Interlinked

I wrote this weeks ago. It is mainly about limping toward answers to an autoimmune mystery and not needing certainty as much as a baseline of physical ease and comfort. It’s also about fighting and surrender. I have been chronically ill a long time; why do I remain unclear about how to fight? I’m exploring my tendency for flight and escape. When this was written and even now, I’m in the throes of a punishing Lupus flare. My weight is 87 pounds. I looked not half bad yesterday. Today I awoke with a facial rash and uncomfortable lesions. The good news is the pain in the center of my gut for seven years is gone. Poof. Will it return? Waves of rage, scattered memories from the film Blade Runner 2049, and resistance to fight are somehow interlinked.

These glimpses of our home may seem unrelated to today’s topic, but they reflect spaces where i: listen to God, find shelter and sanctuary, and dwell in mystery.

INTERLINKED

17 days ago on Cinco de Mayo, no feast or Margaritas were served where my blood was drawn at a lab in a strip mall. The hallway to the lab is lit with the sort of flickering fluorescents you see in every sci-fi film. What is it about those quiet, narrow corridors with styrofoam ceiling panels dotted with cosmic blue confetti?

The lighting is cool, unnatural, and oppressive. Fluorescent glass tubes of mercury burn a long time and are prized for efficiency, but don’t they always seem one strobe away from total burnout? Strobing is a potential trigger for people like me with ocular migraines. Last month, fluorescent flickers in a discount store caused me to go blind for hours.

Google says fluorescents generate 75% less heat because THEY USE LESS RESISTANCE TO EMIT LIGHT. Lovers, not fighters. Still. They’re always humming. So they’re annoying lovers.

The unearthly corridor leading to the lab where I’ll give blood somehow reminds me of my health journey so I’m paying attention. An ill-fated, outdated, understated path to a sci-fi pergatory where a hand may offer a red or blue pill.

Want to see the true nature of the world and your prognosis or would you prefer to see comfortable illusion?

Today, I need the red.

Too many years of limping toward hope, light, answers, and truth. This medical mystery tour began with Crohn’s disease and continues. I’d like a small interrogation room at the end of the corridor, s’il vous plait. Also, coffee, two-way mirrors, and queries about 40 years of weight loss, inflammation, and flares out of nowhere even on tranquil tropical vacations.

This place I’ll give blood feels like Blade Runner 2049. Not a single window. A futuristic-bioengineered-artificial-everything vibe that feels vacant. Not even a low-talking receptionist to collect my cash and signatures. Just a single kiosk you might mistake for a hand sanitizer dispenser.

There’s a Matrix world inside the kiosk where I scan my driver’s license and doctor’s referral. Was the little dot on the monitor a camera? Am I one more glob of data to be catalogued by robots? Prompts appear on the touchscreen, and as I respond to them, my thoughts turn to Ryan Gosling’s replicant Officer K character. Did you see Bladerunner?

Interlinked. Within cells, interlinked.

The kiosk estimates a twenty minute wait for my blood draw. I sit down with one other human in reception where a single faux succulent decorates the room. My stomach howls. It isn’t hunger; just built-in pain flickering since birth.

When my name is called, I am led to another dim space where I surrender my credit card and the technician chooses a good vein to open. I’m comforted by her softness. Brown skin, long goddess-like braids, and a soothing voice.

Did healthcare workers stop making eye contact at some point in recent history? Nowadays, all of my doctors read notes and values from a computer screen in the examination room. In fact, I haven’t changed into a gown at appointments for years.

In the very spaces I feel most vulnerable, human eyes rarely meet. Screens are everywhere. We’re looking away from each other and still calling it connection.

This round of diagnositics today will demand ten minutes from the technician. Another tech or AI-powered algorithm will peek at antibodies within the blood of my tissues. Data will be analyzed and patterns searched to note how my immune system misidentifies an antagonist in its orbit. Machines will determine how aggressively my body attacks its own healthy cells. The bill for these tests will cost as much as the used car we bought last November.

Interlinked. Within cells, interlinked.

