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.

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A few weekends ago, my wife, Jody, and I ate out in a kosher restaurant open on Shabbat. In Jerusalem of all places. 

Hadir Shabbat spread (credit: OFAIMME)

That’s a remarkable culinary change in a city famous for mostly shutting down at sunset on Friday. 

The story started when all three of our children announced they would be away for the weekend and we didn’t feel like cooking. 

Instead we opted to check out Hadir, the bar/restaurant at the Hansen House, a former leper’s colony that’s been transformed in recent years into a center for the creative arts.

Hadir is part of a trend – albeit a small and still very experimental one – of trying to establish shared spaces for secular and religious residents of Israel’s capital to come together and eat a Shabbat meal out of the house – without breaking the religiously-proscribed laws of the day.

Hadir prepares its dairy Shabbat fare in advance and heats it on a hot plate. Hot water is kept in an urn that stays on all Shabbat. The menu is simple: challah and dips, various cheeses and salads and a few baked burekas-like dishes. 

Unfortunately, Hadir was inexplicably out of the two classic Shabbat dishes that appealed the most to us: hamin (or cholent) and kugel.

At Bab al-Yemen, a second kosher and open-on-Shabbat restaurant in Jerusalem on Gaza Street in Rehavia, hamin and kugel take center stage – with a Middle Eastern twist. The restaurant’s name means “Gate to Yemen” in Arabic and it serves traditional Yemenite Shabbat meals.

Dessert at Bab al-Yemen

Owner Jonathan Vadai sees his restaurant serving as a gate to social change in the Jewish community. “Our connection to Judaism needs to be more flexible and open in this era,” Vadai told The Jerusalem Post. “The Jewish mind-set says there is a solution within Jewish law for everything, if you have the courage to look forward. We can keep kosher and not violate Shabbat – do everything by the books …offering the atmosphere and service that religious customers require.” 

At both restaurants you can pay in advance or afterwards on the honor system – you ring them up on Saturday night and give your credit card over the phone. Vadai says that 95% of customers pay on time.

Kosher, open-on-Shabbat restaurants are not a new phenomenon: every big hotel in Israel has one and they subscribe to the same hotplates and no cooking rules. But Hadir and Bab al-Yemen are the first fledgling attempts to take the concept to a regular restaurant in Jerusalem, one aimed at locals and that doesn’t cost an arm and a leg for a buffet suited for a King (David).

Hadir is set in a funky only-in-Jerusalem location: the old leper colony’s former animal pen, now neatly renovated to house a narrow indoor seating area with a large outdoor section for al fresco dining. 

With no hamin or kugel at Hadir when we arrived, Jody opted for a salad and an anti-pasta plate, while I had a “Jerusalem bagel” (the oval-shaped kind you can buy in the Old City) served up with lebaneh, salmon, tomatoes and pickles. Not exactly the kind of Shabbat meal we have at home, but it filled me up and it was very fresh. 

That’s not surprising: Hadir sources its food from the Offaimme farm on Moshav Idan in the Arava Desert. Offaimme is a family-owned “seed-to-table enterprise” and Hedai and Yinon Offaim, the brothers who run Hadir, view it as “part of a greater vision – an environmental, sustainable and social farm with fair-trade agreements.”

Kosher open-on-Shabbat restaurants are meant for “friends and couples who are ‘mixed,’ where one is religious and one is secular [who can] feel at home sitting together,” Vadai told the Post.

The message of inclusiveness was working the day we visited Hadir. At the most frontward table, there was a group of bareheaded young men and women and one middle-aged man wearing a kippa. 

Before you rush out to patronize these new open-on-Shabbat kosher restaurants, there are a couple of caveats. You have to be a bit flexible to eat at Hadir on Shabbat. There’s music playing in the background (inside the restaurant although not in the outdoor seating area) and many of the patrons were working on their laptops. 

We haven’t eaten at Bab al-Yemen on Shabbat yet, but Vadai says that employees at his restaurant refrain from using computers and screens. Bab al-Yemen asks that you email them in advance to reserve a place (presumably so they can be sure not to run out of kugel and cholent).

