Here’s the Introduction to my long-planned “On Healing” thread which was intended originally to be about healing from my chronic physical illnesses. I have about a gazillion rambling pieces I’ve written but have been too chicken to post. Now that I have taken the leap and posted three of the planned five in the Maxim Matrix series about my fraught growing-up life, I guess I should be over any fears about writing about my personal life.

Except after the Maxim Matrix about Whistling I got a lot of friends and family contacting me, which for a writer who wants to be read is lovely and exciting. Except I had thought that around five people ever read my blog, so I was flustered. Some of the comments made me realize people might have misunderstood some things I wrote, so I posted a coda. In the Maxim Matrix series, I’ve been dipping my toes into the water to see how it feels to write publicly about my past with some “tip-of-the-iceberg” stuff before investing any more time in my childhood memoir manuscript. I am definitely not ready to go beyond tip-of-the-iceberg yet.

Though I’m not ready to begin the memoria officiale of my healing journey, in recent weeks on social media I began putting up some posts titled “Not So Jazzy’s Chronic Illness Quote Revisions.” The Maxim Matrix series had me obsessing about how well-known quotes have so deeply affected my thinking and behavior in my life. After the most recent one and a whole bunch of “likes,” I decided I’d use them as the basis for the beginning of a new thread on my blog. The Not Too Jazzy Journal tagged “On Healing” will be a journal of which this post serves as the introduction.

In mid-December 2020, I led a small group in a shamanic journey. Earlier in the day, I’d read a poem by David Whyte (one of my “new” very favorite poets). My response to it had profoundly disturbed me, so I decided to share it with my journey circle as the sparkle point for our first journey that evening (I like to think of what most people call an “intention” as a “sparkle point.”) A recording of him reading it happened to be available on YouTube, so we listened, journeyed, and shared our experiences. What I learned in my journey startled me.

The poem, “Start Close In,” asks readers–among other things–to

Start with your own
question,
give up on other
people’s questions,
don’t let them
smother something
simple.

When I’d read the poem in a deeply contemplative mood that morning, the question that emerged immediately in my mind was, “What if they were right?” I’ll leave out the details of who “they” were; suffice to say there were a lot of “theys.” As soon as the question arose, I had the sensation of being kicked hard in the gut. I froze and felt as if I were choking. It was like experiencing a nightmare. After recovering from all this, I decided that if the poem evoked so much power for me, it would offer rich fodder for a shamanic journey. It did. (I’ve linked to the recording above if you click on the poem’s title. It appears in Whyte’s collection, River Flow: New and Selected Poems, 2006.)

For readers unfamiliar with shamanic journeying, I’ll describe it in an extremely bare-bones way. Shamanism is an ancient tradition of healing. It exists in every culture although it is called by different names and has different rituals and traditions. In the 1950s (I think) an anthropologist, Michael Harner, studied shamanism in many cultures and became interested in the common threads that he noticed. He founded something called core shamanism and the Institute for Shamanic Studies, now the Foundation for Shamanic Studies, which has brought shamanic practices into mainstream awareness in the United States in the past several decades. A shaman is a person recognized by their community as a healer. As a central part of their healing practices, this person journeys to alternate realities to connect with spirit guides and teachers by shifting their consciousness, sometimes by using plant medicines such as ayahuasca. The healing may come about in various ways. The shaman’s personal spirit guides may provide the healing directly to the person(s) or place(s) in need, or they may direct the shaman with teachings about what specifically needs to be done. The spirit guides may also provide healing to those in need via those person(s) or place(s) own spirit guides and teachers.

I knew virtually nothing about shamanism until 2015 when on a retreat in Arizona I was led on my first shamanic journey though it was not named as such. Later in the day when I met with my mentor, I told her I recognized the experience as similar to ones I’d had hundreds of times since I was a young child. At age seven I’d made the mistake of describing what I experienced to someone, and ever after knew I was probably insane. I never spoke of my experiences again. Forty-five years later, I was being told that it was a good thing and healing. I was utterly flummoxed. She told me about shamanic journeys and about a man named Soaring Eagle to whom she introduced me. This information–always there but until then not in my orbit–was part of a paradigm shift in my life. I have been studying shamanism since then, and have been privileged to work with some deeply gifted people.

On December 13, 2020 we opened our circle with drumming, invited in helping spirits, and checked in with one another. I told our circle–there are three of us–about my experience that morning and asked if they’d be interested in listening to the poem and using it to spark their own journeys. They were. We don’t use plant medicines to alter our consciousness; we use drumming. Prior to starting the journey drumming, we set an intention. Mine was to ask for insight from my spirit guides about my response to the poem that morning: Why had I reacted so strongly? What did I need to know about this? My guides’ answer came so boldly and unequivocally, it startled me.

