creating, maintaining and appropriately sharing accurate and reliable health and medical information about the person needing care can be a daunting task. Fortunately, a group of concerned doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others who share a common goal of greater health data availability have recently formed HealthDataRights.org to give people a voice in preserving their right to take responsibility for their own information and care. It is intended to serve as the portal for those who wish to endorse and support a new Declaration of Health Data Rights, an articulation of people’s inalienable right to have and share their own health data. The Declaration reads:

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

  1. Have the right to our own health data
  2. Have the right to know the source of each health data element
  3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
  4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

In explaining the need for such a declaration now, the organizers of HealthDataRights.org state: “We believe, largely because people’s right to their own health data in computable form isn’t acknowledged, we are facing a crisis in the healthcare system right now which only the easy flow of computable data and true patient engagement in their own health can avert. We further believe that we are now at an inflection point where the country is acknowledging this issue and pondering what is to be done to avert a worse crisis.”

They go on to say that by creating the declaration of these obvious and inalienable rights, and seeking endorsement of these rights by anyone and everyone who is concerned and interested, they “hope that policy makers, legislators, health care professionals, and health care administrators will listen to this message, and change their attitudes about how health data are managed, respecting the rights of people to immediate access to their own health data.”

Integral Caregiver has endorsed the Declaration of Health Data Rights and asks you to do the same by either completing the short form at HealthDataRights.org or by using the hash #myhealthdata on Twitter — your name and Twitter account will automatically be listed on the HealthDataRights.org Endorsements page.

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Support Cancer Research by Simply Rating a Video Clip!

Posted June 18, 2009 by Joseph Kornowski
Categories: Uncategorized
Tags: , , ,

The good folks at WordPress and SocialVibe have just teamed up to allow blogs like Integral Caregiver to help raise funds for good causes and specific charities through corporate sponsorship donations in an innovative way that doesn’t cost readers a dime. Now, Integral Caregiver readers can help support Stand Up to Cancer, which funds cancer research, simply by watching and then rating (with a single click) a short video clip from PowerBar. You rate a short clip, and Power Bar donates to cancer research through Stand Up to Cancer — it’s that simple! You can read more about how this works here.

In just over a year, SocialVibe has enabled people to raise close to half a million dollars for charities. I chose Stand Up to Cancer as Integral Caregiver’s cause, and PowerBar as the corporate sponsor, because they seemed best aligned with the purposes and spirit of Integral Caregiver.

Please help support cancer research by clicking on the SocialVibe “badge” in the right column, and viewing/rating a short video clip.

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A Caregiver’s Moment of Insight (a true story in the Zen Tradition)

Posted June 16, 2009 by Joseph Kornowski
Categories: Caregiver Awareness, Empowerment
Tags: , , , ,

Recently, I’ve found the Big Mind process of zen master Dennis Genpo Merzel Roshi particularly helpful as a tool to increase my awareness. I’ve read his book, Big Mind – Big Heart, and I’ve watched at least a dozen of his videos on YouTube.

On Sunday, he gave his first live web video talk. The subject was exploring the voices of “caring,” “caring deeply,” and “not caring.” As a caregiver, of course, I thought that this was just about perfect. The talk and discussion progressed with those attending live, Genpo Roshi and his students describing what caring and caring deeply meant, what it felt like, what the implications were. Collectively, we could see that deeply caring resulted in forming a strong attachment to the subject of one’s caring; and the strong attachment resulted in a desire to control the person, thing, or situation about which one deeply cared. It also brought into play fear and worry that our caring might not be good enough, that harm might come despite our caring — and then guilt! In fact, it was possible to care so much that there was the real possibility that we could make ourselves sick.

We all could begin to see how caring deeply actually could cause harm to our own well-being!  And, somehow, this dynamic of caring deeply, and the consequences of attachment, fear, worry, and guilt began to feel like shackles or the walls of a prison that we had created inadvertently from our well-intentioned caring.

