“How are you?” – a year and a half later

I hadn’t seen Miriam in months, but she’s been following my cancer and health columns here and online. My wife, Jody, and I bumped into her at a lecture a few weeks ago.

She spotted Jody in the crowd first. “How’s it going?” she said, casually, before turning to me. I saw the corners of her mouth drop a bit and her brow furrow as she sought the right words. 

“How ARE you?” she said, after an awkward beat, putting the emphasis on the second word, which was drawn out in a way meant to signal compassion.

If Miriam wasn’t entirely comfortable with what to say, the truth is, neither was I. These days, how to respond is not as clear-cut as it was a year and a half ago when I was first grappling with my diagnosis and had a practiced, if pat answer.

Back then, I was “the cancer guy.” That was my public persona and I embraced the opportunity to educate, to console, perchance to inspire. But today I’m not sure I’m still looking for such notoriety. 

“You know, when you open up about this in the newspaper, that’s going to become part of your identity forever,” Jody said to me when I was first deciding whether to write about my health. “Are you sure that’s what you want?”

“What other option do I have?” I responded, convincing myself that taking the plunge was inevitable. “My life online is already an open book. My religious beliefs, my political convictions, even our love life.”

As much as I might feel the urge to bury the past year and a half and move on, posting pictures of mountain hikes not Hadassah Hospital waiting rooms, that’s not really honest either. Mine is a chronic cancer which, like so many other protracted pains and illnesses, has no cure and is guaranteed to return, whether that’s in 6 months, 5 years or longer.

So yeah, I’m still the cancer guy, whether I like it or not. As a result, when someone like Miriam asks me how I am, the answer is complex. 

Do I launch into a novel-length narrative of my latest aches and pains? Should I revert back to the succinct “fine, thank you” quickie of my pre-cancer days? That wouldn’t be untrue – right now, at this moment, I am mostly fine. What I’ll be in another month, I can’t know.

When I was in the thick of my first round of treatment, I had what seemed like an authentic rejoinder: “I’m up and down, depending on the hour. This is a [fill in the blank] hour.” 

Is that still an appropriate response?

This is not a question I have to grapple with alone. Chronic illness and pain affect nearly 50 percent of the U.S. population, each of whom must decide how to answer their own “how ARE you?” questions while living with an often-invisible illness where symptoms are not obvious to the casual observer. By 2025, a projected 164 million Americans will be chronically ill. 

“One of the punitive effects of pain is that it is unsharable,” writes Karen Duffy in her book Backbone: Living with Chronic Pain Without Turning into One. “Pain is subjective. It is unknowable unless you are afflicted with it.” 

When you live with chronic illness, chronic pain or chronic cancer, you have to get comfortable with being uncomfortable.

Joy Selak and Steven Oberman write in their book You Don’t Look Sick! Living Well with Chronic Invisible Illness that there are five stages of this kind of disease: 1) getting sick, 2) being sick, 3) grief (for the loss of the person you once were), 4) acceptance (of who you are today) and 5) living well with the illness.

I breezed through steps 1 and 2, I’m actively dealing with step 3, but I seem to have gotten stuck on step 4 – acceptance. 

Ilana Jacqueline has some wise words on that topic in her book Surviving and Thriving with an Invisible Chronic Illness. 

“Acceptance isn’t about making you weak from the battle of fighting your disease,” she writes. “It’s about building a smart and capable foundation from which a relapse can’t knock you down.”

“Accepting being ill with an invisible chronic illness means knowing yourself, knowing when to rest and when to work, when to play and when to watch, when to exert energy and when to conserve it,” add Paul Donoghue and Mary Siegel in Sick and Tired of Being Sick and Tired.

To that I’d add knowing how to respond.

When I was first diagnosed, I wrote an article in which I quoted Letty Cottin Pogrebin. The founder of Ms. Magazine described in her book How to be a Friend to a Friend Who’s Sick why the “how are you question” becomes a loaded one for someone who’s ill, as they now have to “decide on the spot, questioner by questioner, friend by friend, situation by situation, how candidly to respond.”

Over the course of the last year and a half, I’ve replied in different ways at different points in my treatment. Yet, the question remains: How do I want to be addressed now?

Here’s my new bottom line: Just ask me “How are you?” No added emphasis, no furrowed brow. I don’t want you to forget what I’ve been through – if I know you know my backstory, I may choose to give you a little extra detail. Or I may just politely demure. 

If you’re listening carefully, that can be just as telling.

I first wrote about what to say 18 months later in The Jerusalem Post.

Tagged as: Cancer, chronic illness, Ilana Jacqueline, Joy Selak, Letty Cottin Pegrebin, Steven Oberman