Neither restaurant has a kashrut certificate. The Israeli rabbinate refuses to give certification to restaurants that are open on Shabbat, although they readily do so for those in hotels, something Vadai says he will fight – all the way to the Supreme Court, if necessary. 

Kosher on Shabbat dining out is not entirely unprecedented in Israel. The popular Dag al HaDan restaurant near Kyriat Shemona in the Upper Galilee has a kashrut license for its weekday operations and maintains a second kitchen without supervision to be able to operate on Shabbat.

Not having a kashrut license is fine with me. It’s always irked me that keeping Shabbat is considered a prerequisite for keeping kosher. 

Moreover, supporting innovations like these is an important and enjoyable way to ensure that Jerusalem remains pluralistic in deed not just in words. In that respect, eating out on Shabbat is a mitzvah!

I first wrote about eating out on Shabbat in The Jerusalem Post.

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Bubbles of happiness

by Brian on August 18, 2019

in Cancer,Health,In the News

Binging Nora McInerny can be a serious bummer. McInerny is the host of the morbid yet utterly compelling podcast “Terrible, Thanks for Asking.” 

Nora McInerny, host of “Terrible, Thanks for Asking”

McInerny lost her husband to brain cancer when he was just 35. McInerny’s father died and she suffered a miscarriage all within a few weeks of her husband’s passing. She wrote a memoir about her experience called It’s Okay to Laugh (Crying is Cool Too)

McInerny’s podcast – which my wife, Jody, and I consumed for hours straight on a recent road trip – alternates between the host vividly exploring her own grief and interviews she conducts with other people going through similarly trying times. 

McInerny isn’t the only pain podcaster. “Everything Happens” is a program hosted by Kate Bowler who was diagnosed with Stage IV incurable colon cancer in her mid-30s.

Bowler is a professor at Duke Divinity School who previously wrote a book about the American Prosperity Gospel, a Christian creed that sees fortune as a blessing for those who believe. In her podcast, Bowler explores what it means to be dying in a community that insists everything happens for a reason – and what it’s like when she finds herself bereft of that certainty.

Grief podcasts are becoming a thing these days. There’s Jordan Ferber’s “Where’s My Grief?” Julia Samuels’s “Grief Works,” and “The Art of Dying Well” from St. Mary’s University in London.

All of these podcasts force listeners to grapple with the realization that life doesn’t always turn out to be as bright and shiny as they expected when they were younger. Faced with this gritty reality, how is it we still find joy in our lives? What exactly is happiness (and how can we achieve it when our bodies conspire to push us in the opposite direction)?

Long before I was diagnosed with my own chronic incurable cancer, I’d suffered from bouts of depression, anxiety and insomnia. (You would have thought all that was enough for one body, but you know, cancer.) Through trial and error, I hoped my psychiatrist and I would stumble upon the right cocktail – a single magic pill – that would lift the fog so I could feel some sort of equanimity for much of the day.

As I grew older, though, and I gained more experience with protracted disquietude, my expectations changed. Rather than seeking 100 percent pleasure all day, all of the time, I’ve become more content with just identifying “bubbles” of happiness. A good meal, stimulating conversation with friends, a trip abroad, passionate sex – bubbles of bliss floating in a boundless sea of dissatisfaction. 

It’s the same with cancer, where there are precious few sure-fire solutions and sustained uncertainty is often the best we can hope for. 

I savor my happiness bubbles. I grasp for them even though I know they must inevitably burst. Which got me thinking: is there a non-chemical way of creating more bubbles – or at least stabilizing them so that they last longer before they’re gone? 

The very pursuit of happiness may be part of the problem. 

Studies show that “people putting the greatest emphasis on being happy reported 50% less frequent positive emotions,” Dr. Todd Kashdan writes in Psychology Today. “Thirty-five percent had less satisfaction about their life and 75% had more depressive symptoms than people who had their priorities elsewhere.”

