Mindfulness, Nature & Spirituality, Sickness & Health, Writing & Reading

How and Why I Give Myself a Little Credit

bear-witness-to-your-own-goodness-learni-to-give-myself-credit-dianaklein-com

Where am I losing energy? I ask myself this question a lot.  I want to know what is draining me, what is pulling me down.  I want to minimize those influences.  Sometimes these things are, partially or completely, beyond my control—doctor’s appointments, conflicts with loved ones, stores with disturbing fumes.  In these cases, I can take deep breaths.  I can take it slowly.  I can limit my exposure to necessary, but distressing situations.  But, in the end, I really just have to shrug my shoulders and go through them (Squelch! Squerch!  See last week’s post about this.)

I’ve been realizing recently though, that there is at least one way in which I am losing energy that is completely within my control. It’s the way that I talk to myself.  I know, this is not news.  Some 2500 years ago, the Buddha was warning folks that “what we think, we become”.  But I’m speaking very specifically here about my attitude toward how I am approaching any given task.  I have noticed that very often I am telling myself that I am not doing a good enough job.  The song goes a little something like this: It’s taking me too long to shop. I am paying too much for this box of granola bars.  Why can’t I write faster?  Why can’t I always make the perfect egg?  I’m not learning fast enough.  I should be making better progress.  I can’t believe I spent so much time playing games on my iPad today.  I should have been nicer to that stranger.  I should be getting more done.  I should have gone to bed earlier . . .

You get the idea. If I let it, my dissatisfaction with myself becomes a constant drone behind all my other thoughts.  It’s not fun.  And it’s been kicking my ass.  It’s been me, kicking my own ass, draining my energy, allowing my power to squirt out every which way.  Not cool.

So what’s the antidote? Well, of course, there is the wonderful practice of mindfulness in which I catch myself having these destructive thoughts and counteract them by expressing self-compassion—maybe with a hand on my heart and an internal assurance of, “It’s okay, Sweetie.”  If there are any casual observers of my behavior out there in my town, they can vouch for the fact that I have my hand on my heart, a lot.  It works. But, what if I forget?  What if my mindfulness is not working very well, and I get to the end of the day, and find that not only have I been disapproving of myself all day, but I didn’t even notice I was doing it?  Well, that’s when I get out my gold stars.  You think I’m joking.  I’m not.  gold-stars-learning-to-give-myself-credit-dianaklein-comI now have several exciting sheets of congratulatory stickers (like the ones used by kindergarten teachers) and, as I record the events of the day in my journal, I think of at least one thing I accomplished, write it down, and I plop one of those stickers down next to it.  Sometimes it’s for doing something I was scared to do—like expressing myself honestly even though I feared retribution.  But the bar is not always that high.  Sometimes I give myself a gold star for vacuuming.  Sometimes it’s for self-care, like say, napping.  You’re laughing right now.  I get it, but the truth is that if you’re like me, you do a whole bunch of things during any given day for which you give yourself no credit, whatsoever.  Why?  Because “You’re supposed to have done that.  You don’t get a gold star for brushing your teeth, or feeding your family, or hugging your kids when you’re an adult.  That’s ridiculous.” finished-productivity-stuff-learning-to-give-myself-credit-dianaklein-com I agree, one hundred percent—but ONLY, if you are asking for that gold star from someone else.  I can’t expect other people to get excited about my taking good care of myself.  I can’t expect them to reward me.  But when I acknowledge to myself the things that I am doing—even the stuff that I “should” be doing as a matter of course—I shift my self-attitude from a person who’s failing all the time, to someone who could maybe do some things better, but who is also doing a heck of a lot of things absolutely right.  And that chick, definitely has more energy than Perpetually Failing Woman.  Plus, she’s a lot more fun to be around.

P.S. If you like the opening image, you may want to follow me on Instagram or Facebook. I post new art images daily.

Sickness & Health, Writing, Writing & Reading

The Values of Silence

My fingers hover over the keyboard. I have so many thoughts, so many reactions.  Sometimes I even type them out, giving fleeting voice to my opinions, but always—almost always—I think better of it.  I hit delete.  I watch as a blinking cursor erases my feelings one letter at a time.

I don’t think I need to say that it’s been quite the week. We all have feelings and many of us are expressing them—some in beautiful ways, some in hateful, many somewhere in the middle.  Mostly, I have resisted expressing my political opinions anywhere on the internet.  And after all that has happened, all that may happen, I wonder to myself why and if such a decision been wise.

