In my caregiving experience, the patient is an absolute superhero and the caregiver generally gets relegated to something more along the lines of an afterthought.
This is particularly true with something like cancer, which is always talked about in terms of a “battle.” Patients are “fighters,” who are “winning” or “losing,” who are “survivors,” etc.
As a caregiver, you hear over and over how strong your loved one is, how he’s a hero, how he’s amazing. This comes from family, from friends, from doctors. If your patient is like mine, then literally everyone around you acknowledges his struggle and his response to it.
Meanwhile you’re giving absolutely everything you have, often to your own detriment, and you get nary a peep beyond perhaps “you’re so strong,” which is problematic too.
Been there, done that. Lord have I heard the hero line. Over and over. Ad nauseum. Because if cancer patients are heroes, my husband is a freaking Avenger.
Not only is he fighting a malignant cancer in a form never seen before. Already this puts him in the realm of otherworldly. But it’s also how he responds to diagnoses, treatments and surgeries that make him a warrior of absolute mythic proportions.
Antonio is the most determined person I’ve ever known. (Ditto the most zen, live-in-the-moment person I’ve ever known but that’s a separate discussion.) His first and foremost reaction to his diagnoses has been, “I want to get better,” and then he focuses all of his energy to that.
He does what he has to do to get back to where he was—from surgery to walking to returning to work to running 9 miles a day. And on top of that, his goal isn’t just to get better for himself, but to return to being able to support us, his family, in the ways that he’s used to as well.
He’s the patient that, hours after surgery, wants to get up and start doing laps around the hospital ward. Once home, he turns those laps into walks around the neighborhood. No joke, he was walking 5 miles a day by the end of his first week post-surgery at one point.
He’s the patient that returns to work as soon as he can, and then pushes himself to start cooking dinners when he comes home after work, despite his pain, despite his exhaustion, because he wants to help me as much as he can.
Our friends and family joke that most people don’t push themselves to his level when they are 100% healthy, much less going through cancer and treatments, dubbing him “Super MAntonio” (original art by Dave Ryan) in recognition of just how truly phenomenal he is.
So yes, I’ve witnessed for myself how amazing he is and I’ve also heard it from every single person who knows his story.
This includes our kids. Recently I asked them, “What do you think of when you think of Mama?” Their answer: Snuggles (awesome, I’ll take it) and work meetings (fuck).
And then unprompted, they launched into “But if you ask us that about Papa, he’s so strong, so determined, he always keeps pushing forward, he doesn’t give up, he’s our hero, we want to be like him,” and on and on for about 10 minutes straight. So while I like to be known for all the snuggles, I’m not going to lie—that shit hurt.
And here’s the thing: I don’t disagree with anyone. He’s ridiculously amazing. I love this about him and wouldn’t trade it or diminish it for a second.
But if we’re being completely honest here, I want some credit too.
Because while he’s out on his walks and focused on his recovery at any given time, I’m making the space for him to do so by managing absolutely everything else: Making sure we have food in the house and somewhat nutritious dinners, or organizing the drop offs of food that lovely people are providing us and ensuring they don’t include eggplant or “weird” vegetables that the family wouldn’t eat; serving as the emotional support and constant presence for our kids; managing bills and insurance and all the paperwork for work leaves and disability claims; keeping on top on all things school-related, from homework to permission slips to field trip money to drop offs and pick ups; feeding and walking our dog; ensuring nothing slips through the cracks, whether that’s the lawn mowing or oil changes or license renewals or dental appointments or all the detritus of life that normal adulting requires.
All while working full-time.
All while supporting him—at appointments and through at-home care.
I want to believe there’s heroism in that too. But I can’t get past the feeling that wanting that feels cheap and needy. For fuck’s sake, I’m not the one going through cancer.
So, am I a hero or not? Let’s examine.
Pingback: Caregivers: You are TOTALLY the heroes - Caring Through Cancer