“Happiness cannot be pursued, it must ensue,” Victor Frankl opined in his post-Holocaust masterwork, Man’s Search for Meaning. “One must have a reason to be happy.”

Dr. Micah Goodman, who founded and directs the Ein Prat Leadership Institute, suggests that this can be best accomplished through fashioning a life of purpose. 

We are happiest, Goodman explains, when we become part of a story that begins before we’re born and that will end, hopefully, long after we’re gone.

That could be as grand as a shared cause – a political passion, caring for the Earth – or as particular as a club or hobby. Religion is an especially effective path to purpose, Goodman says.

Happiness guru and former Harvard University lecturer Tal Ben-Shahar agrees. “Happiness lies at the intersection between pleasure and meaning,” he writes.

I like Goodman’s approach, but I fret he may have overlooked an essential part of human nature. If happiness increases when we’re part of a project that we won’t live to see the end of, then why are so determined to cheat death?

Yuval Noah Harari points out in his book Homo Deusthat in the 21stcentury, “Humans are likely to make a serious bid for immortality.” 

Death is essentially a “technical glitch,” Harari writes. And “every technical problem has a technical solution.” Some experts believe humans may overcome death as early as the year 2100.

Woody Allen would be down for that – even if he won’t be around that long. When asked once if he hoped to live on forever through the silver screen, the director quipped that “I’d rather live on in my apartment.”

Harari ultimately argues the opposite is true. “A large part of our artistic creativity, our political commitment and our religious piety is fueled by the fear of death,” he writes.

As, it seems, is our happiness. 

Internalizing that our time on earth is limited may be a cliché, but it can nevertheless help us derive meaning from the moment; to appreciate happiness when it comes, like transitory bubbles, which necessarily pop like soap but are utterly intoxicating when we open ourselves up enough to acknowledge their fleeting existence. 

Maybe Nora McInerny should do a podcast episode about that.

I first burst my bubbles in The Jerusalem Post.

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Last year, I wrote a column that asked the question: “how do datlashim – the Hebrew acronym for formerly religious Jews – want to raise their children?” The main response I received during the course of my research: “to be just like them”– that is, to also be datlashim.

This poses a dilemma, as to be formerly religious is, by definition, a one-generation, non-transferable identity. 

Or is it? 

It turns out I’ve been looking at the categories of religious and non-religious all wrong. 

Demographers have typically tried to classify Israeli Jews into four main groups: secular, traditional, religious Zionist and ultra-Orthodox. 

That’s out of date, says Shmuel Rosner, the author of the new book Israeli Judaism: A Cultural Revolution.

“Those groups still exist, and they have some importance,” Rosner says, “But it’s more illuminating to look at Israeli society not by dividing it according to religious affiliation, but by a mix of tradition and nationalism.”

The state of Israel, Rosner explains, represents “an unprecedented reality for the Jewish people. Never before was there a civil, secular Jewish state. One would expect that special circumstances such as these would result in a different type of Jewishness.”

In Rosner’s book, which he co-authored with veteran Israeli statistician and pollster Prof. Camil Fuchs, there are still four groups. They’re just very different.

“Israelis” (15% of the Jewish population) are the first group, Rosner writes. They’re nationalists (in the broad sense of the term) who are secular and don’t adhere to much Jewish tradition. 

“Jews” (17%) consist of the ultra-Orthodox who place great emphasis on tradition but are less enthusiastic about national Israeli customs and culture.

“Universalists” (13%) are the farthest left-leaning Israelis. They’re often alienated from both Jewish tradition and other Israelis.

The largest group (a full 55% of the Jewish population) Rosner dubs “Jewsraelis” – those who walk the tightrope balancing tradition and nationality

The Jewsraeli group is not monolithic and includes within it a spectrum of practices and values. On its right flank are the religious Zionists; on the left are secular Israelis who are still engaged in Jewish tradition.

Jewish tradition is hard to avoid in Israel, Rosner points out, which is one reason the Jewsraeli group is so large. Tradition is baked into the symbols and calendar of the state. Yom Kippur is a national day off but clearly comes from Jewish culture. Jewsraelis are connected to Jewish tradition but don’t necessarily feel obligated or limited by religion.