Then, as Genpo Roshi typically does in these sessions of the Big Mind process, he shifted to exploring that place in us that does not care, that does not “give a s***,” in Genpo Roshi’s words. He explained that we all have that side to us, too. Yet, it is culturally taboo to acknowledge, let alone indulge, our “no heart” side.

But he took the group through it — what it meant, how it felt, to experience “no heart.” And we began to see that it had real benefits. No attachment, for one! If you really don’t care about something, you surely don’t get attached to it. You also don’t worry about controlling anything or about outcomes. For whatever it lacked in emotional connectedness and a sense of compassion, it made up in . . . freedom! No attachment, no fear, no worry, no guilt, nothing to do and nothing left undone. Everything was fine as it was. The world turned, flowers blossomed, rivers ran their course.

Genpo Roshi pointed out that this was one of the chief teachings of the Buddha: the liberation from suffering of all sentient beings — living as truly free beings — can only come about through unattachment. And, by detaching in this way, we liberate not only ourselves but all sentient beings, which then become free from our attachment to them.

Genpo Roshi, of course, then changed gears again. He reminded us that we’re human, and compassion and loving-kindness are an important part of our true nature and the path to enlightenment. So, how do we reconcile these apparently opposing aspects of us?

In his process, he describes a perspective or “voice” called the “apex,” which sits above two apparently-opposing aspects of self, and contains or holds both. What happens when we are at the apex of deeply caring and not caring at all, Roshi asked. One woman in attendance said that it allowed her to truly grieve her dear friend who had just died the day before, and at the same time say, “But it’s okay.” When we can transcend caring and not caring, we can both truly care and then let go, without fear, without worry, without guilt, as truly free and empowered beings.

I realized by this point that what I was witnessing — participating in live, in the moment — was the unfolding of something that seemed truly unimaginable. It was all the more extraordinary for me because it was deeply personal. See, 23 years earlier, a very aware (I’m sure it would be appropriate to say “enlightened”) being came into my life for a time. She had assignments and messages for me, but never spoke with me directly; instead, she contacted me only through my wife and would speak only to her. Needless to say, it was a very interesting time in our lives. And I journaled regularly during this time, not wishing to miss anything.

But I never needed to refer back to any journal entry to recall one of her more cryptic directions for me: “Learn to care, and not to care.” I turned it over in my mind countless times trying to really comprehend what seemed like a riddle. It became a kind of personal koan she had given me, and I had been carrying it around with me for over two decades, coming back to it from time to time to see if new experiences or the passage of time had provided any better understanding about its meaning. And then this past Sunday morning, towards the end of Genpo Roshi’s talk, it hit me. And I got it! In Zen, they call it an enlightened insight or kensho moment.

Of course, I was beside myself with awe and excitement. I had not taken notes because I was so engaged in the talk. Fortunately, however, Genpo Roshi’s video talk was being recorded and made available for download to a computer or on CD within 48 hours. I quickly placed my order, and checked email throughout the day to see when it would be ready for download.

When I checked this evening, I saw the note. The subject line read: “Genpo Roshi’s June 14th Talk – Apology.“  My brow furrowed. I got to this sentence and stopped reading: “Unfortunately we encountered a technical error and couldn’t keep the recording.”  To say that I was disappointed doesn’t begin to describe how it felt not to be able to review something that had opened me to the true meaning of my 23 year old cryptic message.

But I stopped and reflected. I realized that I was missing something important. I composed a reply to the email. After explaining my deep disappointment, I wrote: “I was so looking forward to reviewing the talk carefully to make sure I understood every nuance. And the fact that it is not available for that purpose is . . . fitting somehow — a lesson there, too.”

That’s the thing about true awareness insights — they exist only in the moment, and can no more be held onto for later reference than a snowflake the moment it hits your hand. I can only express my deepest gratitude, let it go, and move on . . . .

