I posted the following to my Facebook 3/14/12:
My illness continues:
One’s state of physical health can have a drastic, devastating effect on one’s sense of life, hope, and happiness.
The world shrinks when I am sick–my entire universe is the room I’m in, the things right in front of me, and what I’m feeling. All I care about is getting through the immediate pain cycle (which can last hours or weeks), how to do it, and how long it’s going to take.
Where normal urges and experiences spur one to pursue a known treatment course, e.g. Theraflu, rest, and fluids for the flu, the open-endedness, mind scrambling effects, and resulting lethargy of my illness work to suppress anything that might motivate me to exert any energy toward an effective treatment plan, if one existed.
Pain killers don’t work, so they’re not a worthwhile option. I know I should eat and drink something, but doing so makes me ill, and I have absolutely no appetite or thirst anyway. The plan I have to enact here is to set an alarm and force feed and water myself by the clock three to four times a day. Should I suck it up and exercise? Movement is good and produces natural endorphins, right? But I’ve lost 6.5 lbs over 6 weeks and am hovering 30lbs below my healthy 154 lbs. So, I’m struggling to maintain weight, much less meet the caloric demands of exercise. But first there’s the whole body-encompassing, paralyzing fatigue to overcome, which feels like trying to lift a limb that’s fallen dead asleep, completely leaden and numb, with a brain that can’t break out of a disorienting substance induced fog (with no substances on board).
What’s so frustrating is that I was riding my bike an hour each morning for a few weeks–that ended abruptly 2 weeks ago. I have to think, not that a turn is possible again, but that it is probable if I’m going to survive this mess.
Maybe by an intrinsic design of self-preservation the world becomes utterly dark and uninteresting in order to shut me down, so that the maximum amount of metabolic energy and nutrients go into fighting pain and illness. But rest is ephemeral at best: the pain and resulting anxiety keep me up and worried, often in a near frozen physical and mental state for hours on end.
Not until one is sufficiently healthy and near pain free, with the basic physical needs satisfied for the moment, is the mind able to freely focus and expand its capacity to encompass the world and its possibilities, to feel happiness and contemplate things as abstract as values and hope.
Too often in my continuing illness, I think the end of my world has begun. I’ve seen light at the end of the tunnel before, only to discover it’s a freight train barreling down to run me over. Rather than looking into a tunnel, maybe the only light I should look to is the sun . . .
Two months have passed and I’m better. That last pain spiral lasted over three weeks and I was spending all my spoons to get out of it: antibiotic courses, day and night bed duty, food and med changes, deployment of my full artillary against my rebel body:
* Engage in activity: biking, yoga, photography, reading, writing, music, video, meditation.
* Repeat the simple mantra: Breathing in I quiet my Body, Breathing out I calm my Mind.
* Take pain/anxiety medicine.
* Massage where it hurts.
* Lie down.
* Tranquil surroundings, tranquil thoughts.
Biking was out, as I could barely engage in simple supine yoga stretches, and movement often caused me to run nauseated to the nearest receptacle. Photography required spoons I simply didn’t have. Reading was usually a dysfunctional exercise in single sentence repetition. I couldn’t sit long enough to write a complete paragraph, much less think my way through one, and the sounds of music and videos pummeled my overly sensitive ears. Like a neutrino, the most elusive of particles that can spiral through a light-year of solid lead unimpeded, my unblocked pain was transmuting my organic chemistries, scrambling nerve signals, dousing my body in agony. I was left to medicating, getting massaged, lying down, and meditation. The first three choices were manageable enough, but meditating while in pain was simply futile. Throughout each day, I would attempt to calm myself by closing my eyes, focusing inward, and drawing on five years of mindfulness meditation training to find the quickest path away from the rebellion, passively allowing the rebel’s force to pull me down while I imagined gathering its energy for my spring back.
Such imagination was optimistic, yet intangible, because I wasn’t able to reach a state of true meditation, which is realized by the shedding of fears and worries from one’s awareness. I was in a state opposite of meditation — a state of mentation, locked in rumination loops, and it showed. My illness clearly wasn’t invisible. Pain, nausea, and worry turned my face a medically questionable pale green set against a deeply furrowed brow. I exhibited pain behaviors which I had used so long that they had created their own self-sustaining neural pathways, giving rise to a disposition worlds easier to display than suppress. If my appearance made Danusia even slightly nervous, then I figured I had every reason to be terrified. At one point I thought: I’m not sick, I’m fighting death, a thought that was deeply viscerotropic, one that seemed to attack and manifest in my gut. If I could have, I would have vomited that idea away with my nauseated mind. Existence never sees fit to limit our troubles, does it?
My ‘present’ was stormy and threatening, bound on either side by an unspeakable past and formidable future, yet there was no other time in which to exist. And though time seemed to accelerate the decay marked by every one of my physical and psychological hits, it was time that I couldn’t let go of. At my core, I wanted more, more time to experience what life has to offer, and if that meant I had to endure so much of it suffering, so be it, there exists no other reasonable option.
I learned quite a bit about myself during this last pain cycle. Mainly, that things are always changing, every second, minute, hour … and the changes are noticeable if that information is allowed in. Changes in sensations, thoughts, feelings, environment, changes for the worse and the better, often in tandem. It’s this axiom of reality that provided me a glimmer of hope, even when my misery was at its worst: things are gonna change. I struggled just to breathe and spent all my spoons to remain afloat in that lifejacket, my newly grasped axiom of change. The probability of change propelled me to seek the true reverse of pain, not pleasure, but a sensation of healing and growth. How could I pursue or grasp something as abstract and complicated as that when my thoughts were consumed by simple survival and the immediate health of my mind and body?
Simply, I became an observer and watched from a distant vantage point as my mind continued along its natural path toward equanimity ( _*_ ), realizing that ultimately, the mind knows what to do … if you let it.