(Sung to “Defying Gravity,” with apologies to Stephen Schwartz.)
Something has changed within me
Some parts are getting tight
I’m through with tiny buttons
Give me sweatpants day or night.
Too late for second-guessing
Too late to go back to sleep
It’s time to trust the methotrexate
Twice a day, it ain’t cheap.
It’s time to try to rely on gravity
No time to cry, I’m relying on gravity
I think I’ll try relying on gravity
And scleroderma can’t pull me down.
Gravity. Despite keeping everything on Earth from floating away, gravity gets a bad rap. Humans are always trying to defy it with jets, rockets, and Broadway musicals. Plastic surgeons finance their latest Maseratis thanks to the effects of gravity on their over-50 clientele.
But with the progression of scleroderma and the constriction of my fingers, I’ve found gravity to be a faithful friend.
Getting a secure hold on glass jars with my claws, formerly known as hands, is usually a futile endeavor. When an item is on a high shelf it comes down to how much I really want it. (Triple the amount of grape jelly and anchovy paste can really substitute for peanut butter.) That’s doable for home, but when grocery shopping I don’t want to be limited to waist-high product placements. I’m on a mission to acquire everything on my Hello Kitty-themed product list.
More often than not, a couple of items I need will be on the top shelves. When I was younger, 5’4”, and scleroderma free, I could reach top-shelf items with ease. Now years wiser but a good inch shorter, I’m as stretchable as the Tin Man from “The Wizard of Oz.”
My initial strategy was to snag a passerby to help me get items. Before COVID-19 this was relatively easy and 100% of people would gladly help. Now, approaching a stranger in the 6 feet “hot zone” and masked up like a bank robber, my achievable rate has dropped to under 20%. So, I rely on gravity to drop the item down to me.
On my tippy toes I can usually brush the jar to the edge of the shelf and hope I catch it before it hits the floor. However, because my hand-eye coordination is so bad that I cannot hit the side of a barn — in PE class I was always the kid they put out in right field — when I shop it’s not uncommon to hear over the store speakers “Clean up on Aisle 4.”
It was noon on a winter’s day in Shanghai. With my dog in tow, I bundled up in a down-filled parka, mittens, hat, and sheepskin boots, even though I’m sure the temperature hovered around 50 degrees F. Lunchtime brought massive waves of white collar workers to the outdoor street stalls, hoping to scarf down a bowl of steaming noodles in their half-hour respite. My year-old puppy who was bred to pull carts charged at a loose dumpling on the ground and knocked me over. It’s hard to get up gracefully when your body is fused like a stiff board. It’s harder still when you’re wrapped up like the Michelin Man’s less famous cousin. I felt paralyzed, like a turtle on her back. I tried to generate enough velocity to get upright by rocking side to side, but it just resulted in greasy smears on my coat.
Gravity was not being my friend at that moment, lying there in the food street alley, gas-powered scooters barely missing my outstretched limbs. The lardy sheen of 6-week-old cooking oil wafted down on my face — could use more garlic, I thought. I felt surprisingly peaceful. I had accepted my lot.
Whether gravity and scleroderma were friends or foes or both, through my ongoing journey I finally learned that patience is better than panic.
Sure enough, two very sweet and dainty Good Samaritans reached down to pull me up. It was obvious they needed more heft to be successful, so a noodle stall owner came over to help. I would say it was out of kindness, but considering I was blocking her entrance, I think there was some self-interest involved.
And it’s time we try to rely on gravity
No time to cry, we’re relying on gravity
We all can try relying on gravity
And scleroderma can’t pull us down.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
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