My three guides told me: “You asked the wrong question. That is why you reacted the way you did. The question you need to ask is, ‘What if they were wrong?'” The remainder of my fifteen minute journey was spent sitting quietly with my guides as I contemplated this complete turnaround of my morning’s experience, and how and why it felt so dramatically different from what had happened to me earlier.

When we returned from our journeys into our zoom circle and shared with one another, each of us had experienced such richness of insight, we did our second journey as an extension of the first. In fact, the poem “Start Close In” inspired so much interest and energy in each of us that we decided to meet again the next night, and the next. So began an intensive cycle of gatherings 2-3 times per week that, for more than four months we included this short, rich poem as part of our ritual. During this time we each weathered crises, and gradually realized that though we’d been friends for awhile we had created a deeper connection we all find precious. Our gatherings have now shifted focus to something dramatically different that is opening new kinds of healing, but that is a different story to tell that’s not yet ripe.

The four months I spent journeying using the David Whyte poem as my sparkle point has had a synergistic effect along with so much else I have experienced. I have come to an important place in my healing process, which is why I feel like I can start posting this journal. I call it “Not Too Jazzy” because in good jazz all the separate instruments listen to and respond to one another in really creative and interesting ways; they’re in compassionate–and passionate–conversation, and it all flows. My “jazz” is not too good yet, but it’s getting there.

I have done a great deal of healing “work” of many kinds since my health began to completely collapse in 2012. I’ve come to call it a “slow implosion.” I can’t really pinpoint a specific beginning; it’s a bit like the chicken-or-egg conundrum. The proverbial “straw-that-broke-the-camel’s back,” in my mind at least, was a fall down the stairs in early 2012 when I sustained a moderate ankle sprain and bruised hip. I nursed myself, as usually do. The injuries healed and by Spring I’d begun to train for a 150 mile cycling marathon I’d set as a goal, but I was starting to experience some pain in my pelvis and hips. One day in July at the end of teaching an all-day graduate seminar, I was in such excruciating pain I could not walk. The cycling ended and the journey of chronic pain and illness began.

Over time, investigative testings of various sorts turned up invisible things going on in my system (biotoxin illness for one example, likely from the moldy barn building I worked in for years) that suggested the minor accident of the fall down the stairs may have simply tipped the balance in my system over into the implosion into what became severe chronic illness over time. With all the incredible medical knowledge we have these days, it’s stunning how much we still don’t have a clue about, especially when it comes to understanding the onset and treatment of chronic illnesses. My implosion, like a domino effect, began with gradually increasing physical pain that became unbearable. It progressed to crippling fatigue, then to an emotional breakdown.

When I got sick, I had been happily married for eighteen years and had two school-aged children, a dog, a fairly large extended family with whom I was engaged, a full-time career, a busy social life, an active volunteer life, an varied and fun outdoor life, and deep connections in my community. All this gradually fell away. Nine years later, all that is left of that rich life is my relationship with my children and the few family members I talk with on the phone occasionally, some random Facebook connections, one friend I correspond with in old-fashioned letter form, and another one I see on Zoom weekly. Literally everything else, except for the occasional blip, has evaporated. It has been a vertiginous experience to have what I believed was a solidly rooted and flourishing life implode.

I now live alone in a lovely old farmhouse, 80 miles from where I made my home for thirty years, and I am learning how to be myself in a new way. Nobody can teach you how to do this.

Physicians say, “Take care of yourself,” but they have no explicit instructions for how to do so because they have no idea how to treat what ails me. It seems every few months there’s something new to try, and I do, though the results have so far been inevitably discouraging. My physician is, I think, close to throwing up his hands in defeat. Sometimes I think I ought to have chosen the name “Resilience” instead of Jazz when I changed my name. I’ve seen a lot of physicians of various trainings in nine years. They each had different and often conflicting answers for me. None of them were solutions, not even partial ones. My current physician of functional medicine has offered me the best I’ve had of thoughtful and overall care, but even he is close to the end what he’s got and is sending me off to one last specialist to answer a question he can’t. Because of some concrete findings he discovered, I’m still following some bizarre protocols that take a long time to impact or not (one example, drinking liquid rock daily…yes, not kidding).

