Nature & Spirituality, Sickness & Health

I Shall Not Live in Vain

  Some days, being part of the solution does not come easily.  I am tired.  I am scared.  I am in pain  Or, I’m just grumpy.  It’s on these days that I contract my expectations down to a single goal: to not be a part of the problem.  On those days, I am not going to be doing any mind-blowing activism.  Heck, I may not even be smiling at people.  In fact, I probably will be in my bed, under the blankets, hiding—even from my cat.  So yeah, no making the world a better place—and that’s okay, so long as I realize, that if I’m not careful, I might be making it a worse one.  How?  By telling myself—for whatever insidious reason—that I am a loser, a failure, a waste of space.  By becoming a black hole of negativity that is just yearning to suck the light out of the rest of the existence.

  On those days, I do my best to be kind to myself—if not for my own good, then for everyone else’s.  I think it’s hard to argue with the notion that we are all connected.  We may not understand the nuanced workings of those connections—if they are physical or psychic, or both, but whether we like it or not, we affect each other and all the other life on this planet as well.  According to Chaos Theory, a butterfly flapping its wings in one part of the earth can cause a hurricane in another part.  So, if I, if any of us, abuse ourselves with nasty thoughts, even for one day, how much damage does it cause?  And not just to those around us, but to the world at large?  There are a great many sources of malice in this world and I don’t want to work against the good people who are making inroads against these ills.  I hate the idea of adding—no matter how faintly—to the darkness.

In one of my favorite poems, Emily Dickinson writes:

If I can stop one heart from breaking,

I shall not live in vain,

If I can ease one life the aching,

Or cool one pain,

Or help one fainting robin

Unto his nest again,

I shall not live in vain.

 Which is great.  A worthy way to live.  But if I can’t do any of these things, then let me start my charity not just at home, but in my own heart.  If I can’t be part of the solution, please, at least, let me not be part of the problem.

Thanks for reading. 🙂

Nature & Spirituality, Sickness & Health

Real Work

Being Here

“This is the real work.”—my words to my mother as we sat the dining room table a few nights ago.  I felt like I was about to spin out.  I’ve been more tired this week and my tasks have become overwhelming.  I was getting scared—and when I get scared, my body freezes in place, and my mind tries to run away.  But this time, I didn’t want to do either if those things.  I’ve been down those roads.  I know where they lead.

Some years ago I had a dream in which I was walking in the woods near the house where I grew up.  Traveling uphill on an autumn day, I enjoyed the colorful leaves decorating the trees.  After a while a car drove slowly past, and it occurred to me to become nervous.  Some yards ahead of me, the car stopped, and a man got out and hid behind a tree as if waiting for me.  My inner alarm blaring, I turned on my heels intending to flee down the hill.  But as I did, I saw a second man step out from behind the first, pointing a gun at him.  Already in flight and frightened by what might be done to me, I didn’t stop to examine the scene any further.  I fled down the hill and formulated a plan of where I might go to hide.  Suddenly, I found myself swamped in cold water and snow.  It came up to my waste or higher as I struggled to make my way through and escape the torture that seemed to pursue me.

When I related the dream to my mother at the time, she replied, “Well, you won’t like what I have to say about it.”  “What’s that?” I asked, steeling myself for her answer.  “What came to me is that you were supposed to witness, and instead, you ran away.”  It’s taken me 10 years to figure out how she was right.  Of course in a physical showdown, the most preservative thing to do is fight or flee, but this was my subconscious—no physical danger, just the warring of inner demons and gremlins.  When you run from those guys, there is no escape.  And going hand-to-hand with them is less effective than one might think.

Psychiatrist and mindfulness expert Daniel Siegel tells a story in his lectures about what happens when a person is bitten by a dog.  Say the dog has its teeth clasped around your hand, your innate response is to pull away from the pain and danger.  And the dog’s response is to strengthen its hold on you, clenching its teeth and digging them deeper into your flesh, thereby causing more pain, more danger.  But, if you were to relax, and allow your hand to move further into the dog’s mouth—in effect giving your hand to the animal, its gag reflex will kick in and expel your hand from its mouth.

I don’t know if this is true in practice, but the idea, on an emotional level, is sound.  That is why, as I stated here last week, I want to embrace my illness—as well as whatever part of me is healthy—and let it all just be as it is.  Not that I don’t try to feel good, but that I don’t consume the moments of my life with conspiring or running away.  I want to come home to my body, come what may, and know that I am safe here—even if it is painful and scary.

