To the Ones Who Go On the Ride of Chronic Illness With Us
This week I stood on a wooden platform. Sweaty, eager teenagers in cut-off shorts holding souvenir cups surrounded me. The soundtrack, a cacophony of nervous chatter about what might happen should the coaster become stuck or spontaneously fall apart and the click-click-clack sound of the coaster slowly rising followed by the thrilled screams of riders.
My stepdaughter and I waited our turn in companionable silence. I tried to extract from the dusty old files in my brain exactly how many years it had been since I’d ridden a roller coaster.
The bell sounded, we stepped forward, placed ourselves within the foam seats where a million sweaty riders had gone before. I made a mental note to sanitize my entire bottom half the second our ride came to a halt. The lap bar came down, we inched forward and suddenly I was 12 years old.
Sitting next to 12-year-old me was my older brother, Matt. We were at Six Flags in St. Louis riding the “Screaming Eagle” – a wooden coaster that sprawled the full length of the park. His presence, the moment was tangible. Our futures were bright. We were young and free. Our dreams were grand. He would grow to be a great man, a Pastor. I would attend his church service every Sunday morning and cheer him on, shout out the loudest “amens” of all.
12-year-old me rode the “Screaming Eagle” with full belief my brother would always be by my side. History gave me no indication to believe otherwise. 12-year-old me planned to ride “The Ninja” next and gave no thought to a time in life when Matt’s body would be ravaged by cancer, and I would someday ride wooden roller coasters without him.
38-year-old me got a lump in my throat as I exited the coaster and had an overcoming urge to call my Mom and tell her how much I love her.
You may have noticed by now chronic illness is a bit of a wild ride. Many of your friends and family may have chosen to sit this one out. Unlike a roller coaster filled with thrills and frills, this ride we’re on is mostly filled with terrifying ups and downs. If you’re like me, more than anything, you just want someone to sit beside you for the harrowing ride.
When my stepdaughter and I sat down and prepared to launch, I completed my calculations and determined it had been close to 20 years since I’d ridden an actual roller coaster. I confessed to her; I was going to hate the first drop, the one where my stomach would plunge. She said simply, “Just scream it out.”
I can’t tell you how many times during this wild ride of chronic illness I’ve needed someone to sit next to me and let me confess to him or her how truly petrified I was of the part coming up. I can’t tell you how many times I’ve needed them to say, “Just scream it out.”
Here’s the truly stunning thing: not everyone I once believed would take the ride with me has, but I have never ridden alone. Whether it’s a check-in text, a meal, child-care or physical aid for my body, I have been loved and supported in a way that leaves me breathless. Does this mean I have never felt isolated, alone, misunderstood, forgotten? Absolutely not! It may mean a sudden drop caught me off guard, and I needed to scream it out until I reoriented and came to the realization my people were still there. The ones who stand beside us may be few, but our lives are forever changed because of their love.
When the choice is ours, to take the ride with others or sit this one out, may we chose to ride, to love, to stand beside, to comfort with the comfort we have been given.
A version of this post first appeared on Chronically Whole.
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