The why is fairly easy: I don’t want to fight. I don’t want to get into it with anyone—start a battle that no one will win.  I don’t want to hurt anyone’s feelings.  I don’t want my words to be mis-taken.  There are people in my life whom I not only dearly love, but also deeply respect who vote very differently from the way I do.  I live in a predominantly red community.  Why risk a potential rift?  I hate rifts.  I abhor violence.  It feels, at this moment in time, that we seem unable to speak to each other civilly—that a disagreement about ideology immediately devolves into name-calling.  Demeaning the value of each other as humans whether they be called “deplorable” or “nasty” seems to be commonplace.  I don’t want to participate in this.

When I was writing my memoir about my diagnosis and experience of having CFS a decade ago, I agonized over how to portray certain people in my life—people who have hurt me excruciatingly.. I wasn’t sure that being candid was the right thing to do.  Who might I hurt by speaking my truth?  Was it worth it?  I also didn’t want to use “being authentic” as an excuse for calling people out in a childish way.  Even when I wrote my first novel, I worried how members of my family would interpret certain aspects of it.  Would they be upset?  Would they be mad at me?  I can’t stand it when people are mad me.  It feels like attempting to get a foothold on crumbling land beneath me.  It feels devastating and lonely.  So I have censored myself—a lot (it’s actually part of the reason I have not submitted my work as much as I should).  Some of it has been wise.  I have been grateful when I have held my tongue in situations in which I would have liked to spit fire, but I wonder where exactly the line is.  At what point does silence stop being golden and start becoming a prison warden?

Well, I guess, that point is now. People say that some of us are taking this too personally.  But it is has become personal.  My opinion about what constitutes good government policy differs greatly from that of President-Elect Trump.  That would have been enough for me to not vote for him, but it wouldn’t have made it personal.  What made it personal, was the fact that I, and many women whom I care about, have been victimized by men, and the words and actions of Mr. Trump have ripped open those wounds.  The fact that so many people voted for him feels like an endorsement of a man’s right to hurt and debase women at will.  I know this is not true.  I know that if you are reading this and you voted for Trump, you were not thinking about me or any of my friends who have been through similar things.  You were thinking about Right to Life or the next supreme court justice or repealing Dodd-Frank or any number of practical reasons—maybe even personal reasons—why you felt that Trump was the best choice for this country.  People are suffering and they saw this man as a way out.  I get that.  I can respect that.  But I also weep for it.  And I don’t know how I am supposed to forget all the varied hateful things that Mr. Trump has said and give him my support now.

I have been silent. I have been fearful.  Today, I am saying a little.  How much will I say in the future?  I don’t know.   A part of me wants to speak for myself and for others who cannot, but I still don’t want to start a fight.  I don’t want to cause irreparable damage.  Honestly, I don’t want to put myself in the line of fire.  A part of me just wants to meditate and pray and spread love with smiles and music—and I will do that.  But is continuing silence wise?  Is it responsible?  Can anything be solved without respectful discourse?  I don’t know, but I heard a stat this morning that chilled me to the bones.  Approximately 49% of eligible voters did not vote in this year’s election.  Almost half of the people who have the ability to help decide how we will treat our children, our fellow citizens, our country were completely silent.

img_2466

 

CFS, Reading, Sickness & Health, Writing & Reading

Coming Home to My Body

curiously-smiling-attentively-coming-home-to-my-body-dianaklein-comMy mother and I are walking together this morning. It’s already apparent that it’s a tough one for both of us, but we still do our daily check-ins.  “My legs are hurting a lot,” she tells me.  She knows that the pain in my legs have been a merciless for several days now, so she adds, “Maybe your legs said something to mine, and it spread.”

She’s making a joke. I know this.  But this morning, I am not in the mood.

Despite the pre-dawn darkness she senses my chagrin. “Not you,” she assures me, “your legs!”

“My legs are me,” I explain.

This is a fairly new admission for me. I have spent many, many years dissociating from my body, talking about it in the third person, distaining its weakness.

There’s an interview with Toni Morrison from about a year and a half ago during which, because of chronic pain, she talks about her body in a similar way. “I did so much for you, body, why aren’t you helping me now, when I need you?  I was so nice to you.”  When asked if making peace with her body was hard, she confirms “I do feel like I’m under attack.”