Copyright © 2009 Joseph Kornowski

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Discerning Needs Through Compassionate Awareness

Posted May 30, 2009 by Joseph Kornowski
Categories: Best Practices, Caregiver Awareness, Self-Care
Tags: , ,

For me as a family caregiver, understanding the needs of one I’m caring for starts with understanding the whole person whose needs I want to help satisfy. It is a matter of compassionate awareness and discernment of both my own needs and those of the person who needs care. This gets to the core of how caregiving can either empower or dis-empower either or both the caregiver and partner in need of care. A few quick examples from my own experience with my wife may help illustrate:

1. Simply asking – The occasional “Is there anything I can do for you right now?” or “Is there anything you need?” has value in itself, regardless of the answer, because it shows you are engaged, caring, attentive and willing to help.

2. Over-asking – Asking too often has the opposite effect. And I do this sometimes. It means that I’m worried, anxious, distracted, fearful. It’s about me and my needs, not her needs. I can’t be truly engaged and caring in a selfless way if I’m dealing with my own anxiety, fear and discomfort, and then projecting it onto her — the person who doesn’t need to be burdened with “my stuff” while she is dealing with her own pain, fatigue, discomfort, fear, depression, etc. (which I’m supposed to be helping with).

3. Anticipating – Anticipating a need validates a level of connection or closeness that can be reassuring of the underlying bond between the partners in healing, like truly sensing and then asking, in order to validate, “Do you need more pain medication?” or “Do you need something to drink?” If accurate and appropriate, it can be a very powerful way to reaffirm that you are in-sync and “in it together,” which strengthens the bond between the caregiver and partner in need. But don’t guess about someone’s needs. At best, getting it wrong can be off-putting; at worst, it actually can be alienating (e.g., “Wow, he really has no clue what I really want or need”).

4. Just “being with” – When my wife asks me, “Sit with me for five minutes,” I now know that it is an honor, not an imposition, even if I am in the middle of work (fortunately being able to work at home most of the time). She needs my true presence. If I’m not really paying attention and living in the moment with her, I can mistake this for something else and ask, “Why? What do you need?” That means I wasn’t really listening: she expressly told me what she needed, and I missed it.

As a male, I sometimes default more to my human doingthan my human being. If I can recognize and put aside my innate desire and need to “fix it,” to “do something for” her, then I’m more likely to be able to understand and accommodate her need to just have me close by. It doesn’t mean anything more than that — not that she wants some deep conversation or intense sharing. It may just mean sitting with her while she watches what I think is a silly tv show. It doesn’t matter. The point is to really “be” with her. And, when I can do it, I realize that I need that at least as much as she does. It empowers us both.

5. Self-care – This really is the pre-condition for all of the points above. Martyrs can’t be good caregivers. The paradox of care-giving is: if you don’t first take care of yourself, you can’t hope to meaningfully and effectively care for another. This means eating right, getting enough sleep, exercising, staying balanced and grounded, and only then being able and open enough to truly serve another, which will empower and benefit both of you.

Copyright © 2009 Joseph Kornowski

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The Living Matrix – New “Field Work” in Energy Healing and Informational Medicine

Posted May 25, 2009 by Joseph Kornowski
Categories: CAM Research, Energy Medicine, Mind-Body, Spirit
Tags: , , , , , , , ,

Last week, I attended the U.S. premiere of The Living Matrix, a film about some of the innovations that are expanding the boundaries of alternative medicine. While presented in a style and format very reminiscent of What the Bleep Do We Know?, Living Matrix is a much more focused and serious film that takes a thoughtful look at mind-body medicine and energy medicine, including selected older (Neuro-Linguistic Programming, placebo effect) and newer healing approaches (Nutri-Energetic System, Reconnective Healing, Emotional Release Therapy), against the backdrop of leading research in biofields (or body fields) and informational medicine.

Anecdotal recreated stories of various healings, animations, and interviews/narrations by some of the pioneers in energy/information medicine research and modern clinical approaches lead the viewer through a thought-provoking, and almost dizzying, tour of some of the latest thinking and available treatments.  For me, it brought a progression of inspiration, frustration and resolution.

