How could I not know I was this sick?!

IMG_0551How could I not know I was this sick?  Looking back, it’s pretty obvious to me.  This image of a person dragging himself through an ice field on his arms and legs, crawling for miles…I picked up this image in 2009 (!) during a collage prayer card day. My subconscious knew something was wrong, that I had burned out somehow.

Docs had told me back then that I had chronic fatigue syndrome.  It got worse and worse, year after year, until I could barely get through my day as a retired woman.  Finally had to hire some help cleaning our house, I couldn’t do it myself.  Mostly I felt embarrassed and tried to hide it, even from myself.  My world got smaller and smaller, as one beloved activity after another got dropped into the “I can’t do this anymore” bin.  My lower legs and feet began to swell and it hurt to walk even down to our mailbox at the end of our driveway.  No more walking our dog, Tara, on a regular basis.  Why didn’t I demand more assistance from Kaiser?  At a certain point, I was too sick. And before that? With chronic fatigue, there is nothing to do.  I accepted that diagnosis as being accurate.

In my journal from June well over a year ago, I reported “I think I am dying.”  By then, dying did not seem like a very long step.  However, I have a tendency to brush aside things like this report from myself, either by not listening or choosing not to respond.  I have learned not to entirely trust my conclusions. I saw all that fatigue as a deficiency in my own character.  This is a very old childhood pattern.  So, that report did not show up on my radar, internally, beyond those few written words.  It’s a little like a Facebook meme that you see one moment on your site and then it’s gone as new ones take it place.  It faded from view.  I kept crawling through life, slower and slower.

Deeper underneath there is a voice that explains, “You were so tired and depleted that you simply could not gather up the strength to try to deal with that other part that warned you might die.”  A deep shattering kept occurring, evaporating my will to live. Dying seemed like a good thing.   A frail voice would pipe up: “Who cares? You’re not worth the effort. Why bother.  I won’t try and then lose.” It’s a voice that sucks me down fast. Very old voice. Depression is one of the key symptoms of kidney cancer.

Sometimes I ask myself: how does this cancer thing work?  There is a place where the will to live connects (lightly, in my case) with the evaporating part.  It reminds me of when the tidal waters come up the Willamette, and meet the waters coming off the Cascades – there is a moment when the waters stop, and the surface is like a mirror. They embrace with a million little silvery arms. Then tiny little wavelets appear, the water turns to mercury, and then the river turns back the other way, back upstream.  The master ebb and flow, twice a day around here – a potent, magical, fleeting moment.

I wonder if within us, we each have a tidal effect of the will to live and the longing to die.  As long as they are in balance, we have health.  Several times I recall my wanting to die, the evaporating part, showing up in my awareness. This cancer has been growing for at least the past six years or more.  The cancer, to some extent, feeds on me feeling despair of ever being well again. It is a lethal feedback loop. I have been out of balance.

Is it possible to simply turn that imbalance back to balance, and let the body slowly readjust?  Would the cancer either slow down or better yet, go away?  Turning the tide of cancer. I like it as a metaphor for healing.  I can’t seem to relate to the more common ones of war… I am seeking a natural key to this process, one that is non-violent, that I can watch with mindfulness, knowing that the mind and the body affect each other intimately, profoundly.

This doesn’t yet solve my underlying question: did my feeling like dying come after living with the cancer for awhile and is therefore a symptom, or did that feeling actually cause the cancer. Or both.

Reading The Emperor of all Maladies: A Biography of Cancer, by Siddhartha Mukherjee, he reports that Claudius Galan, a Greek doctor from AD 160, wrote about the black bile that is cancer.  Galen links the word Melas (black) with Khole (bile), hence melancholia.   For him, depression and cancer, psychic and physical diseases of black bile, are intertwined.  He proposed “that cancer was trapped black bile, static bile unable to escape, and thus congealed into a matted mass”,  just what I studied in Chinese Medicine: stagnation can cause disease. This feels accurate to me.  And is nothing that my oncologist can affirm or acknowledge or do anything about.