It’s easy to feel this way: My body is failing me. My body hates me.  I hate my body.  I felt this way for a long time.  Oh, I paid lip service in yoga classes to “listening to my body”, but my subconscious was really thinking: Listen to my body? Are you kidding me?  That bitch doesn’t know shit!

Then, in my mid-twenties, a hypnotherapist told me to “Be in your body. You want your body to be there for you, so you need to be there for it.”  I was a little confused.  What does she mean, be in my body? I am in my body, aren’t I?  But then I started thinking about The Robber Bride, a novel by Margaret Attwood I’d read some years earlier.  In it, one of the female characters describes being repeatedly molested as a child, and that her response to this was to leave her body, so that she wouldn’t feel everything that was happening to her so intensely.  This is one of the things I love about novels—they teach so much.  They teach you things you don’t know you need to know.  I had thought, at the time, that Attwood was speaking metaphorically or at the very least, metaphysically.  People don’t really leave their bodies, and if they do, it happens very infrequently.  It took a few years for me to realize that Attwood and the hypnotherapist had it right.  We do leave our bodies.  We hover around them because we have so much about which to think—or so much from which to escape.

My departure from my body was mostly because of the pain. I couldn’t understand why meditation teachers kept wanting me to scan my body.  I knew what my body felt like.  It hurt.  A lot.  I didn’t need to know anything more about it.  I didn’t want to know anything more about it.  I wanted to feel something different, something better.  So I took off, without realizing it, without meaning to, I just left.  It seemed better that way.

But it wasn’t. My retreat from pain was also a retreat from my life.  I became less connected to myself and to everything else.  How can you truly taste an orange if you’re not really there?  How can you taste any of the fruits of life, if you are constantly running away?  Though perhaps, I wasn’t experiencing as much pain, I also wasn’t there for myself.  I had less agency in my life, less ability to accomplish things because I was taking refuge in fantasy and a future that might never come.  Leaving can be okay for a while.  Sometimes we all need a break from reality, but I came to realize that for me, giving up the pain meant giving up everything.

And even then, the pain chases me. Without my attention, my body becomes tenser, harder, unforgiving.

I have taken to doing body scans again—nothing formal, usually it’s when I lie down to take a nap, and I often fall asleep before I finish. But I try to feel the full weight of my body falling into the bed.  I start at my feet, feeling them, expressing some appreciation for them.  I work up my body in this way.  Relaxing into the pain.  Filling the entire volume contained by my skin with my presence, flooding the space between my cells with my being.  Some months ago, without really thinking about it, I started telling myself: This is my body.  It seems kind of silly to remind myself of that and as anyone who has spent much time going to a Catholic church knows, those words can’t help but remind me of the mass.  It seems appropriate somehow, though—that here be an inherent holiness to those words.  That fully inhabiting one’s body could be a sacred act.

When I do this, the pain does not go away, but I feel more relaxed. I feel like my body and I are in this thing together.  We are not at odds.  We are not separate.  I believe, I know, that I am more than a body, but I am also this body.  This body is home.

The artwork for this post was inspired by the work Austin Kleon and Cindy Shepard. If you like it, you might want to check out their stuff, too.  Also, if you enjoyed this post as a whole, please consider sharing it.  🙂

CFS, Mindfulness, Sickness & Health, Writing, Writing & Reading

The Power of Small

I crashed last weekend—exploding pain, unforgiving tiredness, the works. It was particularly disappointing because I had been starting to feel like I was building up a head of steam—moving in the direction I wanted to go.  I had plans.  I had thoughts and ideas sprouting and multiplying.  There’s so much I want to do!  And then plop—the other shoe drops.  It happens to all of us—we feel energized to make exciting, positive change and something happens that we didn’t plan for or something reoccurs that we should have seen coming.  A fly gets in the ointment.  A wrench is thrown into the works.  Our best laid plans go so infuriatingly awry.

When this happens, my instinctive reaction is to do a post mortem: What happened? What did I do wrong?  What did I not do?  This picking apart usually takes place in the presence of my mother, who listens patiently and then says, “Or maybe it’s none of those things.  Maybe it’s just the cycle.  Maybe it’s just what’s happening now.”  At which point, I take a deep breath and grumble, “Yeah, maybe.”