Psychotherapists, especially mine, are more helpful overall than physicians who mostly are focused on fixing one’s body (which of course is essential at times, but there’s more to being a person than a body). Psychotherapists get the bigger picture that one’s mind has a lot of sway over one’s body–physicians rarely get that. For example, using a CD from Peter Levine, a psychologist, that I think was called Freedom from Pain (Levine is best known for his book Waking the Tiger, 1997) I learned to use my mind to manage my sometimes excruciating pain. That was long before I was sent by a physician to Massachusetts General Hospital’s Benson Henry Institute for Mind Body Medicine. I exhausted myself for months trekking in and out of Boston on the train to see pain specialists only to finally figure out on my own that they were putting me through these wildly complicated protocols that really boiled down to what I’d already learned listening to a CD I got out of the library several years previously.

I’ve been in psychotherapy for nearly eight years and my ever-patient and compassionate therapist says all the right things over and over again. I do trauma therapy with him which is its own kind of thing, but we also work on lots of other things like coping with life. Interestingly, much of what he says repeatedly echoes–in different words–the same themes that I hear again and again in my daily guided meditations (I have been meditating for nearly nine years). He is an IFS therapist. IFS stands for Internal Family Systems. Founded by Richard Schwartz, Ph.D., it’s a brilliant form of psychotherapy that is non-pathologizing in nature and embraces an understanding of the natural multiplicity of the human psyche; that is, we are all made up of parts of ourselves that are sometimes living in harmony, sometimes in conflict. The therapy helps us sort this out. And while we’re sorting ourselves out, it has the most wonderful added benefit of inspiring brilliant new ways of understanding and communicating with all the people we encounter in our lives as well.

Three of Internal Family Systems (IFS) deceptively simple basics are words/concepts that echo what is familiar to anyone who meditates. Unfortunately, as with so many things of esoteric nature, language gets things confused, and IFS is no exception. First, IFS distinguishes the concept of a SELF (capital S) from self (lower case s). The SELF has many names among mystics and meditators, examples include “higher self,” “awakened self,” “awakened awareness,” and even just “consciousness.” It is a word meant to conceptualize that there is something that is spacious, timeless, and immaterial, something that is not affected by the storms that wreak our day-to-day lives, yet is fully aware. It is often mistaken (in my opinion) for a detached kind of cold awareness. I think this comes from a terrible misunderstanding of the Buddhist concept of non-attachment. IFS distinguishes SELF from self, which is the many parts of ourselves which make up our busy minds pulling us this way and that in our thoughts and emotions. Psychologists sometimes call these parts our ego.

The central thrust of IFS therapy, as it is in any meditation practice, is to become a SELF-led person. That is, to mindfully invite our awareness to remain open so that the SELF can be at the center as much as possible, leading the self/parts in a graceful, harmonious dance instead of having them chaotically vying for the center stage all the time, as is the usual case for most of us.

The SELF in IFS vocabulary has a variety of characteristics. For some reason they’re described as Cs and Ps. I thought there were only four Ps but when I looked it up to check I found five described by some psychologist and I liked the added 5th (playfulness). Again, for most meditators these will ring familiar notes:

Characteristics of the SELF

Calmness. Curiosity. Connectedness. Compassion. Courage. Confidence. Clarity. Creativity.

Presence. Patience. Perspective. Persistence. Playfulness.

Eventually truths penetrate even the thickest armor and the brainwashed minds, such as mine. I am grateful for my therapist’s patience in repeating the same things to me over and over again. I am grateful that I have a meditation app that doesn’t require me to pay a guru to do the same thing three times every day. I am grateful that I have made new and understanding friends who know me well enough now to say, “Jazz, your court of inner critics are making too much noise right now,” and an offspring who reminds me frequently that being disabled does not make me less of a person. I am grateful that I am finally accepting that I can open up to finding new ways to feed my soul that don’t require the physical stamina my old ways did.

And So

What finally put a crack in my thick armor and led to me being able to start this journal now was the crisis I survived last summer. I’m middle-aged, so I have all the vague anxieties that emerge occasionally about cancer and heart disease in addition to all the doom and gloom prognostications about my chronic illnesses. I’ve also had many times in life when I feared I might die. Near-drownings, gales in small sailboats, a close encounter with a bear, etc., so when I get sick or injured, I don’t freak out too much unless it’s severe. Last summer, I felt ill and had a fever. When I awakened on my dining room floor with no recollection of having passed out, I was practical enough to call an ambulance. Strangely, after eight hours at the ER clinic, the doctor said I seemed better and asked if I wanted to go home. I did, but something made me say, “No, I think that would be a very bad idea.” They transferred me to an inpatient hospital where I was diagnosed with sepsis which quickly progressed to septic shock.

