“Can we pull over to the side of the road?”
It was less a question than a need. My colostomy pouch was filling with both excrement and air (wind, as the Brits call it) and I needed to let the air out before the pressure ripped the seal open and our rental car became a biohazard on wheels.
Pulling over was a dangerous maneuver. We were on Interstate 195 toward Thurgood Marshall Baltimore-Washington International Airport. Traffic was heavy. Bo stopped the car on a wide shoulder and I got out, unzipped my shorts and let the air out of the pouch. Crisis averted for the moment, or at least until I could pull the used pouch off and replace it with a fresh one.
The near catastrophe changed my mood. We (Bo, Kate and I) had been celebrating a successful media event at a Baltimore school where we surprised a teacher with the news that she won $25,000 to transform her classroom with new technology. The event got great media coverage and served as the beginning of a great relationship with my company, our government agency customer and the school.
All of that was gone. A near-incontinence experience will do that.
I’ve been a cancer survivor for more than nine years and I’ve lived with lots of monickers that equate me with superhuman skills. Despite the limitations cancer has put on my body, the colostomy bag being just the first in a growing list, I’m the poster boy for survival, resilience and cancer advocacy.
And yet …
I haven’t wanted to admit to myself or anyone else that I’m tired. Exhausted, even.
The truth is, most days I don’t feel like a superhero. A four-mile walk with a friend is only successful if I don’t fall from not being able to feel the ground or if I don’t shit myself. Same with a workout at the gym, a swim in the pool, a day at the office, a ride in the car, etc.
I will play the tale of the colostomy failure for laughs later, but in the moment my brain is a swirl of emotions from grief over what my body would be like without the ostomy and not having gone through cancer, frustration for my day being disrupted by something I can’t control, and anger that I’m in the position of having to clean myself up at all.
In my mind, I am always less than people tell me they see or know. And, there is an odd repetition of a set of what I’ve called the cancer survivor commandments.
- Thou shalt not talk about anything less that straightening thy superhero cape and pressing on, ever forward.
- Thou shalt not talk about survivor guilt, nor the constant niggling in the back of thy brain that cancer will come back, nor that thou really, really, really hates having a colostomy.
- Neither shalt thou complain about colostomy failures.
- Thou shalt be “on” at all times.
- Thy facial expression, tone and body language shalt portray nothing less than joy and gratitude.
- Thou shalt emit perpetual sunshine from thine sewn-shut butthole.
Exhausting. So very exhausting.
“I thought I was something, but I might be nothing at all,” writes Kate Bowler in her forthcoming book, No Cure For Being Human (And Other Truths I Need to Hear). In her book, which is set to be published in late September, Kate (I’ve never met her but we’re definitely friends), wrestles through her diagnosis and treatment with Stage 4 colon cancer, and all of the fallout that comes from a diagnosis. No Cure is beautifully written and resonated with me on a soul level.
In her book, I sensed Kate giving me permission to jump off the pedestal that, I fully admit, I helped build. Joy and gratitude are real emotions, but so are doubt, anger, fear and so many others.
I also know I’m not alone in feeling this way. While in Richmond on business last week, I got the chance to meet a new friend named Adrian Manning, a retired firefighter and fellow stage 3 rectal cancer survivor. Adrian and I are members of Man Up To Cancer — The Howling Place, a Facebook group designed to help men who have faced cancer connect with each other.
Over the course of breakfast, Adrian and I swapped experiences from our treatment regimens, adult-diaper-wearing-and-other-things-they-don’t-tell-you-during-treatment lessons, and mutual shit storms. We met as strangers and became brothers. Adrian is also the first person I’ve talked to in a long time with whom I didn’t feel that need to be “on.” He got me from the jump.
Kate writes: “‘I’m not special,’ I stammer as I try to explain this to my friends. ‘No, I mean, I am special to the people who love me. Thank you. I just don’t believe I’m … terribly valuable. Does that make sense?’ I make people feel uncomfortable by saying it, so I stop.”
“I have walked this hard thought to the end of the line. I am probably replaceable.”
Like Kate, I’m probably making you, dear reader, uncomfortable, too. I don’t know how to fix that, nor do I know how to wrap up this post.
Know this, though: on some of the days you see me being strong, courageous and resilient, on the inside I’m not any of those things.
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