One of the many health practitioners I’ve consulted over the years once told me, “Be in your body.  You want your body to be there for you, so you need to be there for it.”  It has taken me at least 10 years to understand what that meant (Apparently my learning curve is a nice and gentle decade-long slope!).  Now, even when I don’t feel all that good about myself, I remember that the organism that is my body is still beautiful and amazing—like a tree or a flower or so many of the other living things that I respect and cherish just because they are alive.  I have spent so long running away from pain, but now I am leaning into it, paying attention, allowing whenever I can, for as long as I can.

And this is the real work I was talking about a few nights ago—being there at the dining room table and saying to myself, “I feel like I’m about to spin out,” and letting that be, without judgment and without trying to change it.  These moments of sitting with difficult emotions or thoughts and not acting on them is some of the hardest work I’ve ever done.  It feels so much easier to start howling, or throwing dishes, or binging on donuts or TV.  But I know that if I do any of those things, the second I’m done, those thoughts and feelings will still be there—all the moldier and nastier for my having tried to ignore them.  But if I stay with them, or as the Buddhists would have it, offer them a cup of tea, it gets better—maybe not right away and maybe not exactly in the way I think I want it to—but it does get better.

Sickness & Health

Definitely Not Just a River in Egypt

Denial 02

A few months ago, I went to a new dentist.  During the intake, the hygienist asked me if I had any health problems.  I thought about this for a split second longer than probably seemed necessary before answering, as casually as possible, “No.”

No.  A simple, one word answer that couldn’t have been more ridiculous if my nose had grown ten inches while I was uttering it.  After more than 20 years, you’d think I would have gotten the hang of this by now, but the truth is I don’t know how to tell people the truth about my health.  I have pain and tiredness that interfere with every aspect of my life and yet, because I often feel the person I am speaking to will not understand, will not believe me, will blow off the statement, “I have Chronic Fatigue Syndrome,” as something unimportant, if not deceitful or indicative of a weak will and/or laziness, I avoid talking about it.  Until recently, I have felt that many people in my life look at me and think, as Cher so eloquently put it in the movie Moonstruck, “Snap out of it!”  And the bigger problem is that, a lot of times, I have felt the same way.

It’s amazing to realize, after all these years, I am still in a denial.  To quote a wonderful sketch written by Garrison Keillor, “This is not happening.  I am not here and this is not happening to me.”  Crazy.  Unbelievable.  But because my super-duper logic-loaded brain can’t come to terms with an effect that has no apparent cause, I have spent most of my moments—even those substantially painful ones—believing that this is all a mistake.

Said mistake is two-pronged.  One: because no one has ever been able to find a whole heck of a lot wrong with me diagnostically, I tend to believe more in the tests than in my own experience.  And two: yeah, I really don’t want this to be my life and, maybe, if I don’t accept it, it will go away.

But I couldn’t help realizing the ludicrousness of my behavior at the dentist.  I desire authenticity from others and myself.  I hate lies and fakeness above just about everything else.  And here I was lying and being fake.

I did it because it is so scary to be honest and vulnerable, to allow others to have their own thoughts and feelings about me that I can’t control (as if I could do that anyway!)  I think most of us have the illusion that if we act a certain way, achieve certain things, we can get people to view us in a positive light.  We can get the smiles and kudos we all crave.  While this is true to some degree, we can’t actually control how others feel about us and we risk a lot by attempting to win approval through less than authentic means.  For one thing, the chance to connect with others on a deeper, more enriching level.  What if the hygienist had all the compassion in the world for me?  What if she did understand?  What if someone important to her has CFS and my revealing that I was sick somehow helped her cope with that?  Recently, someone close to me brought me to tears by telling me that she had never thought I had been lazy or malingering, that she felt sadness at my struggles and defensiveness toward those who thought the worst.  I shudder to think how much I have let my fear of her disapproval come between us.

Yes, there have been and will continue to be people who don’t get it and are hurtful as a result, but the bigger problem with denying my situation is this: what does it do to my relationship with myself?  What else in me—how much of the good—have I denied in the process of pushing this “other” away?

So lately, I’ve been working on embracing CFS.  What does that look like?  Not being ashamed.  Not hiding.  Not lying to people just to save my ego some cringes.  It means, instead of thinking things should be different and figuring out whose fault this all is (usually mine), believing in my experience from moment to moment, staying present with it, and no longer defending myself from reality.

Writing, Writing & Reading

The Art of Starting Over . . . Again.

New Years

I am a sucker for new beginnings.  In the spirit of the advertising industry’s seductive promise “new year new you”, I revel in the idea of starting over—everything shiny, filled with possibility and the hope that this time, things will be different.  This time I won’t mess up.  This time—unlike all the other times—I will get it right.  Yes, the new year can be a very dangerous time for me.