First, I was inspired, both by the possibilities presented in the film itself and by the members of the audience who had brought their own hope and enthusiasm to the small downtown theater on that night to form an ad hoc community of kindred spirits.  I could feel the courage and eagerness in the audience during the film, and hear it in the questions asked afterwards of the panel of some of the participants in the film — from those looking for answers to personal or specific medical problems for which conventional medicine had not provided satisfactory answers, from practitioners of various CAM treatments or approaches, from researchers, and from others just curious and interested in learning more. The woman sitting next to me told me that her energy healing teacher had told her about the screening; the woman said she was also a reiki practitioner. I didn’t bother telling her that I was, too (I probably could have tossed a Milk Dud anywhere in the theater and hit another one).

Second, I was frustrated on several levels. The film, itself, seemed to be limited in its focus to just a handful of the newer manifestations or approaches in energy medicine (see NCCAM’s definition here). Also, the various researchers and practitioners who were featured in the film used various terms — body fields, biofields, information, energy, virtual particles, quantum theory — in ways that often were confusing or overlapping. It made me realize that we don’t yet even have an accepted taxonomy for the various phenomena that we’re talking about when we try to discuss this type of CAM (even “CAM,” itself, seems so inadequate and misleading at this point). So, it was a reminder that, despite the new research and approaches being featured in the film, this field has not progressed all that far in key areas since the early days of homeopathy, qi gong and reiki. In that respect, I think my own frustration was rooted in impatience at the slow pace of scientific validation and broader mainstream acceptance of even those more established practices, let alone the new ones.

Finally, I somehow had a renewed sense of resolve as I left the theater, maybe as a result of both the inspiration and frustration I experienced. Participants in the film including Marilyn Schlitz, President of the Institute of Noetic Sciences, and Rollin McCraty, Director of Research at Institute of HeartMath — both of whom were on the live panel that evening to answer questions– are doing cutting edge research on consciousness and healing. There is a palpable excitement in hearing what they’ve learned and knowing that you are involved with something of great potential that is still in its infancy in our culture or — perhaps more accurately, as some argue — part of a new shift in our consciousness, a tipping point in our individual and collective awareness, that will open up new possibilities.

In the week since I saw the film, I have read Dr. Eric Pearl’s “The Reconnection” and spoken to a local practitioner of Reconnective Healing, scheduling a session for my wife. I don’t know what to expect or where my ongoing explorations will lead. I just know that I have a role to play, and I am committed to its continued unfolding and willing to explore its unimagined implications.

Copyright © 2009 Joseph Kornowski

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The Global Impacts of Caregiver’s Heart-Mind

Posted May 15, 2009 by Joseph Kornowski
Categories: Caregiver Awareness, Empowerment, Energy Medicine, Meditation, Mind-Body, Technology
Tags: , , , ,

A national demonstration project in the summer of 1993 showed that a group of up to 4000 Transcendental Meditation practitioners in Washington, DC, successfully lowered the violent crime rate in DC by 48%.

Today, projects like the Global Consciousness Project and the Global Coherence Initiative are seeking scientific validation of the effects of large scale group consciousness on the physical world by examining the subtle correlations that may reflect the presence and activity of consciousness in the world.

These initiatives are based on the hypothesis that: (1) the heart radiates the largest rhythmic electromagnetic field in the body; (2) that field radiates outward from the body; and (3) that field includes encoded emotions. By shifting our emotions to be more appreciative, compassionate, caring, giving and loving — what I think of as “caregiver’s heart-mind” — we create a more positive state of heart-brain “coherence” that is embedded in the heart’s electromagnetic field and that can create positive impacts on those around us and the planet itself. The way this works is explained further by Rollin McCraty of the Institute of HeartMath courtesy of the Institute of Noetic Sciences in the video below.

As stated by the Global Coherence Initiative, “GCI researchers’ goal is to show that massive amounts of positive coherent energy can influence global consciousness in positive ways.” Ultimately, GCI seeks to unite people “in heart-focused care and intention … shifting global consciousness from instability and discord to balance, cooperation and enduring peace.”

GCI currently is seeking to take the next step toward this goal by acquiring a search-coil magnetometer and amplifier for creating their global coherence monitoring system, at a cost of $8,100. Those wishing to donate toward this effort may do so here.

Copyright © 2009 Joseph Kornowski

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