I’m telling this story because it relates directly to the shamanic journey I described previously. When the doctor in the ER said I looked better and asked if I wanted to go home, I felt I should say yes. I didn’t want to take up bed space, especially during a pandemic, if I wasn’t sick enough for a hospital. I thought, “What if he’s right?” His words made me doubt myself. I also felt very ill and knew I had been getting sicker for five days, had passed out for some unknown time, and lived alone. I don’t know what made me do it, but I trusted myself and held my ground.

When I was in the hospital, people kept saying to me, “You are very, very ill.” It took a long while for me to translate that what they really were saying to me was, “You ought to call your family because you might die.” I would have appreciated it if they had been more direct. Probably because I had a high fever and was sort of traumatized, I didn’t catch on to the true severity until I asked one of the technicians about the machine she was attaching to me (one of many). She said, “Oh, your bloodwork showed that you are in heart failure, so this machine is going to see if that is accurate.”

I kept thinking how deeply ironic it was that I might die, not of Covid, not of all the many things I’d ever been afraid of or worked so hard to avoid. No, I was going to die because I hadn’t trusted myself.

In June I’d had a UTI and taken an antibiotic but still had symptoms. I’d been tested again, but the test was clear. I felt certain I still had the infection, but because I also have another condition of producing oxylate crystals (microscopic kidney stones that can cause some discomfort when passed), my doctor said I was likely experiencing symptoms of that rather than a recurrence of the infection. I didn’t get tested again because, “What if he was right?” The UTI symptoms abated, and I assumed I’d been wrong. Though I became ill less than a week later, I failed to make the connection between the UTI and the fever, vomiting, and pain. The infection had moved to my kidney which causes a different set of symptoms, including something called “flank pain.” If left untreated, it leads to sepsis and death. In the hospital when they were trying to figure out what happened, people kept asking me if I had flank pain, and I kept saying no. I thought my flank was somewhere in the neighborhood of the side of my butt. Eventually I asked the hospitalist “Would you please point to the place on your body where your flank is.” Now I know. My entire ordeal could have been avoided if I had trusted myself and insisted on another UTI test. If I had not defaulted to, “What if he is right?”

I survived septic shock. My organs were all shutting down, then they weren’t. Massive doses of antibiotics plus. There was a terrible week when they pumped me full of steroids and I had “steroid-induced psychosis” which was miserable to experience but sort of darkly humorous from the right perspective. My psychosis took the form of a hypermania mixed up with flashbacks that made me difficult for a team of folks to settle–challenging because I was connected to all sorts of deep IVs. In this tiny hospital room jammed with equipment and a loud roommate continually shouting into her phone over top of her blaring television, there were now a team of nurses trying desperately to appear like they are not holding me down while one of them is paging Psychiatry. The poor Psychiatry intern is instantly overwhelmed so the Head of Psychiatry joins the crowd.

I watch this conference of 6 people gathered around my bed discussing what to do about Jazz because I am too sick to be admitted to Psychiatry and too unstable to be left to my own devices on the regular ward. On some level, I think I was so horrified by being in this spotlight and the subsequent round-the-clock psychiatric babysitters and extra nursing check-ins, and the entire hospital nightmare in general that my system decided it was either die or recover. With the help of the drugs of course, it opted for recovery.

When I was discharged in my hospital scrubs, the taxi dropped me at my house. I was so weak I collapsed on the ground before I could get in the door. I lay there for more than an hour looking up at the sky, glad it was summer and thinking, “I’ve done it again.”

When I’d met with the social worker in the hospital, I had this gut feeling I was not strong enough to go home on my own. I knew I should go to a rehab facility, but the social worker talked me out of it and assured me that home health people would come to help me. Again that internal voice got me: “What if she’s right?” She wasn’t. Nobody came for days, and when they did, they had to stop because the people she’d arranged for me were not covered by my insurance. Despite my desperate attempts, I could get no further home health care. I was on my own. I felt grateful that some people came up to help out a bit now and then with food, and one friend mowed part of my overgrown lawn, but I was alone and in bed for the better part of two months, unable to drive anywhere or do much at all because I was so weak. It wasn’t that people didn’t want to help. It was that a pandemic was surging, severe travel restrictions were in place, and all but one of my friends (who lives in her own ongoing crisis) live far and out-of-state.

This is when the crack in my armor began to open. Maybe because there weren’t my usual distractions or mood lifters. I couldn’t go outside to be in the garden or lie in the hammock or go to the pond or the beach. I couldn’t read or write or work on the computer. The only audio book I could process was Charles Kurault reading The House at Pooh Corner and even that only for ten or fifteen minutes at a time. I couldn’t see my therapist because he was working on new licensure. All I could do was talk briefly on the phone, text, and noodle around on facebook for bits of time. Most of the time I couldn’t even remember the conversations I had. I had no idea whether I would regain my former level of function, even as compromised as that was. It was a frightening future to contemplate, and I had two months with nothing but time to contemplate it.