Of course, she’s right. Most of what’s going on is beyond any sense of my control, and I just need to ride it out.  My struggle with it, however, has to do with my expectations.  They have a tendency to get away from me.  I do one thing and then want to, or feel I should, do more and more.  Some years ago, a member of my then writing group brought up the notion of setting a deceptively small goal.  I took to the idea and kept telling myself to “start small”.  However, in the hands (and mind) of a Type A personality, this mantra developed a major flaw.  I might be willing to start small, but all too soon, my mind says, Hey, we better put the pedal to the medal if we’re ever gonna get anywhere! Which, of course, devolves into a wild attempt to do more, which in turn tires, overwhelms, and frustrates me to the point where I am ready to throw in the towel.

start-small-snail-dianaklein-comIn light of this, my new motto is: Start small—and then keep going small until you get whatever the thing is you need to do done. It doesn’t quite trip off the tongue, but, when I think about it,  it is pretty much how I made it through college.  When completely cowed by the mountain of writing I needed to do and the soul-crushing fear of not being able to do it, I would start by opening a document, forcing myself to add one sentence (more if I could) and then, moving to the next paper, do the same.  I would rotate through all of my current projects in this fashion.  Write a line, switch, write a line, switch.  After I had a draft down, I could go back and check for cogency and fix any problems, but it was getting that first layer down that was the biggest challenge—which I overcame only by taking it piece by piece, sentence by sentence.  I still write this way when I am stuck.  I ask myself, What’s the next line? I don’t think about what will come after.  I only have to write one sentence.  And once that’s done.  I do it again.

It can be hard to commit to small steps like this because societal norms so often tell us that if you can’t have the thing you want by tomorrow, you’d best not pursue it at all or worse, it’s not worth having.  I mean, why even bother?  Many of us, when we decide to turn over a new leaf, want to jump in feet first. You see books on lifestyle makeovers and they are all about making wholesale changes to one’s life.  We tell ourselves, we will do everything according to this new code: eat better, sleep better, do yoga, meditate, be creative.  And we forget that our lives are still our lives.  I think people feel either: that they want to change everything all at once without regard to whatever else is going on in their lives or that they are too overwhelmed by their lives to make any changes at all.

do-the-thing-you-can-do-the-power-of-small-dianaklein-comThere is an alternative. Start small.  Do the thing you can do—this is advice I have given myself regularly over the past 20 years (when I haven’t been busy trying to outsmart myself).  If you can meditate for two minutes a day, then meditate for two minutes a day.  If you can eat more vegetables, but can’t eat less sugar, than eat more vegetables and don’t eat less sugar.  And, *this is key*, don’t let your mind sell you a bill of goods that you are somehow falling short!  The saying A journey of a thousand miles begins with a single step is, perhaps, a cliché, and, of course, you do have to take all the succeeding steps after that first one if you want to get to your destination, but if you tell yourself that that first step is not, won’t ever be, enough, you will never take the second.

I have big goals. I don’t know if there are enough steps in this body to get me there, but I want to keep walking towards them.  I want to do the thing I can do, consistently, and be proud of each step, giving it the recognition it deserves, because, in a one million-step journey, step number 45,682 is no less important than number 999,999.  Without either, small, seemingly insignificant movement, you will never reach your goal.

If you enjoyed this post, please consider sharing with a friend!

Art & Crafts, Nature & Spirituality, Sickness & Health, Writing & Reading

Invoking Saint Frida

I spent a lot of last weekend in doubt. This is not an unfamiliar place for me.  I frequent the land of doubt on a regular basis.  The source, this time, was my last two posts on running.  Should I, as a CFS sufferer have written about that?  Should I have admitted that I can run now and again?  That right now I am choosing to run, even when there are many other things I cannot do?  When, on a good day, I can only work about four hours?

I felt strange when I started running again in August. I almost didn’t want to see my sister on my run because I was scared to admit that I was able to do it again.  The fear came from two places 1)I didn’t want anyone to think that this meant I was all better, and now could do anything and everything, i.e., I didn’t want people to expect more from me, because I knew I couldn’t give it.  And 2) I was ashamed.  I was ashamed that I was choosing to run rather than do something that might make money or make someone else’s life better.

And when I shared my two posts about running on this blog, I again felt conflicted and scared, and yes, ashamed because I am always scared of what people will think of me. I am scared that they will think I am weak, stupid, free-loading.  I am scared other CFSers will get upset because they aren’t able to run, and my posts might give the impression that they should be able to.  Or maybe people will think that I don’t really have CFS or any other illness since I can exercise at all.  CFS is a highly variable—not only among the afflicted population, but also in an individual.

