Sunday, August 15, 2010

Wounds and Scars

[commenter]  The poem is good, but it seems a bit hard to get a handle on in my book.  I’m not very esoteric, more practical and hard nosed … and hard headed.  So I get the idea that God won’t give us what we cannot use, and maybe we’ll know more later than now; but how does one “live the questions”?  That I don’t get.

Maybe I should just tell you the questions that I am living so that you can see the Rilke quotation in the context that it became appropriate to me:  Last month I hit another boulder in the path of my psycho-spiritual journey.  Instead of climbing atop the rock and surveying the landscape around me, instead of taking the long broad view, I curled up into a little weepy heap underneath it, letting its looming shadow overwhelm me. 

I know and have known for months that I am not 100% recovered from hypoadrenia, not even really back to where I was before I realized that something was terribly wrong three years ago, but I've been pretty functional for most of the last year.  Until this summer, when I’ve felt increasingly less able to see the healing process moving forward.  Stagnation would be the most positive spin but backsliding seems the most accurate description.  Or perhaps just setting aside the blinders of denial I’ve been wearing, trying to convince myself and those around me that I’m not really as ill as I am.

A friend of my daughter’s has been very ill this summer with what has finally been diagnosed as dysautonomia with POTS as its most outstanding symptom.  As she and her family have struggled with finding help and healing, I became increasingly conscious of how much her symptom picture, and even more, the corporate symptom picture of dysautonomia in general, resemble my own situation.  With that awareness, I also became less able to trick myself into thinking I was almost healthy.

Desperate for encouragement about my physical health, I pulled out the Adrenal Fatigue book I used to guide my healing journey.  I haven't done the function tests since mid 2008 when I got the book.  So I thought I could cheer myself up by retaking the tests and seeing how much better I am—NOT!  I still flunked the tests really badly, although not quite as spectacularly as the first time I took them in 2008.  I got really depressed after that and wrote my Middle Aged Rant.

So the question has become how do I live from here on out?  Do I accept the diagnosis and prognosis of a chronic disease that I will probably never fully recover from, accept my limitations, accommodate them, and turn my focus on living the rest of my life well?  Or do I keep focussing on trying to find healing, to be not physically limited, even if that means another year or more of my life spent in little more than pursuit of physical health?  Do I start looking again for outside help (doctors, therapists) again in a vain chasing after diagnosis and prescriptions? Or continue with my own self-care but with the attitude of maintenance rather than recovery?

I am convinced that fundamentalism in its various guises, with its insistence on pursuit of perfection and shaming attitudes for failing that perfection, is largely responsible for my having become ill in the first place.  Fundamentalist legalism, fear and shame, the cognitive dissonance that most fundamentalisms perpetrate were the driving forces that used up my adrenal function and left me prey for this half-life I feel as though I now have. The question I live is whether the fundamentalist disease has left me wounded (with the immediacy of healing) or scarred (all possible physical healing has occurred, accepting limitations and moving on is the focus)?

Of course, the correct response to any of Life’s apparent either/or questions is not to accept limiting polarity but to look for the resolution that accommodates both/and.  Therefore it is true that I have both wounds still in need of healing and scars that need accommodation.  It is true that I have both physical disabilities and that I have psychological conditions that exacerbate those disabilities.  A hysterical disease is neither “all in her head” nor not-at-all-in-her-head.

It is also a long-established pattern in psychoanalysis that when a client comes very close to uncovering deeply-held unconscious issues, the protective strategies that enabled those unconscious issues in the first place work very hard to maintain the status quo, often manifesting as a worsening of the client’s presenting condition.  Looking back this summer, I notice that my illness took its steepest turn for the worse immediately after a week in which I got very excited about a new direction in theological reading I had begun and I had an interview for a volunteer position where the director was strongly hinting that I consider a new career direction (the hinting was not significant psychologically, the fact that I encouraged the hint was significant).  By the time I got home from the interview, I was overset by symptoms that have not let up since.

Quite obviously, when I can look with eyes that see, …

… although I can say in my head what I see so clearly, I am not able yet to admit it in print.  As I got to this sentence, I was interrupted by several things that included a fight with both daughter and husband and a subsequent crying jag.  Some time later, now I just can’t get back to writing that concluding paragraph; I’ve been on several procrastinating tasks and I’m admitting defeat.  I’ll write what I’m beginning to acknowledge to myself as I can.  It will surely be less startling to others than I have found it myself.