Are you secular but attend a Passover Seder? You’re a Jewsraeli. 

Do you scrupulously observe the commandments but also believe it’s important to serve in the IDF and raise the Israeli flag on Independence Day? You’re a Jewsraeli. 

Do you have a Friday night dinner with family or friends, then retire to the living room to watch a movie? You’re a Jewsraeli. 

Get dressed up for Purim and then go out drinking at raucous party in a Tel Aviv bar? Jewsraeli.

Seen in this light, “datlashim are squarely in the Jewsraeli camp,” Rosner says. “Most datlashim, when they leave religion, become secular yet somewhat traditional.”

Once you define Jewsraelis as the country’s dominant category, it becomes clear that, rather than becoming more and more polarized, Israeli society is actually converging around a consensus, one that blends nationalism and tradition. 

So why does everything feel so fraught these days? “During an election campaign, politicians have to flag the differences to attract voters,” Rosner says. “But if you sat [Prime Minister Benjamin] Netanyahu, Yair Lapid and Naftali Bennet together in a quiet room, you’d find that they agree on almost everything.” After all, they’re Jewsraelis, each in their own ways.

Rosner hit on the idea for his re-categorization while walking his dog in Tel Aviv. 

“I noticed that on Fridays, people bring their dogs [to the park] a bit earlier,” Rosner told The Jerusalem Post. “Everyone in the area is secular. I started asking people why and they explained that they have to walk the dogs and then have Shabbat dinner.”

Eighty percent of the Jewish population in Israel has a Friday night dinner, Rosner notes. “Even if they don’t recite the kiddush, it is still a Jewish thing to do.” In Israel, Jewish customs are a part of life. “It’s something we do without having to think about it.”

Rosner’s research has a personal component. He was raised Orthodox; his wife grew up secular. Defining themselves as Jewsraelis helps make sense of their “mixed marriage.” 

That’s my life, too. Since I began moving away from observance a decade ago, I’ve struggled with where I fit in. I’m no longer religious but I still eagerly attend lectures on Jewish topics. Our home remains kosher, Shabbat and holidays are observed, and I’m in a mixed marriage of my own.

What Rosner helped me understand is that I didn’t leave one category (religious) for another (secular). I simply shifted within the spectrum of the Jewsraeli camp. 

Moreover, the big tent of Jewsraelis is growing. Studies show that up to 50 percent of young Israelis raised in religious Zionist homes eventually become datlashim. In a Jewsraeli context, that’s not something religious parents should fear but rather embrace. 

“National religious families have many children,” Rosner says. “In a sense, they’re like a factory for providing more Jewsraelis to Israeli society.”

Returning to the paradox of what datlashim want for their children, there’s now an answer that makes sense. Their children will indeed be “just like them” – Jewsraelis. And that’s an eminently transferable identity.

I originally wrote about datlashim and Jewsraelis in The Jerusalem Post.

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Flunking out of blood school

by Brian on July 21, 2019

in Cancer

I flunked out of blood school last week. I wasn’t expelled exactly, but my scores dropped significantly enough that I was put on probation and sent for an emergency remedial course.

Blood school is not the kind of place you go on a whim. You first have to receive several “letters of recommendation.” Once you’re in, attendance is mandatory and, like a certain hotel in California, you can never really leave. Even if you go on vacation for a while, you’re required to show up for annual reunions, where the staff checks how well you’re doing and decides if re-enrollment is necessary. 

Back when I was in regular school, I was the kid who always got straight A’s. I was several teachers’ pet. I brought that same sensibility with me to blood school. I peppered the instructors (who for some reason insist we call them “doctors” and “nurses”) with questions showing how much I had prepared and how well I was going to do at my new school.

So, when I received the equivalent of a “D” from blood school, it was a blow to my ego as much as to my body. I had expected to sail through blood school with nary a hiccup.

