Fibromyalgia – Diana Klein

Making peace with reality

October 14, 2022 Diana

I am in the middle of what I have just decided to call “the October grunts”. It’s that time when the weather changing from summer to autumn wreaks havoc on my body. The fibromyalgia pain activates, allergies intensify, fatigue wraps around like a suffocating blanket, and I often just feel like lying around moaning.

I am wrestling with reality. A part of me insists that “this shouldn’t be happening.” Another chastises me for being lazy. And another devises ingenious plans for how to surmount my obstacles—often through the meticulous employment of a planner, countless colored pens, and a compassionless iron will to keep soldiering on no matter what.

The wisest part of me knows that this is just the way it is right now. It invites me to inquiry. “How can these limitations serve me?”

They can instruct me in the wisdom of kindness—which is always a good idea, even when I’m not struggling.

They can remind me to, as Thich Nhat Hanh’s said, “Go slowly, breathe, and smile.”

They can help me implement the advice of Martha Beck (from whom I learned life coaching) to take turtle steps toward my goals because, right now, I don’t have the ability to take any other sized steps.

They can bring me back to the moment, back into my body to discover the places where the pain is caused by the way I’m holding my body rather than by something over which I have no control.

They can encourage me to not overthink things and, for heaven’s sake, stop pretending that perfection actually exists!

I would much rather not have them, but these “limitations” can serve me in any number of ways . . . if I let them.

How, if at all, are limitations serving you?

CFS, Reading, Sickness & Health, Writing & Reading

Coming Home to My Body

November 4, 2016 Diana

curiously-smiling-attentively-coming-home-to-my-body-dianaklein-com My 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. 🙂

Running, Sickness & Health

Interval Training with Runkeeper

September 30, 2016February 3, 2017 Diana

I love running, like love it, love it. I love the sense of freedom I feel when I’m trotting down the road, an easy breeze in my face, a powerful playlist in my ears. I love it. But I also have Chronic Fatigue Syndrome. As you may imagine, the two things are somewhat at odds with one another. That being said, it’s important for me to stay active. Though doctors don’t know a lot about how to help CFS patients, most agree that regular exercise is vital. So I walk every day. I’ve noticed that although I don’t always feel good doing it (and sometimes I feel downright awful), if I don’t do it, I won’t necessarily feel any better, and often, I’ll feel worse. So there has been many a day when I have shuffled through my neighborhood getting blown past by friendly, speed-walking grannies and gazing jealously at runners bouncing down the street. But there have also been times over the last 20 plus years, during which my body has been able to run and—praise all that is good and wonderful—this is one of those times.

When I began in August, I determined to do it slowly. I have the tendency to go whole hog on things. I always want to push myself to do more, achieve more, but my long experience with this stuff has taught me: that way ruin lies. In light of this, for the first few weeks, I simply ran on the days I felt up to it for between 10 and 15 minutes and then walked home, always making sure that I was covering at least the same amount of ground that I would have during a regular walking day. I was using the Nike app to track my runs, but after several annoyances in the past and a recent update that caused still more irritation, I finally threw in the towel. I decided it was time to shop for a new workout tracker.

After looking at a few, I finally settled on Runkeeper. It tracks my runs via GPS and gives all the statistics one would expect—time, distance, pace, calories burned, etc. There are even a selection of fun voices to choose from to give you those stats and to cheer you on—such as Boston Fan (think Good Will Hunting) and Y interval-training-with-runkeeper-dianaklein-com our Conscience (somewhere in the realm of a goofy Tony Robbins?). My favorite is Mademoiselle—a spritely French lady who tells me that I am fast (though, clearly, I am not) and maybe not completely helpfully encourages me to “Think of all the pain au chocolat now you can eat!”(I have thought about it—a lot.)

Runkeeper also offers a series of challenges to help motivate—one of which was that if I did a mile workout in the following two weeks, it would give me a month free of its premium service. As I generally walk more than 2 miles a day, this was not too difficult. Among other things, the premium service offers a series of workouts for each week based upon your previous running experience and the goals you are looking to achieve. Cool, I thought, let me try this. It only took a quarter of the way through a 30-minute workout, for my thinking to change to: Argh!!! It wasn’t the length or the intensity of the workout that had me swearing, it was its interval nature. What I hadn’t realized prior to the “run” was that each minute I would be alternating back and forth between walking and running. I would just be getting into a nice groove with my running when a signal would come though my ear buds telling me that it was time to walk. Never again, I thought. And then, Yeah, this kind of sucks, but maybe you should just keep with it and see where it goes.

I did stick with it. In the last four weeks, I’ve been following the prescribed four workouts a week and doing my regular walking on the other three days. As I have progressed, the intervals of running have generally become a bit longer, while the walking intervals have stayed the same and while I don’t particularly like having to stop and walk, I think it’s been good for me. It’s demanding that thing that I am so often reluctant to give myself—rest.