  1. Love, love, and more love to you Sandra!

  2. Thank you. I'll take all I can get since I don't seem to have much for myself these days.

  3. Sandra, having been diagnosed five months ago with a chronic lifelong disease, I am grateful to your words, with which I can so relate. I am trying to accept that I am no longer in control over my own body (was I ever?), that no amount of organic food or healthy living is going to be enough to cure me (although I do believe - perhaps I have to believe - that I would feel worse if my nutrition was worse).

    I am trying to accept that I will have no warning when an "episode" is about to hit and knock me flat, and that no amount of willpower or stiff upper lip on my part can stave it off, no matter what is going on in my life at the time, or what my husband or children need from me.

    I am acutely mindful that many people have far worse challenges than I do (and they certainly do). I am a white middle-class American woman with a happy marriage and three healthy children. But this disease development has undercut so many of my constructs that I cannot help but wrestle with the "existential" questions.

    Anyway, thanks for sharing your post. You put words to thoughts I've had a hard time articulating.

  4. Savannah, I can so relate! Finding the right balance between accepting new ways of being (handicaps and limitations are such horrible words without at all the healthy connotation that we need) without also accepting a victim status, or worse, a blame-the-victim status. Finding the healthy place to live between fighting to overcome (or at best accommodate) the debilitation and living so as not to be defined by or limited to who you are as one who is debilitated.

    On the one hand, you get scoffing "you don't look sick", "snap out of it already", "I think you are using this condition to get something"; and on the other you get "never give up", "you can recover from anything", "accepting limitation is to limit yourself". Real health is, at least for me, probably somewhere in between--not "either/or" but "both/and"--but figuring out when to fight, when to accept, when to just attend something else.

    Sometimes, maybe most of the time, that something else is really more important to health and well-being. Those existential questions that most people (well, certainly most white middle class Americans) never have to look at: Who am I? Who am I when the obvious and usual definitions aren't working? What is my purpose here? Is there a Grand Plan or is it all a crapshoot--or something else entirely?

  5. I've been thinking about you and have been so swamped that I've not been able to check up on blogs or make my usual comment rounds that like to do. Thank you for being real, even despite the circumstances and questions. I loved your description of instead of climbing up onto the boulder to survey your landscape, you curled up into a weepy heap underneath its shadow. Question...have you found anything creative that might help? I've recently begun 'being an artist' again, and I previously underestimated how powerful it is to be able to express through different artistic mediums. It brings new levels of healing in ways I'd forgotten or didn't know to expect.

    Hugs to you... <3

  6. Creative works as healing... yes, I've been looking into this as part of my protocol. I have noticed that everything I used to do for creative expression and just plain fun has fallen to the wayside with my illness--much because I've just been to exhausted after what I felt i HAD to get done to do anything I WANTED to do. Writing this blog has been probably the first creative impulse that I've given priority to in years.

    I used to sing, semi-professionally and as a worship team vocalist at church, but haven't been able to sing since my mother died... in 1992. I used to paint and I used to cook, both as creative expressions, but both things got co-opted into Have To's in my fundamentalist version of things--our homeschooling curriculum was supposed to be "arts infused" (everything got painted or drawn or somehow artistically rendered) and my alternative health interests were predicated on eating the healthiest foods (requiring everything to be made from scratch, perferrably home-grown as well).

    When I got sick, everything that had become a HAVE TO triggered my symptoms so it has been hard to find anything fun to do. Even sitting around watching movies with the girls has lost its appeal after I developed a "movie curriculum" for my movie-mad daughter.

    Oddly enough, I learned to knit as part of our homeschooling (because it fosters integration of both sides of the brain, kinesthetically teaches higher math skills, etc) and have found it to be extremely meditative. You'd think that because of why I learned to knit, it would be as big a problem as everything else fun, or that I would have turned it into a goal-oriented task as I do most things. But I am content to knit very slowly and plainly--mostly washcloths, actually. Unfortunately, I cannot knit in the hot weather; I find it too oppressive and contracting. Since it is 90+F from Easter to Thanksgiving, that doesn't give me much of the year to take advantage of knitting.

    This year, I was able to knit until almost June before I had to quit. And I've been wondering if there was a significance to when I started really feeling my symptoms again and putting aside the needles and yarn. Over the winter as people would ask what I was working on, I would reply, "I'm knitting my mind and my soul back together"

    I will continue to look at this issue--I certainly need more creative expression (besides blogging, which is really more of a psychological therapy) and I will look for more opportunities to add WANT TO rather than HAVE TO projects to play with.