It’s not like you can cheat in blood school. We all follow the teachers’ assignments assiduously. If you get a poor score, it’s entirely a matter of inner constitution, something you’re born with.

Blood school, of course, is what I like to call the time I’ve been spending at the hematology daycare ward since I was diagnosed with follicular lymphoma last year. The occasion of my recent failure was a sudden drop in my white blood cell count – in particular, a type of cell known as a neutrophil – 10 days after my fifth session of immunotherapy maintenance treatment. 

Nothing like that had happened over the previous four treatments nor during the months of chemotherapy that preceded this phase. That’s why it came as such a shock. 

I was a star pupil, I told anyone who asked. Instead, it turns out, I’m quite ordinary. 

If your blood test scores drop too low, it means your immune system can’t fight off the bacteria all around us, putting you at a higher risk of infection and hospitalization, two situations I desperately want to avoid. There is also the risk that your immune system could remain permanently depressed. 

The protocol in cases like mine is to get a shot of a medication called Neupogen, which prompts your bone marrow to rapidly produce extra white blood cells that can mature into more neutrophils. 

The shot itself didn’t hurt but, afterward, every single bone in my body seemed to ache while the marrow inside was working overtime. It felt like I’d come down with an especially nasty flu. 

Susan, my favorite nurse, cautioned me to avoid crowds for the next few days. That knocked out a dinner we had planned with some friends who were in town, but at that point, I wasn’t in a social mood anyway.

A follow-up blood test showed that the shot worked: my initial scores were out of the danger zone, although it’s too soon to celebrate – it will take another month or two to see if they stay up. 

The whole experience dispelled my illogical belief that my time in blood school would, unlike my peers, somehow be limited in duration.

It’s not all bad. Blood school can even be fun. Only a few courses are compulsory. 

Everyone has to take basic math (“if you need 12 treatments over two years and you’ve done five already, how many more do you have to go?”) and sport (regular exercise can keep you from calling in sick too often). I particularly like the literature class – we read lots of cancer memoirs and books on managing chronic pain. I chose to do my science elective on medical cannabis. 

The social scene at blood school is a lot like any other school. You’re thrown into a room with a group of strangers. At first, you stay quiet and avoid eye contact. When you do connect with someone, the bond forged in blood school is like no other. But there’s competition, too, where you wind up comparing yourself to others and determining who’s the more promising student. Sometimes you get to take an experimental advanced placement class. 

There are blood schools in every major city these days and demand is steadily increasing. My school is a bit run down. Some of the equipment hasn’t been updated since the 1950s and there are never enough pillows. But the staff is uniformly great; they really care about their students, which is what’s most important, after all.

I’m not due for my first furlough from blood school for another year, after which I can look forward to the annual homecoming dance, although it’s not with the other students or even my favorite teachers but with the maintenance team that manages the PET CT machine that looks for tumors. If you’re clear, you’re free to go about your business normally until the next reunion. 

Every so often, you hear about a student who defied the odds and graduated, no longer needing to come back, not even for continuing education courses. 

That’s my hope and the hope of every student in blood school: to receive an actual diploma from a school that’s steadfastly stingy about granting them.

I first wrote about blood school in The Jerusalem Post.

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Sex and religion come together in new podcast

July 7, 2019

Sex and religion are two of my favorite topics. So when I heard about this new podcast, I knew I’d have to write about it. A review.

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Meeting the enemy

July 7, 2019

“Why do you Israelis want to wipe us off the map?” The question wasn’t meant to be provocative. I was, after all, the first Israeli Zahra had ever met.

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Is it all in my head?

June 23, 2019

If you were to have told me a year and a half ago that my chronic stomach pain was all in my head, I would have picked up the nearest stick and shown you what “all in your head” really feels like.

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What I learned from Facebook about God

June 10, 2019

How a Facebook conspiracy theory helped me understand why some people, when confronted with cosmic questions like the Big Bang, say “God made it.”

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Letting go

May 27, 2019

I was the fat kid in elementary school. I worked hard to keep the weight off. Then I got cancer. As my weight ping pongs, can I learn to let go of the “small things?”

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