On Sunday, I listened to a wonderful dharma talk from Tara Brach about how we try to control so many aspects of life and how these attempts ultimately remove us from those things that most make life enjoyable, namely connection and presence. I realized that (once again) I was trying to control what others think of me—my family, my friends, and all the good people of the internet.  And the truth is: it’s a fool’s game.  There is no way to win.  No matter what any of us say or do, no matter how perfectly we curate our feeds and our public lives, someone—perhaps many people—are going to take issue with some aspect of our behavior.

And it’s not always about us. As a senior in college, I took a class that was meant to integrate all that a student had learned within his/her major.  At the beginning of the semester, we were given a list of about 75 names and theories which we were instructed to look up and study independently.  At the end of the semester, we would be given a test on the information—20 questions, matching.  We were warned how challenging it would be and that often students did not excel at it.  I (for some inexplicable, bloody-minded reason) decided to attempt to ace it.  I spent hours looking up the names and making notes on whatever I thought the professor might think was pertinent enough to test us on.  And then I carried my little index cards everywhere, pulling them out whenever I had downtime.  When the professor gave back our tests, he told all of us that someone—not naming any names—had gotten a perfect score—something he hadn’t seen in a while.  I didn’t show anyone the 100 at the top of my exam paper, but as we filed out of the classroom, the other students looked at me knowingly.  One woman, who I had hitherto considered a friend asked, “Did you sleep with him?”  I didn’t even know how to respond.  I was so horrified and confused.  “How could sleeping with the professor have helped me on an objective test?” I wanted to ask, at the same time wanting to demand, ”How dare you?  Is that really what you think of me?”

I am convinced now that it wasn’t what she was thinking of me that caused her to lash out in that moment. It was what she was thinking of herself, how she was feeling about whatever grade she had or had not gotten.  In that scenario, I did everything right.  I worked hard and I achieved success.  And somehow, my behavior (or her reactions to my behavior) still caused pain.  If I were to get it twisted, I would think that I maybe I should have dimmed my own drives and accomplishments to make her feel better, but I think we can all agree that that would have been ridiculous.

What’s the answer then? I don’t know what it is for others, but for me, it’s to forget about trying to control others’ perceptions, and, instead, whip up as much daring as I can in order to be authentic—because I think that’s one of the ways we help each other (and ourselves)—by being vulnerable, being honest, and sometimes, admitting that which is difficult to admit.

invoking-saint-frida-dianaklein-comAs I think about these things, my eyes fall on a candle that lives on my desk. It’s from a line called Secular Saints by philosophersguild.com.  It looks like the regular seven day prayer candle with which most Catholics would be familiar, but instead of featuring the Sacred Heart or Saint Jude, it bears a portrait of Frida Kahlo.  I have long felt a deep connection with this Mexican artist, not only because she composed fascinating and bold paintings, but because she did not shy away from letting people know what she was feeling—the physical and emotional pain that walked with her throughout her life.  She did not try to be perfect—if anything, she exaggerated her perceived faults.  And though she is not a saint in the Catholic sense, I feel myself wanting to invoke her audacious spirit.  There’s a “prayer” on the candle which I like well enough, but my personal petition goes something like this:

O feisty Frida, help me to embrace my flaws and everything that is wrong with my life. Help me to know my true self and to show that self no matter who is watching.  Help me to be brave and bold and to act with resolve and passion.

 What keeps you from being authentic? Do you call on a saint (secular or otherwise) to help?

If you enjoyed this post, please consider sharing it with a friend. Thanks!

Nature & Spirituality, Prose Poetry, Sickness & Health

The Sighs of a Little Grey Cat

Sometimes, I think I live only for the sighs of my little grey cat.

I breathe solely for those moments when she creeps cautiously onto my tender abdomen as I lie on my bed, worn out and vulnerable.

And she discovers that the crevices in my body meld perfectly to her own. She finds that all boundaries between us are purely artificial.  Her fur, my clothes, our skins become completely permeable. She relaxes her muscles into mine, allowing her very essence to seep down into my being. Our blood vessels become a greater network, somehow effortlessly pumping through feline and human without care for the difference.

