‘You look good,” our friend Ronit said when the three of us – my wife, Jody, included – went out to dinner the week before last.
I shrugged my shoulders before mouthing a mostly unconvincing “Thank you.”
I should be more appreciative, I know. It’s just that I’ve heard this line so many times in the months since I’ve been coping with the realities of having chronic cancer.
Yes, I may look good on the surface level – my skin tone is decent, my hair hasn’t fallen out and I’ve gained back the weight I lost at the beginning of the process – but inside, I don’t always feel so fabulous.
Every day I still have pain and discomfort. It’s not from the cancer itself – that’s gone for now. It’s more likely a byproduct of months of intensive chemo that’s resulted in fatigue, joint pains, bone aches and light-headedness.
But you don’t see any of that. From the outside, I look like my old healthy self and, for the most part, I keep quiet. It’s a fine line when you suffer from chronic cancer.
To tell you how I really feel risks turning me into one of those eternal kvetchers, the kind you listen to empathetically at first, but then take conscious steps to avoid the next time you meet at a party or event. But if I smile and say “It’s all good, man,” I feel like I’m not being real.
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“You have such a great attitude,” Ronit continues as we’re served our first course.
I do? Why? I wonder. Is it because I’ve confounded her expectations of what someone with cancer looks and acts like? Did she have a perception – taken from personal experience or from the media – of what “sick” means and so anything less than that is perceived as a triumph?
“How are you doing?” a friend asks on the phone when I’m out with the dog the next day.
“I’m walking,” I say, simply.
[good job],” comes the enthusiastic response – as if the very act of being able to self-ambulate post-cancer is remarkable.
The thing is, I really want to believe Ronit that I do in fact look good. Maybe if my self-perception were more positive, I think to myself, my body would feel better, too.
I’m not saying having a constructive attitude will cure my cancer. Follicular lymphoma never really goes away – it slips into remission for a while, comes back, gets treated and stays quiet for another period. But it might make it easier to get through each day.
“There is this very dangerous mind-set running through our society that people with a visible condition or disability are the only ones who actually have a ‘real’ disability and anyone else can be shoved to the side,” writes Catherine Pugsley, who suffers from osteomyelitis, fibromyalgia and Ehlers-Danos syndrome.
Pugsley doesn’t have cancer, but her experience of the visible vs the invisible when it comes to persistent pain is something people with chronic cancer know all too well.
“Oh, but you don’t look sick,” Pugsley says she hears all the time.
“Are you sure? You look normal to me.”
It can’t be true, because “You’re too young to have anything like that!”
When you look fine on the outside, it can be hard to ask for or accept help when needed.
I have a disabled parking card, for example, but I hardly ever use it. What if someone saw me get out of my car and head down the street seemingly fully able? But if I had to park a half dozen blocks away, that might be hard for me, too, even if you couldn’t tell from the way I look.
“We can’t be strong and stay invisible forever,” writes Pugsley. “Sometimes we have to drop the mask and be human.”
She’s right, but I’m not sure I’m ready just yet. Too much of my identity is tied up in being stoic: the cancer guy with the terrific temperament.
The visible/invisible debate is not a new one in my life. My father had polio when he was a teenager. He was in the hospital for a year but survived and for many decades later looked entirely normal except for a slight limp. It wasn’t easy for him, but he was so proud of (mostly) being able to ignore his limitations.
I never imagined I’d be like him in that way, but here I am.
“You will get better,” Ronit reassures me over dinner. “I’m sure of it.” I’m less sure but I just nod, determined to play my role.
Then Ronit says something surprising.
“You look handsome, too.”
I turn to Jody to gauge her reaction. I’m pretty sure Ronit’s not coming on to me – not in front of her good friend, my wife. But she’s playing to my vanity and the compliment works.
For the first time, I’m left speechless with no curmudgeonly comeback arising in my internal monologue. Maybe I just needed someone to ramp up the acclamation before I could truly internalize it.
I blush and utter a meek “Thank you,” but this time I mean it.
We say our goodnights and Jody and I walk home together. I feel a surprising spring in my step. I look good, I have a great attitude, I’m going to get better and I’m handsome.
For a moment, I actually believe it all.The writer’s book,
Totaled: The Billion- Dollar Crash of the Startup that Took on Big Auto, Big Oil and the World, is available on Amazon and other online booksellers.
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