When I began running as a chubby middle-schooler, things were different. Those first few weeks of cross country practice our coach would lead our team of seven, five girls and two boys, over the lovely grounds of a local college campus. I huffed and puffed at the back of the train, knowing I was holding every one up and hearing about it once or twice from the cute eighth grader with the floppy brown hair—as if my face hadn’t been red enough from the exertion. It got better. I got faster and stronger, and though I never made it to the front of the pack, I ceased to feel embarrassed by my every step. The problem was that I always seemed to be dealing with some pain or other—knee, ankle, what have you—probably because I had gone from doing nothing to running somewhere between nine and fifteen miles a week. That’s the way they did it back then. You started running and just expected the first two weeks of training to be a hell during which you hobbled everywhere as your legs continually screamed about how mean you were.

In contrast, interval training eases a person into the process of running. And, as I’ve said, it seems to have been useful to me as I attempt to rebuild my running practice, but a few weeks ago, I discovered there might be even more to it than that. I found out that the Runkeeper training program is based, in part, on the work of Jeff Galloway—an Olympian who trained with all the greats in the seventies during the last golden age of American men’s distance running (though, if the last Olympics are any indication, we may be on the verge of another). Interestingly, despite the fact that the old school version of training dictates that walking during training is a fate worse than death, Galloway’s Run Walk Run Method advises one do just that. He claims that not only does it help to reduce injury, but it also produces faster times. He even suggests walking during races. Doing so helps physically, by allowing the body to recover slightly, instead of going deeper and deeper into oxygen debt, and cognitively, by giving the runner a series of smaller goals to reach (just run these next two minutes, then you can rest) rather than an overwhelming one (run a whole 10k).

My month of free premium service on Runkeeper ended last week. Will I continue? I’m not sure. I have to admit, I would get a little excited each Sunday morning waiting for the notification that my workout schedule had been delivered to my app. What’s in store for this week? I’d wonder, What’s next? The drawback for me is that I fear the workouts will progress too quickly for me—demand too much. As I am not a regular healthy adult, I can’t just expect that I will be able to continue upping my mileage and exertion. There will be a cap, and I have to be careful that I don’t get caught up in the excitement and do too much. It would be nice if the app offered a maintenance program or that a user was able to indicate how fast he/she wanted to increase.

Regardless of this, I think I will stick with the interval training. It seems to me that I am running more than I would have if I trained the old way. I am certainly running faster—which hopefully improves my muscle development. The big test will, of course, be longevity. I am hoping that the interval training—if I’m cautious with it—will help me keep my compromised body running (and walking) for several weeks (months? years?!) to come. We’ll see.

Now, about those chocolate croissants . . .

What about you? What running apps do you use? What do like and dislike about them? Have you tried some version of the Run Walk Run Method? What do you think of it?

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CFS, Nature & Spirituality, Sickness & Health

Make Way for Compassion!!

August 21, 2015August 21, 2015 Diana

I think I’ve probably written this here before, but I’ll say it again: I don’t like to talk about my being sick. It feels like I’m making excuses or just complaining. I find myself extremely boring and self-conscious when I do. But it’s a fact of my life, so, in order to be authentic, sometimes, I just have to suck it up and do it.

This happened recently when I met up with a friend that I hadn’t seen in some 18 months. It was uncomfortable, but I decided to tell her a little about how hard the previous 6 months had been—that I’d been having trouble stringing together more than two okay days in a row. She paused, looked at me deeply and said with great sincerity, “Diana, that’s terrible.” I felt myself start to squirm in the face of this expression of true compassion. For that moment she had placed herself into the trenches with me, feeling the mud and the cold and all the nastiness. I was both awed and made uncomfortable by her reaction. I could feel my defenses starting to rise. Defense against compassion! I realized how ridiculous that was, so I deliberately attempted to relax into the feeling, dissolving the walls that thought they were keeping me safe, but were, instead, cutting me off from kindness. I tried to allow her compassion to wash over me, to touch the parts of me cowering in the hidden caves of my psyche.

A few days later, in conversation with a new acquaintance, the fact that I have health problems again came up in passing. With little information and without asking for more, the woman I was speaking to offered the same kind of compassion my friend had—open and encompassing. Again, I was awed, but this time, I didn’t try to brush it away. I just said, “Thank you.”

A week ago, I was able to “pay it forward”, so to speak, when the young woman who was dishing out the prepared salads at the deli told me she had been suffering from insomnia. When I expressed concern, she replied, “It’s okay. I’m young.” “No,” I countered, “it’s not okay. It’s lousy!” I don’t know if it made her feel cared about or, in any way, better, but we shared a smile that felt genuine and heartening.

These experiences taught me two things: 1) Expressions of compassion do not have to be longwinded or elaborate. They just need to be made with earnestness and presence. And 2) All the compassion in the world won’t do you any good, if you’re not willing to receive it.

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Sickness & Health, Writing & Reading

Improving Work Space Happiness

March 6, 2015October 4, 2016 Diana

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. 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.

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.

Thank you for reading. 🙂

Nature & Spirituality, Sickness & Health

Real Work

January 23, 2015May 7, 2015 Diana

“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

January 16, 2015January 23, 2015 Diana

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.

Sickness & Health

Invisible Awareness

September 14, 2009May 7, 2015 Diana

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/

Sickness & Health

The Shameful Truth(s)

July 18, 2009May 7, 2015 Diana

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.