I’ll be watching to see what is stagnate around me and within me.  What needs to be freshened up, turned inside out, removed from my life, embraced differently? How can I let the depression energy escape and/or stop forming?  Selling our house, downsizing and moving to Rose Villa, an unusual retirement community, has started things moving.

Looking for the shimmering, too, and letting in that awareness as often as possible.  I tell friends “I am swimming in a sea of shimmering grace.”  I just have to remember that, dial it in.  Remember the View.

I’ll be asking myself these questions for awhile yet.

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3 thoughts on “How could I not know I was this sick?!

  1. Susan, along the lines of “turning the tide of cancer,” I *highly* recommend Lawrence LeShan’s book, Cancer As A Turning Point. I discovered the LeShan book when a close friend was diagnosed with esophageal cancer about 16 years ago.

    LeShan’s focus on meaning and purpose and what’s *right* with you is key to living a fulfilled life, however long one may have left.

    “Unlike traditional medical and psychotherapeutic approaches based on the question “What is wrong with you?” [LeShan’s] therapy asks, “What is right with you?”

    ———————————————————————————————————————-

    1. Cancer As a Turning Point: A Handbook for People with Cancer, Their Families, and Health Professionals
    by Lawrence LeShan
    http://www.amazon.com/Cancer-As-Turning-Point-Professionals/dp/0452271371

    “Psychotherapist Lawrence LeShan has worked with cancer patients for more than thirty-five years and his research has led people with cancer to find new, effective ways to fight for their lives. He has put his findings–full of meaning and purpose–into this revised edition that shows how psychological change, along with medical treatment, mobilizes a compromised immune system for healing. Included is a life-transforming workbook of hands-on exercises designed to help readers evaluate their inner selves and teach them how to get the most out of their immune systems by leading fuller, richer lives.”

    2. LeShan’s website for his counseling services

    http://www.cancerasaturningpoint.org/index.html

    Cancer As A Turning Point:
    Mind-Body Psychotherapy and Counseling
    for people dealing with cancer

    Lawrence LeShan, Ph.D.
    Ruth Bolletino, Ph.D.
    Mary Bobis, LCSW – Stephanie Koraleski, Ph.D

    Our aim goes beyond “support”: it is to enhance and extend life.

    All our services, based on the work of Lawrence LeShan, are designed for those in the U.S. and abroad:

    * people currently dealing with cancer or other illnesses
    * family caregivers
    * former cancer patients
    * people wanting to maintain or improve their health
    * psychotherapists and other health care professionals
    * anyone wanting more enthusiasm, meaning and fulfillment in their life.

    From over forty years of clinical research, psychologist Lawrence LeShan, author of Cancer as a Turning Point, developed a new kind of psychotherapy. Unlike traditional medical and psychotherapeutic approaches based on the question “What is wrong with you?” this therapy asks, “What is right with you?”

    Its focus is that you find and commit to your own best and natural ways of being, relating and creating that bring zest, meaning and enthusiasm to your life. When people make certain kinds of psychological and life-style changes, they appear to create an inner “healing climate” that maximizes their potential for health.

    Working toward creating a richer, more fulfilling life appears to be far superior in survival time to that of traditional psychotherapies focusing on psychological problems and past causes. For people with cancer, this approach often increases their positive response to medical treatment by (theoretically) stimulating their self-healing abilities. Although the approach was originally developed for people with cancer, it has been shown to be effective for others as well. Those who have recovered appear to increase their chances of non-recurrence, and those who are well, their chances of maintaining and improving their health.

    Feelings and thoughts neither cause nor cure cancer, but they are integral aspects of the whole person. As you reshape the ecology of your total being with meaningful psychological and lifestyle changes, you can mobilize your own life force – whether dealing with a life-threatening illness, generally improving your health, or working toward a life of greater enthusiasm and zest.

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    1. Trudy, I have read LeShan’s book, and found it helpful. Shortly I will have a page on my blog that will set out resources I’ve found helpful, to share with others here. His will be included in that. Thanks for thinking of me, and feel free to share away here.

      Like

  2. Read with a shiver. Always somewhere asking myself much of the first part of your post. The growing “no longer” list/ CFS or not or what?/Like Susan? etc. to weariness to leave it alone ’til (if) impossible not to.

    Like

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