The Winding Path

Fall 2018: Pain & Suffering

Posted on Oct 13, 2018

Once again I am combining two months into one blog. Somehow, when this happens, I feel guilty—and that I have to explain myself. I’m not sure of what I’m guilty: Being lazy? Failing? Deep-seated beliefs rumble below the surface. Beliefs I have been fighting for a long time—but most ardently since being diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis nearly 7 years ago.

It occurred to me today that I have never blogged about living with an invisible illness. Well, that’s not true. I have written about anxiety and depression. Those are also invisible illnesses. But we have this strange habit of separating mental and physical illnesses. Which is technically impossible for two reasons: 1) mental illness has a biological location—the brain; and 2) we cannot have a mental illness without a physical body. There is no such thing as separating the mind from the body. Emotions and cognitions all happen within the body—a physical location. So why do we separate them? And even more oddly, why do we classify one as “acceptable” or “within reason” and the other as “all in their head?” That is rather absurd.

However, my “physical” invisible illness is one that usually doesn’t get recognition in any field—and is often wrongly classified as “mental;” and therefore the human’s fault. So we’re back to the crazy notion that mental illness is not physical—and mental illness is judged to be of the person’s own making. I also don’t know how a person can experience debilitating symptoms without any causation (or be self-inflicted).  Why would the brain (aka mental breakdown) mess with one’s body in that way? That makes no sense. I just finished watching the documentary on Netflix called “Unrest” by Jennifer Brea. I was horrified by how some patients are treated—taken away from loving homes and institutionalized without any further family contact! I also felt extremely lucky that my illness is not as severe as others experience it. I am not bed ridden. I haven’t lost my ability to communicate (brain misfiring aside). I am not in a semi-coma. And experts say this is self-inflicted???

I don’t know of any human being on this planet that would make themselves sick of their own volition. Yes, our choices often lead to sickness—but that’s not what we set out to do. And no one asks for anxiety or depression. Those are equally debilitating as the auto-immune illness I have. And sometimes I can’t tell them apart. Is this a depressive episode? Or a chronic fatigue crash?

This afternoon I took my dog for a 2km walk through the woods which tuckered me right out. I used to hike 16km in rocky terrain and make my way up and down mountains! At least I have a past life to reflect upon. Some people in the documentary were children and teenagers who hadn’t even lived yet. Their world consisted of their bedrooms and what they could experience from their beds. I can’t imagine being bedridden. However, every morning, getting out of bed is a struggle. So I could relate to the documentary—ironically as a chronic fatigue crash had me lying on the couch. Once the film was finished, all I wanted to do was rest. My dog had other ideas.

Tonight, I know a bath would be good for me post-massage; but the exertion required for “drawing a bath” discourages me from doing something good for my aching body—and prevent more soreness tomorrow. That’s when it dawned on me maybe I should write about this. It feels like too much work to fill a bathtub with water. Yes, you read that correctly. How can something so simple be far too much work—far more effort than it’s worth? Story of my life: assessing the cost-benefit ratio before pursuing any activity. So, instead of the exertion of bathing, I decided to write about my crash; when really all I want to do is read in bed.

This particular eddy of my thoughts is actually part of a bigger swirling mass in my brain within the theme of suffering well. This is not new to me, but has been resurfacing lately…

…Well, I had to abandon ship last night. My brain refused to keep up. And this morning it was a challenge to get out of bed—prompting me to ponder what it would be like to “give in” to the sluggishness and just stay in bed. It is a push-pull dynamic: grateful I have the energy to push myself out of bed, but always with the anticipation (the pull) of a rest. And never without with the overhanging thought I could/should be doing more. I have innumerable projects I want to pursue to completion, but insufficient mental and physical resources for follow through. And then I punish myself from deep within—those haunting beliefs that I am lazy or failing if I can’t produce/accomplish/achieve. Oddly enough, I asked myself this morning what it would be like to “indulge” in remaining in bed for a day; knowing full well my fellow CFS/ME sufferers who are bedridden often pay for indulging in any form of activity with a crash. So do I—but not as dramatically as seen in the documentary. Push-Pull.

I learned in the documentary that CFS/ME claims lives every year via suicide—the depression consuming their compromised life into appearing meaningless, hopeless, pointless. And it certainly feels that way at times. The struggle is real even if unseen. I feel it every day that I cannot live up to cultural expectations: to earn sufficient money for my daily expenses let alone a future retirement; to attend social functions; to participate in activities that others enjoy easily. I have to plan, starting with assessing the cost-benefit ratio. Asking myself how much effort is required and will the payout be worth the exertion—either mentally or physically—as well as anticipating what the fallout will be if I decline an invitation or an opportunity, and how much time I need to budget for recovery (reducing my capacity to earn money, build connections, etc.).

Jennifer Brea described it has having a battery always at 10%. As you can imagine, that requires frequent recharging for minimal output. We all know what it is like when our electronics’ batteries drain faster than our usage—we get frustrated when our technology can’t keep up with the demand. Imagine what it’s like having a body that can’t recharge to sustain usage.

So, we are left with a predicament. How to manage a perpetual low battery while maintaining enough quality of life to counter the depression that is lurking in the corners, ready to pounce and consume us? This is where the work of holocaust survivor, Viktor Frankl, comes in: the idea of suffering well. Pain is unavoidable, but what about suffering? Viktor states: “We had to learn ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us.” (Frankl, p. 77). If I could capture the “moral of the story” from Jennifer Brea’s documentary, it would be these words of Frankl’s. She is bravely learning what life expects of her as well as teaching the despairing fellow-sufferers to grasp onto that same hope/lifeline.

Frankl borrows from German philosopher, Nietzsche, who is known for a few quotable phrases such as “Was mich nicht umbringt macht mich stӓrker.” (That which does not kill me, makes me stronger.); and “He who has a why to live for can bear with almost any how.” (Frankl, p. 82, 104)  Frankl expands upon these concepts by saying, “[hu]man’s main concern is not to gain pleasure or to avoid pain but rather to see a meaning in his life” (Frankl, p. 113)–affirming my belief that the Western world is very misguided in their impossible pursuit of happiness. Frankl goes on to say,

“There are situations in which one is cut off from the opportunity to do one’s work or to enjoy one’s life; but what never can be ruled out is the unavoidability of suffering. In accepting this challenge to suffer bravely, life has a meaning up to the last moment, and it retains this meaning literally to the end. In other words, life’s meaning is an unconditional one, for it even includes the potential meaning of unavoidable suffering. (Frankl, p. 114).

Frankl’s concept is reiterated in an emotional regulation workbook: “While we can’t always control the pain in our lives, we can control the amount of suffering we have in response to that pain.”  (McKay, Wood, Brantley, p. 9) And at the very beginning of suffering well is the radical acceptance of pain and suffering: it just is. No one escapes it or is exempt from it. So if I can’t avoid it, how can I make the most of it? This is the challenge life presents us. A lifelong work in progress—only ending in death. And some, understandingly, do choose a premature death for very complicated biological, mental, emotional, and social reasons.

So where am I going with all this? I suppose it is my attempt at following the examples of Frankl and Brea: to learn for myself and encourage my despairing fellow-sufferers. Your life, whatever it looks like, counts and matters. It is up to us to choose how to live it/play the cards we are dealt—choose what to do with the Gift of Life—unique to each and every living being.

And so I ask: What makes your life meaningful in all its glory and its limitations?

References: 
Man’s Search for Meaning by Viktor E. Frankl (2006 edition)
The Dialectical Behavior Therapy Skills Workbook by McKay, Wood, & Brantley (2007)