In mid-December stumbled across Angela Ackerman’s business plan for writers. It was just what I had been looking for—a way of organizing my goals for the new year, of helping me to focus on what I really want—out of writing and out of life.  I worked on it diligently, spelling out my many goals for 2015, among them: blogging more, writing my new novel more, submitting more—not to mention my non-writing goals—exercising, meditating, cleaning, harp playing, art journaling . . .

I know myself, so I tried to keep the goals teeny-tiny and quantitative: 50 blog posts a year, 4 agent queries a month, 1750 novel words a week.  This way I have something real to shoot for and, if I do achieve them, I can’t say to myself, “Well, you really should have done more.”  The goal is the goal.  Full stop.  Still, even though it was list of small goals, it was a long list, and a lot of small goals can add up to well, too much.  So as the new year approached, I became scared.  What if I couldn’t do this?  Again.

I can’t tell you how many times I’ve devised regimented, detailed plans in the efforts to get healthier or thinner or more successful.  And just as that clever Scot warned us, my best laid schemes have oft gone a-gley.  A few years ago I came up with a writing plan so demanding that not only was I unable to maintain it, I began to question my desire to write at all anymore!  I don’t remember the writing/life schedule I concocted for myself last year, but that didn’t work either.

The problem is that hope gets me just as much as the fear does.  I want things to be different so badly, that I expect myself to be different, as if deciding could make it so.  When I was in high school and first sick with Chronic Fatigue Syndrome, I kept rejoining the cross country team each fall in the unreasonable belief that I could run hard enough to leave my illness in the dust.  And, though, blessedly, I’ve been feeling somewhat better over the past month or so, I still have the same body and, with it, some very real limitations.  I can’t pretend that I can all of a sudden expend 50 percent more energy than I have before.

So, what to do?  The first thing was to write at the top of my list of goals: “Adjust as needed.”  It feels like a little bit of a cop-out, but let’s face it, other things will creep up—important things, fun things, things that cannot be ignored.  While I’m busy making other plans, Life is going to interfere.  That’s its job.  The second thing is to be kind to myself, take heart and pride in any forward progression.  Small actions over time add up.  Thirdly, I have to remember that these goals are not arbitrary.  I have set them because they relate to things that are important to me—things that speak to the best parts of me and, quite possibly, that cause me to have a more positive impact in the world.

So as I work on the first leg of my blogging goal (only 49 more to go!), I still carry both the fear and the hope.  The fear that it will all fall apart, but also the hope that I can carry these goals gently, nurturing them.  It feels good to have a focus.  It feels good to know that I am committing to my pursuits and myself—even if I may have to rejuvenate that focus and commitment over and over.  I know a lot of people stop making resolutions because they can never seem to keep them, but I think the most helpful resolution—for me anyway—is not to be constant and unerring, but always, in some way, to return.

That’s the other thing I wrote atop my list of goals: “It’s okay to fail.  Just keep coming back.  Keep starting over.”

What about you? What are your goals for 2015?  Do any of them include being kinder or more understanding to yourself?

Sickness & Health

A Chat with Retrovirus Rosy

Is it weird that I think a picture of a retrovirus is beautiful?  Especially when it’s one that might just possibly be the cause of my 16-year illness?  I’ve just read a report at npr.org that says that XMRV is present in two-thirds of CFS sufferers, compared to only 4 percent of the general population.  Now, as my psychology professors were very insistent on drumming into my head in college: Correlation does not prove causality!  And, even if XMRV does cause CFS, it will take some time before the appropriate treatment is available to the general public.

But I have to say that simply the notion that people are working on this, that they haven’t given up on folks like me, is almost too hopeful for words.  I’ve never imagined this moment would come—when scientists would be this close to identifying a causal agent for my illness.  It has seemed altogether too farfetched.  And I’m not sure why.  Perhaps it is that I still am haunted consciously or unconsciously by the notion that my sickness is not real, that really, I am just a slacker.

Or maybe it’s just that I gave up on allopathic medicine a long time ago.  Or perhaps, more accurately, 16 years ago, it seemed to give up on me.  Over the intervening years, I have gotten used to conventional medicine being unhelpful to me.  There is no bitterness in that statement.  In fact, I have often felt that there must be something wrong with my chemistry or my way of being that has caused me to be incurable in so many different ways.  My expectations of doctors have become so measly that when, in the past few years, a medication has proven effective (for non-CFS ailments), I have been genuinely surprised.

