It’s the season of dropping things, hips and elbows knocking door frames, “Will this flare ever end?” weeks, buckling knees on flat ground, brain fog competing with memories of the years when I felt younger than my age.
It’s the season of “But you don’t look sick, you look Great!” and “Have you tried yoga?”
It’s the season when, as soon as the door latches shut, the safety of our homes becomes the hell of letting our guards down, removing the mask. Our yoga is the inching off the bed on our bellies, gripping the prescription bottle to suck down a pill and doze for 30 minutes in half-inchworm-half-human-pose before grasping our walker to pee in the middle of the night with shuffle-steps amid stifling stiffness and the pain of partially fused joints that used to swim in the joint juice of cartilage. Chronic yoga.
“Yes, I already do yoga. Maybe I’ll show you sometime.”
Life has shifted from early days post-diagnosis when we baptized pillows with explosive tears to today: a face sternly resolved in unflinching strength from the trauma of never-ending pain. Emotion seeps beneath the surface of our mask only for special occasions, when we’re too tired to stifle the raw feeling, or when a baby makes us laugh. People look at our chiseled faces worn by the grief of incurability, unable to see beyond the pleasant facades we’ve practiced putting on so well before we leave the house.
Today’s facade needed the dust blown off, it’s been a while since the “break glass in case of emergency mask” has been used, but the holidays are approaching and people are breaking out the old, “Wow, I haven’t seen you in a year but you must be better by now” chat.
I’m never going to be “better.”
“Thanks, you look great, too. How are the kids?”
Social media cradles us in pockets of safety within our disease community groups, but there’s a war raging out there on public feeds, and if we decide to say we’re actually not OK and post a selfie of our true pain for real people to see, we better have that emergency mask-in-a-bottle to spray our face back on – it feels like mace, but that’s lower on the pain scale. The war against permanence rages on, we should be better by now.
“I’m so sorry,” I say. “I’ll never post a real picture of myself again. I should have thought before forcing you to see my pain.”
“But why haven’t you tried yoga?” they respond.
“The doctor will see you now,” the nurse says.
We parade behind the scrubs of nurses with our shuffling feet, carrying bags – baggage – of the ghosts of pills we’ve swallowed, and updated medical history scrawled across pages with open-ended lines too small for our lives, and a cane we grasp with swollen hands – or we wish we’d remembered it, this one time. The scale looms flat from the floor with digital promises of weight that doesn’t show the burden of disease, and blood pressure cuffs measure our anxiety from the prison of an exam room with a skeleton model wearing a hand-knitted scarf.
We know our place.
Doctors deny our pain on exam room tables with crackling paper sheets, staring at our souls through clinical lab results as we sit, half-clothed in a paper doll suit staring at their faces glowing from the blue-light computer screen. The rips and tears in the paper sheets seem so tragic, so extreme, so raw, from our weight shifting uneasily while the doctor peers into the abyss of our bodies displayed in numbers splashed across a scrolling screen.
“The doctor will see you now.” We’re still waiting to be seen, sitting there.
I was gonna be the kidney donor, the bone marrow donor, the regular blood donor.
I was gonna be the founder of a nonprofit, a marathoner, a happy mother of two.
“How’s your mental health?” the doctor asks, glancing at my feet.
I was gonna be so much more than what I am.
“It’s fine,” I say. “I mean, better,” I say, “the depression pills are doing their job, I guess.”
“Your blood results are in the normal range,” the doctor says. “That means the new meds are working.”
I’m still hurting. Same as ever. Nothing’s changed. My lab work always looks normal. Geez, doc.
“Oh, that’s…erm…surprising. So what next?”
I point to my inflamed wrists, ready to explain they’ve gotten worse, to see if she’ll notice me gesturing.
“You’re good to go, see you in three months!” she says, finally turning her head towards me. And offering her hand – only the second time in 5 minutes – she already has a foot in the hallway. “You’re doing great! Keep it up, whatever you’re doing. The exit’s to your right.” And she warp-speeds into the hallway, leaving the door frame gaping like a wound. I feel empty in the exposed room. Or exposed in an empty room.
But now I’m so much more than what I was, and will never be who I dreamed. I’m a mind-changer, an educator, a speaker, a martyr. I’m a world-changer, a dreamer, a doer, a survivor. I would have never been me without my disease.
She’s just smiled at a pharma rep in the hallway, her hand already half-twisting the nob of the door to her next 5-minute patient.
“The doctor will see you no-…”
“Doctor? Wait. I’m not done with the appointment. Come back.”
I would have never been me without my disease. The doctor will see me, now.
If you found this post useful in some way, please consider supporting my writing with a $3 tip at ko-fi.com/beingcharis. Your support can help cover increased utility costs from using my air purifier more due to the California wildfires.