If I Were the Manic Pixie Dream Girl in My Own Sick Life
I wish my life was a Cameron Crowe movie.
If it were, then after I left my doctor’s appointment this morning, things would have gone differently.
If my life was a movie, my nurse would have been a kindly but bossy woman (likely played by Octavia Spencer) who both relates to me and teaches me the meaning of compliance. She would have been a nurse — even though it was a CT scan with oral and injectable contrast — because all healthcare professionals, whether radiology techs or respiratory therapists, are portrayed as RNs on the big screen.
My IV would have been accessed in one stick, and I would have winced — gallant and stoic — and then cracked a joke to lighten the mood. (That’s 75 percent of my job in this film; it makes the focus groups feel more comfortable.)
The medical procedure would have flown by in a brief but embittered barrage of monochromatic montage (likely set to a cover by Birdy). And when it all was over, I would have driven home in my plucky, yet personable vehicle with the windows down. The next five minutes of cinema would be a serene kaleidoscope of ambient lighting, transient laughter, and the trope of understanding the frailty of life, yet finding strength within it. (Also, my hair would be blown without ever getting tangled.)
In real life, this is not at all what happened.
It took four tries with a catheter needle to finally access a vein (the awkward one that’s wedged between scrawny hand and wrist bone). It took a total of six hours of waiting. It took one can of contrast lemonade, but not two (because my stomach couldn’t handle that much and my feeding tubes started leaking fluid from my swollen abdomen). It took one “People” magazine, many mindless posts on Instagram (puppy filters make my skin so smooth), and more “fishing for gold” quips than I can count.
This is what life with an ongoing illness actually looks like.
It’s coming home to a bunny that’s pooped everywhere and a hermit crab that needs watering (their “lungs” are actually gills and a branchial chamber).
It’s arriving to a daughter who went to the library without me. (The good part is she’s happy, healthy, and literate. The bad news is no one goes to the library without me and survives.)
It’s immediately picking up trash, messes, and muck from children upon entry, and reminding them to, “Empty the sink, please” (the sentence that will be etched on my gravestone one day).
The routine of living as an adult with an inopportune body is neither cinematic nor cataclysmic. It’s just, well, routine.
The tedium of my day-to-day doesn’t denote my arduous morning, the multitude of appointments waiting, or CF clinic next week. This day was consumed by a painstaking, patience-testing task — and when I got home, my home had gone on without me.
No one waits for us, and no one should. There is no time for epiphanies or epitaphs. Instead, “Everything is everything. What is meant to be, will be.” (At least, that’s what Lauryn Hill says.) My “everything” is appointments and antibiotics as much as it is artistry.
This month has not been an easy one. Amid ornery organs and results that are less than ideal, I wish I could have a Cameron Crowe moment or two now and again.
The night before this, I cried silently on the couch next to my partner while watching “Instant Family” together. We both felt compelled by what has always been a mutual connection — the desire to adopt a child together — but knew, without speaking, that finances and health could not currently support it. The day after this, I’ll be at another doctor’s appointment trying to Nancy Drew my way to a simple solution, then pretending none of it ever happened by dance class at 7:30 that night.
Today, however, stuck somewhere in the middle, I found a simple victory in the veins and vices. As I drove home from a CT that consumed most of the hours (in my complete “lemon” of a car that is neither cool surfer girl Jeep or likable vintage VW Beetle), I turned on my latest favorite song.
Pushing up the volume until I could feel it in my core, I let “Harry Patch (In Memory Of),” by Radiohead, soar.
Rolling down the windows for a brief minute and letting my hands interlace with air, I smiled to myself and couldn’t help but think, Maybe it just depends on how we direct our day.
Maybe, just maybe, there’s a little Crowe in every day after all.
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.