And now I look at this magnificent picture of a remarkable organism that may even now be coding and recoding itself into my DNA—making itself one with me.  I should feel violated, but strangely, I don’t.  It looks like roses to me and again, I can’t help it, it is beautiful to me.  Not that beautiful things can’t be deadly or, at the very least, extremely annoying.  Beautiful does not equal good.  Truth maybe, but not good.

I have long thought of my body as a fluid community of cells, rather than a solid, individual being.  Consequently, I have tried to coax my cells to health—with words, with imagined light beamed into uncooperative places, with a sense of love that I hoped would penetrate to the heart of even the most stubborn malady.  I have reasoned with them: “Hey guys we’re all in this together.”  Apologized to them:  “I am so sorry about putting us all through that experience, but please don’t punish me for it now.”  And I know that with this idea of a retrovirus fresh in my mind, I am bound to start talking to it as well—whether or not it is actually there.  “Hello, Rosy the Retrovirus, would you mind taking up a little less room?  It’s getting a little crowded in here.”  Perhaps I should be more forceful: “Get the hell out, and take your new DNA code with you!”

Aye, there’s the rub.  Once a retrovirus has gotten its little claws in you, there isn’t any going back.  I remember the sadistic little grin my Neuropsych prof donned as she explained to us that curing HIV (also a retrovirus) was impossible because it infiltrates one’s genome so completely that the host cells don’t even realize that they are replicating anything but their own original code.

As I understand it, current HIV treatments work by inhibiting the retrovirus’ progression.  But, as my professor pointed out, this is only a stopgap measure.  The virus is still present and, in fact, becomes a part of the host’s self on a very basic level.  So if I do have XMRV, it is, right now, a genuine part of me.  Of course, there are a lot of individuals inside of me right now that I would classify as not me—a plethora of helper and hurter microorganisms simply doing what I myself am: trying to live as well as possible.  I don’t think this is what religious people mean when they say, “You are never alone,” but it’s so true.  Forget about God, I carry a whole population of me-s and not me-s around with me wherever I go. (Come to think of it, where is the “I” in all of this?—Best leave that one for another day.)

Can we live in peace?  I don’t know.  I’m guessing not, though—since the prosperity of many of these organisms means illness or even death for me.  Whether or not I am aware of it, I am probably, as I write this, making war inside my body.

And this is all natural—which, if you believe those labels on cereal boxes, means it must be good.  You know, like hemlock and black holes.  And like that picture of XMRV—natural, beautiful—and, if those scientists are right, one major pain in the ass.

To read more about XMRV and see its picture go here: http://www.npr.org/templates/story/story.php?storyId=113613955

Sickness & Health

Invisible Awareness

I am posting early this week because today marks the start of Invisible Illness Awareness Week during which bloggers from all over are devoting their posts to alerting the public to the various invisible illnesses that affect so many people.

I suppose this is a bit out of bounds given the stated topic of this posting, and especially given the fact that I have one of the mothers of all invisible illnesses, Chronic Fatigue Syndrome, but I tend to find awareness days and weeks and months rather tedious.  It’s hard to summon up a whole lot of concern for the plight of others who aren’t directly related to you in some way.

Then again, given the high incidence of invisible illness, you probably are affected by them.  Just off the top of my head, I can think of three other people in my life who have or have had such diseases.  My godmother has lupus.  My sister, cancer.  My cousin Sarah was born with internal physical defects that caused her death before she reached adolescence.

This was some twenty years ago now, but I still remember going on outings with her.  Sarah was a few years my senior, so I looked up to her emotionally, but her energy was so compromised that she sometimes had to sit in a stroller, causing many stares and even ungracious comments from passers-by.  I remember, even at a very young age, feeling indignant at their appraisal of my brave cousin.  Why didn’t they even try to understand?  How brittle were their imaginations that they couldn’t stretch them enough to envisage a good, logical reason why an older child might need the assistance of a set of wheels?  And the worst part is, my cousin was not oblivious to their estimations.  So, not only did she have to deal with the physical difficulties her body presented her, she had to combat the unkind thoughts and words of others.  When I think of it now, I still get mad.  I get mad because, unlike her physical maladies, that extra pain she felt was completely avoidable.  I get mad because those people did not intend to be mean or hurtful.  They would have been mortified if they’d known the truth.  I get mad because they looked at the scene and did not challenge themselves to find anything but the simplest, readiest explanation for what they saw.  And I just think, really, we are better than that.

