Sickness & Health

The Shameful Truth(s)

    So, since the goal is audacity, I think today I will summon up the gumption to write about my biggest source of discomfort—the thing that, for more than 15 years, I have been reluctant to discuss.

    I bet you guys are thinking I’m going to start in on something really juicy here—sorry, it’s just the fact that I have Chronic Fatigue Syndrome.  Only, there’s no “it’s just” about it for me.  I don’t really know how the people around me feel about it—if they are silently accepting me as I am, or if they find my continuing plight tiresome, or if they simply don’t believe in it.  For me, it has been, not unnaturally, a burden, but also a shame.  I have feared the rejection of others if I were to talk about it.  And I didn’t want to talk about it anyway, because the whole thing was stupid and boring and distasteful to me.  And, also, just difficult to speak about—I do not mean emotionally, but practically—it feels as though we don’t actually have words in our language that can say what wants to be said about this.  Our lexicons don’t have room—and I’m sure it’s not just CFS.  It’s other things too—subjects that are literally unspeakable.

    But I have tried to write what I could not say.  For the past five years, I have been working on a memoir about my experiences with CFS.  It’s been a labor of faith because, from the beginning, I had no desire, whatsoever, to share my frustrations and general humanness with the rest of the world.  And it has felt like hubris to imagine that others would find my (very) personal recountals in the least way edifying.  (Much as I am hoping you do now!)  I guess a part of me is still trying to play it cool, although, now that I come to write that, I remember that I’ve never actually been anywhere close to cool, so I’m not exactly sure what I’m worried about. 

    Anyway, Something told me to write the blessed thing, and now that Something is telling me that I have to really get serious about getting it published.  Or at least I hope that’s what’s happening.  It would be nice to believe that I am following some potent Divine guidance, rather than just meandering around in my own garden of absurdity and delusion. 

    A few years ago, when a friend of mine suggested to me that I should contact Oprah and Dr. Phil—try to get on their shows to promote my book, help me get a publisher, I cringed because I pictured myself becoming the poster girl for CFS—horrid thought indeed.  Here, is possibly the biggest of my shameful truths: I had no desire to be associated with people like me. 

    It’s as though I have been living two parallel lives at the same time—one in which I was ill and a pathetic excuse for a human being and one in which I was healthy, beautiful, and strong.  And in both of these lives I was an actor playing the part—but not quite adeptly enough to pass muster.  I could tell that people saw the cracks in each persona.  When I was acting the role of the sick person, they could just see the healthy one lurking below my ill-applied make-up.  And when I undertook the character of the robust, vivacious woman, I felt my physical/emotional/mental disorder bleeding through.  I haven’t been able to trust myself, because it’s not supposed to be this way.  It’s supposed to be one or the other.  The people I live with, the people I encounter, should be able to depend on the steadiness of my being.  I should be able to rely on the steadiness of my being.  But I could never quite commit completely to either role, because, as we all recall from high school math, parallel lines simply do not meet. 

    But I’m a reasonably intelligent woman.  After 15+ years existence in this attitude—over half my life—I must realize that some kind of new figuring is required here.  I can’t keep meandering around my garden of absurdity and delusion feeling ashamed of myself all the time.  And I must realize that I do not know what others think about my having CFS because I have been afraid to ask, because I have rebuffed them when they have broached the topic—eager to get on to something, anything, else.  I wouldn’t have trusted those around me anymore than I have trusted myself if they told me that the circumstances of my life do not bear on their love for and approval of me.  I would not have trusted that they were not being disingenuous or simply polite if they said that they were proud of me; that such words wouldn’t be just a pat on the head of a reasonably well-behaved dog—like I had done good enough . . . for a sick girl.

   I have felt that my value has somehow become intertwined with my illness, and I am coming to a point where I am not sure that that is wrong.  My illness has value because I have value as a unique expression of the Divine.  My illness has value because the Divine has laid it at my feet, has given it to me as a mantle—to wear for as long as needs be.  The why of it is probably not a whole lot my business.  My business is the integration of those parallel Dianas, to know that I can be, that I am, both personas in one life.

    And I am certain that CFS suffers don’t have the monopoly on trust issues—with themselves or others. 

    So, in the name of audacity, I am entrusting you with the knowledge of my illness: I was diagnosed with CFS when I was 15.  I have never held a full-time job.  I live with my mother.  I don’t know what to say to people when they ask me “what I do”.

    I am entrusting, to you and to myself, the awareness of my determination to eat, drink, and breathe compassion, my desire to live a joyful and constructive life, sick or well.

    And in the name of audacity, I challenge you to trust someone (including yourself) with whatever hidden truth you have heretofore labeled shameful.

6 thoughts on “The Shameful Truth(s)”

  1. so glad you are able to talk in such a fashion. must be liberating.
    that trust stuff is certainly a tough one. it can be awfully hard to come to an understanding, acceptence of the things we don’t like about ourselfs. i know i’ve spent alot of time beating myself up over my failings, to many to list here. our friends and loved ones are supposed to look past those and concentrate on the good parallel line.

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  2. Yep, it takes a lot of courage (and audacity!) to tell a hard secret, a heavy truth, but it’s so freeing! And empowering. And it opens such common-humanity channels with others. You and your readers might want to take a look at this: http://postsecret.blogspot.com/.

    And I’m so impressed with your courage and your candor.

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  3. As a fellow-CFS “sufferer”, I’ve used the phrase “pathetic human being” to describe myself, so I know how you feel. Bravo for your declaration that your life has value as the life the Divine has chosen for you. I see this, too, and recognize that my job is to live out that chosen life with as much courage, creativity, and faith as I can muster. In that I can see myself a success even though it will be hidden even from those closest to me because CFS is an existence whose experience others cannot even imagine. Thank you for putting your insights into words. At 68, after 40 years of CFS, I keep thinking I want to do the same for my children, grandchildren, etc, but life always seems to demand I do something else – or on bad days do nothing.

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    1. Forty years. Wow. I’m into my third decade and somehow I keep thinking it will get easier! There are so many things that I think about and want to do. Alas, life had other plans. I sort of like the idea I once read in a horoscope that everything I wanted to get done was happening in some alternate dimension or other. Best wishes to you, Jan!

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      1. Thanks for the good wishes. As age shrinks my life even more, I focus on filling my “little life” with the things I love. I see you doing the same.

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