I fully expect the results to be positive for autoimmune disease as they were in January because I feel worse. But I wonder if the other lab values will enlighten us about the flare. Pancreatitis, neuropathy, painful foot spasms, hair loss, ocular migraines, and skin lesions come and go. For years, I have listened to versions of: ahhhh, if the numbers were a little higher we’d start a delicious autoimmune cocktail to heal you, but we’ll track the trends for now…have you tried meditation?

Interlinked. Within cells, interlinked.

What am I fighting? I am at the end of my patience and desperate for a diagnosis before I can choose my ammo.

A few years before my friend Lesley was diagnosed with pancreatic cancer, she was always pressing me to fight. She was decades older and a bright light in my life. My chronic illness paired with a gentle attitude about death worried her. For years, we met weekly for lunch and Bible study, and I was frequently recovering from this surgery or that one.

“You’re a fighter,” she’d giggle as we clinked lemonade or pints of beer. Honey, we have to fight! She encouraged playing tennis, studying the Word, visiting the South of France, and serving on the art board (which I did). From the outside, we could be mistaken for mother and daughter, and she’d pull perfect strangers into our midst to flirtatiously coo: THIS is my blogger. Always spotlighting me as special when clearly she was the radiant one.

I wish I had her wisdom now. And her engaging stories of travel and family. Her paparazzi-chased celebrity daughter in New York was always in the tabloids as a reality star so there were so many juicy bits. It’s not easy to find kindred who share secrets and passion for plaster walls, deep dish with beer, French pastry, AND the Book of Revelation. I’d love to chat with her again about fighting and healing. Are we headed toward the river of life flowing in New Jerusalem? What could it mean for us just now that the tree of life yields fruit, its leaves used for healing (Revelation 22:2)?

My thoughts turn to a different friend from the gym with a passion for expensive cheese and combative strategies to fight negative self-talk. She is fancy yet scrappy…a killer combo.

She would routinely wine-dial me while sipping Chardonnay during my extreme perimenopause chapter which stretched eighteen months. As that season shook me like an estrogen snow globe, she’d slur a fiery gospel:

DOOOO WHAT I DOOOOO! THOSE NEGATIVE THOUGHTS AND WEAKNESS BUBBLE UP IN MY LITTLE BRAIN, AND I KNOCK ‘EM THE EFF OUT. GIRL, I KICK ‘EM AND SAY “STOP IT, STOP IT, STOP IT, STOP IT!” I say stop it and smack my own face, MICHELE. SAY IT OUT LOUD. OH NOOOOO YOU DON’T, BEYOTCH. WOO!

I enjoyed every morsel of the wine-fueled femme fight club monologue with its fervor. And I was never the one to hang up first because I know the voice of love and a liquory love-sermon when I hear it. I know how advice is a gift shared that no one really uses since we only change when we’re ready to change.

Those comedic bits and her fabulous voice mostly sent me off to sleep with a smile, but as far as filling my arsenal with ammunition to slay my inner critic? I never felt compelled to smack my face or assault inner parts that formed only to protect me. I’m actually thankful to those parts for their service to the realm. I remind them I am all grown up now and don’t need all those defenses to survive.

Interlinked. Within cells, interlinked.

Last night I dreamed of an old friend from childhood. In the dream, his brown hair had grown long so he resembled a white Jesus of Nazareth, and we walked the streets of a bustling city at twilight. There was a lot of traffic and noise.

I always wear a crossbody style bag and never zip the main compartment, and he was placing large rolls of cash into it to the point of overflow. I insisted I had no need. I felt both vulnerable and dazzled as he filled my purse.

I could not look away from the eyes of mercy upon me.

Peace to you right where you are.

p.s. as i read these reflections, one could surmise i have frequent lunch dates and colorful phone chats with friends. this aint 2013 so i don’t. no one enjoys talking on the phone anymore, and nearly all of my local friends have passed or moved away in retirement. writing this was a reminder how much community has disappeared for me. thank you for reading with such tenderness and helping the bad bad b!tch feel less lonely.

-michele

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