She feels all this and she knows that she is home. She knows that she is safe. And because of this, she exhales completely, allowing every, last, tiny cavity of her body to be emptied. She saves nothing. She holds back no secret store to guard against some future scarcity. She lets it all go. All that she needs, all that she will ever need is here in this moment, on my belly.

She tells me this with her sigh, and I cannot help but be moved and awed by her trust, her faith—in the whole of this kaleidoscope universe—and also in the subtle rising and falling of one human stomach.

Sickness & Health, Writing & Reading

Improving Work Space Happiness

I live in an apartment, so my office is also my bedroom, music room, and art studio.  I am lucky that it’s a decent sized space into which I’ve been able to fit two desks, two large bookcases, a filing cabinet, my harp, music stand, and chair, as well as my bed.  It’s not ideal, but it works—sort of.  Lately, I’ve noticed that my body mechanics at my writing desk—a lovely, old, hinged slant top—have left something to be desired.  I didn’t have enough leg room and, because of the height of the desk, I was continually leaning forward—good for my abs, but terrible for my neck and shoulders—and made even more crippling when my little, furry writing assistant demands to lend her brilliance by sitting in my lap.

One of the problems with being sick with CFS (or as the Institute of Medicine has now termed it, SEID), is that time becomes even more precious.  On a typical day, I usually have 2-4 hours during which I feel somewhat normal.  Even though I do tend to have pain, my brain and body still function with reasonable ability.  Anything that requires any kind of physical or mental stamina must be done during this window.  It’s hard not to feel like shopping for a new desk is a lousy use of that time, but given the amount of time I spend (and hope to spend) at my computer, and the amount of pain I already feel due to my ill health, I decided that a new desk would be a good investment in my future wellbeing and productivity.

So, after a lot of online research, a lot of measuring, and a lot of miming my typing habits at various work surfaces, I picked my desk.  But just as I was ready to inform the lovely people at my local office supply store, I realized that there was no way my laptop was going to fit on its pull out typing surface.  What to do?  Give up?  This was the desk—the one that was going to fit in the space allotted, the one that coincided with my price point, the one that seemed to meet my needs in the best way possible.  I thought about it for a minute and decided to go look at the wireless keyboards.  What if I bought one of these as well and basically just used my laptop as a monitor?  It seemed like a good solution, but the thing about me (one of the many, many things) is that I tend to be scared to spend money.  I don’t have a lot of it (who does?), and I am just about always nervous that I am spending it wantonly.  I was already a little trepidatious about the desk, was I now just overcomplicating the situation to the nth degree?  Was I trying to force something that didn’t fit?  I wasn’t sure.  But when I sat with it for a moment, it kinda seemed like the right thing to do.  So I took a deep breath and handed over my credit card.

When I got home and put the desk together, I was relieved to be delighted with how it fit into my space.  I also noticed that when I pulled out my new keyboard, I discovered that having the screen farther away from me was much more comfortable to my neck.  I found a workspace body mechanics illustration online that confirmed that one’s screen should be 18 inches or about arm’s length away.  So, by making the uncertain purchase of the wireless keyboard, I had actually solved another problem of which I hadn’t yet been aware.  Looking more closely at the ergonomics diagram, I also realized that my computer was sitting too low on the desk.  My natural gaze fell higher, so I was having to make continual micro-corrections that was tiring to both my eyes and my neck.  I solved this by placing a favorite book of fairy tales and an air mat (for keeping the machine cool) underneath my computer. Fairy Tale Support I love seeing the book there as I type away.  It reminds me of my deep love of stories—one of the main reasons I started to write.  And now, as I am slowly arranging my workspace, I find it becoming more and more inviting.  Even as I enter the room and glance over, I find myself thinking, “Oooh, I like that spot.  I can’t wait to get over there.”  This was a another goal I had aspired to some years ago—reasoning, that if I wanted to get myself to spend long hours writing, I better make the area in which I am doing it a place I really want to be.

Work Space

I am sure there will be more adjustments to make as I go forward.  For one thing, I still have to train myself to keep sitting properly—keeping my feet flat on the floor, leaning back into my lumbar support (a small, lavender-filled pillow given to me by my mom) and reminding myself that my shoulders aren’t actually meant to be next door neighbors with my ears.  For another, I have to keep my resolve to get up, stretch, and get a drink at least once a hour (even if it means offending my writing assistant), but I am excited to have a more comfortable and pleasant space from which to tackle some of my goals.

Writing Assistant

Thank you for reading. 🙂

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.