I got through in tiny steps. The ugly details of personal care challenges, I’ll skip; I managed but I’m glad there were no witnesses. I had a small Escher puzzle of sea horses on my shelf that I laid out on my desk. It took more than a week just to lay it out. I’d sit every morning for a few minutes at the puzzle. If I got one piece placed it was a victory. It took me a month to do a 9×12 puzzle, but I worked my way to sitting for 15 minutes at a time. I did the same with the audio books. I graduated from The House at Pooh Corner to The Hobbit over the months. Eventually I could read. There were times when I could not process language at all, and I tried working on the alpaca sweater I’d been knitting but that overwhelmed. Then I tried crocheting a square which worked. A friend said she wanted crocheted coasters, and I’m always motivated by others’ needs so I crocheted four and eventually mailed them off to her. That made me feel useful. I played my smaller Native American flute which I can do lying flat.

It’s funny; I’ve had lessons in rehabilitation in my past, but in much smaller ways. And I got poor marks all around, though I did pass. I decimated my finger in an accident. Once the splint came off, the rehab was excruciatingly painful and slow, and it was at least three years before I had full use of the finger again. The same thing happened when I shattered my elbow, had my first incident with spondylolistheses, injured my neck, and on and on. Rehabilitation is just that, tiny incremental steps taken with patient and gentle self-compassion. I am a poor student, but I am learning.

Lying in bed alone all that time, uncertain about what my future would hold for me was the beginning of my of my surrender to what is. I was exhausted by the constant fear war in my head about what to do. I couldn’t drive and I lived in a rural community with no public transport and I knew nobody local; I could barely walk and my house was not particularly accessible to my wheelchair and there was no food delivery; my mental capacities were significantly diminished. And yet, I was surviving day-to-day nonetheless. At some point clarity (an aspect of SELF) emerged through the chaos.

My anxieties about what might or might not happen and what I should or should not do about it were making such a raucous noise that they were completely drowning out my present reality. The present reality was this: I was alive; despite the profound effort of it, I was able to keep myself warm and clean and well-enough fed; I could call someone if I had an emergency; I had some friends and family who cared about me; and my present state of weakness and even mental incapacitation was not wildly unusual for someone who had survived what I did.

This was the beginning of my realization and acceptance that from the time I was a little kid, I have been at war with myself. In IFS terms, my self has been at war with my SELF. I live in constant self-doubt and seem to forever turn my back on my intuitive knowledge, and fail to live comfortably and confidently in my own truth. Instead, I gag down and/or gag on the barrage of “shoulds” that come from every direction, some in the present and many still alive from the past. These “shoulds” are often in conflict with each other. I have lived my life in crossfire. Over many years, I’ve armored myself to avoid the pain of it.

The armor grew in layers over time, so thick and strong I stopped recognizing it was there. Every once in a while though, there would be a moment when it would crack open briefly. I would feel the utter wrongness of everything about the way I was living, and it was so terrifying and overwhelming that the armor would slam closed again. When it cracked open last summer, it didn’t slam closed again, and I’m glad of it. It’s an overwhelming prospect to be peeling away all those layers and untangling the knotted chains that hold them in place, but it’s also liberating to begin shedding all that weight.

My spirit guides led me truly when they told me I had asked the wrong question and said the question I should have asked is, “What if they were wrong?” I have explored that question over months, and the explorations have opened my armor wider and untangled many knots in the binding chains. Just a month or so ago whilst exploring more of David Whyte’s poetry, I came upon his gem called, “The Well of Grief” which in some synchronous way segues seamlessly with “Start Close In” on this particular stretch of my healing journey. Here is David sharing “The Well of Grief.” Diving through those waters into the well of grief is not for the faint of heart, but I’m coming to believe the courage to make the dive, or the leap, or the willing fall is worth the journey though it be a fearsome one.

2 thoughts on “Not Too Jazzy: Introduction

  1. Jazz, such an amazing journey you’ve shared. I’m humbled by your honesty and hope that your difficulties are fewer and health improves rapidly. In spite of the encumbrance of the body, you’re still one of the strongest women I’ve ever met. Love and prayers your way…Kathy

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    1. Dear Kathy, thank you so much for your kind words. YOU are one of the strongest women I’ve ever met, and my love and prayers are with you as you journey through your illness with such grace and acceptance. I hope I can see you when I come to the North Shore for some medical appointments in June.

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