Invisible Illness – Diana Klein

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/