Updated: Dec 7, 2020
As of today, I officially don’t have a brain tumor. After 30-plus years of that thought roiling around in my head, and strange olfactory hallucinations for the past 7, 30-minutes and an infusion of contrast dye in a high-powered magnet has cleared up that question.
But this isn’t a story about my brain (read: fears,) wrapped up in decades of post-traumatic stress. This is a story about waiting rooms.
This morning, the pungent aura of old ashtray drifted over me (definitely not a hallucination) just before I heard a rattled smokers cough, both of which strongly signaled her presence before I looked up to see a woman barely at the six foot mark dictated by post-pandemic social norms and the CDC’s Covid guidelines. As with all things Georgia, I was about to make a new friend, born of hospital nerves and southern hospitality. The encounter with a kind stranger was certainly welcome as I waited for my name to be called, and led back to a device that would dictate if my path continued as is, or would deviate to an operatory, as it did for my dad 30-plus years before this moment at his ripe old age of 42.
I regret I don’t know her name. I should have asked, because I know intimate details of her life now. In her 60s, but looks much older. Stage three throat cancer, not her first rodeo. Rounds of chemo and radiation that have left her tired, but still invigorated by her five children, eight grandchildren and two great-grandbabies. Survivor of a brain surgery years prior, and thank goodness a “black fella” recognized she was having a seizure at Applebee’s and told her daughter to take her to the hospital right away, where she came to and received the unfortunate diagnosis. Married and a mother of two by the age of 17. Ready to meet the Maker, if so deemed necessary.
If I could have hugged her I would. And even with Covid currently circulating in every orifice of this country, I almost did. It seemed so appropriate. She was clearly talking through the nerves, even though she was all too experienced with cancer care in this and the surrounding counties and could recommend a great neurosurgeon, if only she could remember the name that started with a C and sounded like Cody. I was frightened too, even if the sensible and reasonable side of my brain was doing its best to overcome the fight or flight battle happening in my nervous system as waited for the test I’d put off for years.
As I listened, and she kept sharing more details, my mind couldn’t help but jump on the time machine train in my head, transporting me back to a time I can’t even pinpoint without first identifying the historical markers of life experiences that would indicate the year. Between dad’s first and second craniotomies, but not the third? I think so. He was still rather lucid. We sat together in the waiting room of the brain specialty portion of a hospital in Phoenix, waiting for his pre-op appointment for the next morning’s big surgery. That place was so massive that I got lost on several occasions trying to navigate the unmarked path from the parking garage to the neuro wing. We'd end up eventually spending a lot of time there, in the future, when he couldn’t wake up from a seizure. In this moment, we were both probably miserable and anxiety-ridden, but our family culture and his inability to healthily process and express emotion precluded us from acknowledging this pervasive fact.
He needed a blood draw and to get all the insurance boloney out of the way. Or is that bologna in this context? Must not be, because this portion of the story is not yet happening in the South. I think we’ve disembarked this train in 2005-ish. The Fried Bologna doesn’t happen until 2012 or 2013 when my life took a detour into Oklahoma for a hot minute. That was a hard pass for me at the Air Force potluck. Back to the blood.
Dad went in for the needle stick, and my all-knowing late 20-something-year-old self strikes up a conversation with a woman and her daughter next to me. I’m not a Southerner by birth, but must be by proxy because I am one damn great conversationalist with strangers. Come to find out, the woman is there for the exact same reason as dad, but it’s her first time. There’s “something up there,” but they’re going to get it out tomorrow, and be on their way. I did my best to reassure her and the daughter that dad had been through the same thing yeeeeaaaaars prior, and this was his first trip up, so surely she would be ok too. No biggie. Get it out. Move on. Forget. At the very least, I hope that my naïve but well-meaning self helped make their pre-op jitters just a tiny bit better.
Fast forward to the next morning, and we were second in line for the “slice and dice,” as dad liked to call it. He overcompensated with his off-brand humor, which because of his frontal lobe tumor was often uncomfortable and inappropriate. You learn to roll with it. The nurses rarely appreciated it.
Hours later, no food, no water, no rest and we’re still waiting to get him going. Come to find out, the woman whom we had met yesterday, who was first in line that morning, met a fate we’re not quite sure of, but was much more than the no biggie, get it out, move on I’d assured her of. I guess I’m not a neuroscience expert after all.
When Dr. Brainsurgeon finally got his hands on dad, he looked haggard, to say the least. He was a well-weathered, all-grey, worn down doc who looked like he had seen better days, but we trusted him with dad’s brain, even though he looked like he hadn’t eaten or slept at all. Ever. So goes hospital life, I’m guessing.
Word was that dad had escaped another brain tumor, but was so clogged up with scar tissue in the empty cavity from tumor #1, that they had to take out a lot more tissue to get him cleaned up. Tumor or not, anytime you open and touch the brain, you invite deficits that will alter your life forever. No biggie. Get it out. Move on. Forget. But this time he truly never was himself ever again. And the downhill decline began, snowballing into a longer story for another time. One that took us back to that hospital in Arizona and ended years later in Oregon, at a live-in facility for those lost to the haze of dementia, or in our case, a brain and a life decimated by its arduous journey. At least we were done with waiting rooms.
As I caught the train back to the present, my eyes misted up as I told my new friend goodbye, God bless, Merry Christmas, and I hope your test is comfortable today. I prayed there would be no parallels to where I had just been. I hope that tomorrow she wakes to another day with her big family doting over her, just as it should be.
Our lives are filled with waiting rooms. Moments where the kindness of a stranger can leave a lasting impact, or give the tiniest boost of courage to make it over the day’s difficult hump. I remember these women clearly, their faces, their sense of worry thinly-veiled in small talk, and the silent, humble ask for a moment of shared kinship. I needed it too, and in that moment this morning, when the train in my head could have headed out to the next station dubbed Anxiety & Panic, a smoky, weathered, kind Georgia woman painted me a picture of her life, however imperfect, that made me appreciate our shared humanity.
Smile at someone today, even if you’re wearing your mask. Make eye contact. Listen to the chatty old person. Wave at the car that stopped to let you cross the street. Celebrate the tiny, sharable moments. We're all in a waiting room of sorts, and perhaps it's the kindness of strangers that can turn around a moment, a day, an entire experience. Be that moment for someone.
Darcy Castro is a speaker, content creator and advocate for children of parents with a brain tumor. She is the founder and leader of Darcy Castro Productions LLC, the Empowerment Academy and the Kindred Heart Foundation.Cultivating Respect with Darcy Castrois an initiative focused on practical ways to create respectful environments in our own little pockets of the world. The articles, podcasts and videos feature honest, thought-provoking ideas that aim to inspire and foster positive, respectful communities. Follow Cultivating Respect at DarcyCastro.com.