In reality, “invisible illnesses” are not truly invisible.  You just have to look closer to see them.  Like a few days ago, when I was shopping with my mother and sister for vitamins.  The saleswoman had been nice enough, but I had gotten a strange vibe off her which translated for me (as it often does) to “for some reason she doesn’t like me (us).”  I mentioned as much to my mother later, and she told me, “Oh, no.  She was having terrible neck pain.”  My amazing and observant mother had noticed the way the women kept rubbing her neck, had glimpsed the stick-on heating pack residing there, and had asked her gently, “You must be in a lot of pain, huh?”  And the woman had melted with grateful acceptance of my mother’s acknowledgement.  The thought of this interchange softens me as much as the remembrances of my cousin’s experiences cause me to harden.  It cost my mother nothing to extend a half-second of understanding to this woman who, in spite of her woes, was doing her job to the best of her ability.  My mother didn’t have to do anything backbreaking to make a positive difference in the saleswoman’s day—not take away her burdens, not solve her problems—just recognize that the woman was having a rough time.

There have been people who have done this for me in my life.  I would like to say there have been a lot, but that would be untrue.  And I get it.  I do.  We all have problems staring us in the face, and it’s difficult to look beyond them into someone else’s sorrows.  To compound matters, when people are open to it, I often have difficulty explaining CFS to others.  It’s so big and complex that I often find myself somewhat muddled when I talk about it (the brain fuzz it causes doesn’t help either).  The only way I can think of to give you an idea of what it’s like, is to give you a little assignment that might help to replicate the difficulties I have experienced:

Okay, today, I want you to go for a five mile run (10, if you’re in good shape), do about twelve 200m repeats, and 50 or so push-ups.  Then, I want you to eat approximately 12 donuts, have 3 or more beers, and listen to blaring loud Techno for four hours in a room full screaming bright light and a smell that is completely noxious to you (gasoline always works for me—or too much cologne, too much cologne is truly lethal).  Then, I want you to pull an all-nighter.  Doesn’t matter what you do—as long as it’s not relaxing and it’s not sleep.  Then, tomorrow morning, attempt your regular daily grind.

Granted, I haven’t tried this protocol, and it’s probably not foolproof, but it should approximate the exhaustion, muscle pain, weakness, nausea, dizziness, sore throat, sore sinuses, and difficulty concentrating that many CFS sufferers cope with just about every day.  You may or may not get the hyper-sensitivity, constipation, diarrhea, bloating, and abdominal pain.  And you probably won’t experience the low-grade fever, restless sleep, insomnia, metallic taste, chest pain, back pain, depression, or hair loss, but really, we wouldn’t want to overdo it.

Actually, please don’t even consider doing the above.  I haven’t the slightest desire for you to feel the way that I have felt so often over the past 16 years.  I just want you to know that CFS is out there.  It’s real, and it affects people in soul-crushing ways.

Come to think of it, it’s a bit odd that we aren’t more aware of invisible illnesses because everyone has had a bad day.  Everyone has had times when some kind of pain—physical, emotional, or spiritual has torn at their guts and they still had to go through the motions of daily life.  Still had to take care of their kids.  Go to work.  Give a presentation.  Present a cohesive picture of wellness to the world at large.  And all the while, their insides are being shredded by whatever ails them.  The truth is, you can understand my pain without actually feeling all of it.  You’ve had a terrible headache.  You’ve had stomach flu.  You were in the depths of despair when your cat died and your girlfriend stomped all over your heart.  You get it.  Really you do.  You just need to remember that you get it.

I think the real reason that awareness weeks irritate me is that I believe that it shouldn’t be so hard to realize that our fellow humans—all of our fellow humans—have difficulties.  It really shouldn’t be so tough to understand that even though someone else’s life looks peachy keen, there’s probably something they’re struggling with.

As helpful as they can be in highlighting various problems, sometimes I think we should just scrap all of these individual awareness days and weeks, and just have Human Awareness Century, during which we all become truly aware of the plights of our neighbors, our friends, and the guy sitting a booth away from us at the diner.  Or, if not truly aware, at least vaguely compassionate—for no other reason than that person is human and, for all you know, may be having the day (or lifetime) from hell.

So, I ask you, during this Invisible Illness Awareness Week not to give money, not to hold a bake sale, not even to tell all your friends about invisible illnesses, but simply to extend a single ray of lovingkindness to everyone with whom you come into contact.  You don’t have to like them or their actions.  You don’t have to smile at them or be overly nice.  Just think a single word in their direction and move on.  Just think: compassion.

For more on Invisible Illness Awareness Week go here: http://invisibleillnessweek.com/

For the master of lovingkindness go here: http://www.jackkornfield.org/

http://invisibleillnessweek.com/

 
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.