Inventorying the Pain

How long has it been since you first learned of your diagnosis?

My life is divided between “functional body” and “dysfunctional body.” But I lose track of where the line exists between the two.

One moment, I was active and ALIVE. (Not that I’m not alive now. It’s a different version of life, though)

I thought nothing of staying awake throughout the night or picking up extra shifts at work. (The idiocy of youth when you’re invincible) I could spend an hour at the gym without a second thought, sweat dripping from the ends of my hair. Spontaneous weekend plans didn’t phase me. And my vocabulary stretched to the horizon, new words locked within the jaws of my memory, ready for a second’s retrieval.

The next moment, I was a feeble invalid, struggling with basic survival. (I made it into a drama—SURVIVAL)

I couldn’t drag myself out of bed in the mornings, and exhaustion came calling for me earlier and earlier—a twisted version of Daylight Savings. (Had the clock rolled forward or backward? Was time playing games with me?) Within moments of glimpsing a treadmill, my muscles cramped and refused to move. I purchased planners and calendars and, crossed off days weeks in advance, made excuses when people called. And I scrambled after three- and four-letter words I’d known since elementary school, watching them disappear into the haze of pain-riddled oblivion.

The before and after mingled in a world of confusion where nothing made sense.

When you first received your diagnosis, was pain one of your symptoms?

I pled with doctors to solve the mysteries behind my failing body. How had I lost my youthful vitality in a matter of months? Where had my keen wit disappeared to? (More precious than gold) Why was I lying awake, counting passing car lights for hours in lieu of sheep?

I considered those hallmarks of health more worthy of attention than the twinges and aches, the cramps and stabs, the misery and agony. No medical professional would bat an eye over an invisible bruise, an imaginary scrape, an impossible contusion. Or so I told myself.

Doctors assumed someone who forced their body onto an elliptical five days a week would feel pain. They didn’t bat an eye over the lingering muscular trauma inflicted on a body kept upright for twenty hours a day.

So I bit my tongue—one more hurt to add to the list—and focused on the details a rational human being would care about.

Have you had more than everyday pain during the last week?

I couldn’t hide from the dreaded physical exam. Medicine’s desperate attempt to lay hands on a human body. Fingers pressed on my arms and legs, poked into my abdomen and back, twisted my feet and hands. All while eyes and ears probed for evidence of the lies I’d spouted seconds before.

Was the casual ache “nothing much” if I couldn’t stand pressure on my shoulder?

Did my stomach cramp amount to “trivial” when I twisted away from gentle prodding?

Could I repeat, again, “I’m fine” after threatening violence from a tap of fingers on my calf?

Skepticism peeled away the layers of my deception. Was I willing to entertain the possibility that more lay at the heart of my declining health? Could I admit to the pain hunching my body into a fetal position—so useful at betraying my brave defense of “hale and hearty?”

On the diagram, shade in areas where you feel pain.

Grudgingly, I agreed to a pressure point test. (So innocuous-sounding: Let a doctor press down on the body for a few seconds. No fancy equipment required. Fun for the whole family!)

One point subtracted for a wince.

Two points taken off if I attempted to swat at the offending hand. (I suspected an additional detraction for the curse words muttered under my breath)

I watched the anatomical diagram fill with marks from head to foot. Every inch of my body responded negatively. The softest depression of his finger in my skin was equivalent to a cattle prod in my nerves.

I accused him of manipulating the test to color in the diagram—a morbid children’s activity.

What things make your pain feel better (i.e., heat, medicine, rest)?

Hearing the diagnosis was intended to make me feel better. I had a “face” to assign to the misery erasing my life. I could give blame to the nightmare turning me into a weakling unable to spell HOUSE on my worst days.

It turned out to be no more than a name.

A word—much longer than the terms I lost in my brain’s fog—unknown to too many. Having knowledge of its existence improved nothing. Writing it within the pages of my medical record offered no sudden illumination. The magical trumpets of relief refused to sound, though I stared at them for hours, willing them to do SOMETHING.

What things make your pain feel worse (i.e., walking, standing, lifting)?

If I wanted to regain my life of “before” (a nebulous concept, but I had doctors who championed the idea), I needed to maintain an active lifestyle. Exercise would keep my nerves, muscles, and joints from seizing up.

If I failed to move, I’d find myself trapped within a body screaming in pain.

Muscle memory got me as far as the gym. I knew the movements required. But my body rebelled. It would consent to no more than a few minutes, capping the flow of pain-relieving oxytocin. (Not for me!) As soccer moms and steroid-riddled meatheads gossiped around me, I fought to put one foot in front of the other. And my bones exacted a toll for every inch.

Movement was necessary for life. But that life came at the price of pain.

If you take pain medication, how many hours does it take before the pain returns?

I became a connoisseur of pain relief.

My arm swept down the pain aisle of the pharmacy with reckless abandon, mimicking my favorite television and movie scenes. (Strangers stared in abject horror) The colored jewels of rapid-release capsules—far superior to tablets—became my mints and candies. I experimented with dosing, pushing the edge of milligram limits like an addict riding the edge of a high.

(Coaxing my liver and stomach to behave themselves under the onslaught)

I laughed in the face of heating pad warnings, the time limit caps of Epsom salt soaks. My body developed a tolerance for the fires of Hell that caused everyone around me to wince. (Or complain if they happened to share my presence in the shower) Nothing was warm enough to bake the pain from my bones.

Check the following adjectives that apply to your pain.

• Aching X

• Throbbing X

• Shooting X

• Stabbing X

• Gnawing X

• Sharp X

• Tender X

• Burning X

• Exhausting X

• Tiring X

• Penetrating X

• Nagging X

• Numb X

• Miserable X

• Unbearable X

I learned a new vocabulary—when my mind consented to hold onto the words. Doctors and nurses wanted more than “pain” as a descriptor for what sent me into their midst. So I raided every Thesaurus for descriptions, painting pictures of agony for their satisfaction. (Few took me seriously, but I found a slight amusement in the exercise)

There weren’t words to describe the way my body turned against me. Babied and treated with the utmost respect, my nerves screamed and tore themselves to shreds for no reason. Abused and scorned in a fit of pique, they whimpered and behaved like misbegotten children. Nothing I did seemed to matter.

I could find no pattern for the rare moments when they calmed and granted me a moment’s reprieve.

How often has pain interfered with your enjoyment of life?

My functional life became a different person. A laughing, vibrant girl with only glancing knowledge of the word “pain.” (Every time she ignored her feet and rolled an ankle) I flipped through picture albums and envied her careless posture and selfish behavior.

Live at the pool? Stretch out on the beach for the weekend? Take off in a canoe without a second thought? Who was this stranger with such lofty dreams? And where did she purchase such a flexible body? (Did it come cheap?)

I stared in the mirror and found a doppelganger. A woman lost in the haze of discomfort. My need to balance the weightlessness of swimming with the crushing gravity found after exiting the pool. Avoidance of the sun’s rays and their punishing UV rays (despite craving the blessed heat). And my body, so determined to freeze at inopportune moments—such as within seconds of waking up.

Looking back, I wondered if she would have behaved differently, knowing I was her future.

Or was that the point? To live without limits while she could?

*Based on the Brief Pain Inventory