Statements like, “the freedom of the press is so important we protect it in the constitution, but when wannabe journalists like Mr. Stein abuse their platforms to write stupid articles..” and words such as, “insulting, vile, and inappropriate” blazed across the Internet after “Nut Allergies – A Yuppie Invention” , authored by Joel Stein, was published in the Los Angeles Times on January 9th, 2009. The wrath of the food allergy community was unleashed. I pictured angry moms carrying torches and pitch forks descending on Mr. (Franken) Stein.
There were Op Eds from esteemed allergists, including Dr. Robert Wood, blog posts and even a Rabbi talking about karma, an old Yiddish word. Everyone had something to say and well, it wasn’t pretty. Some even wished food allergies on Joel’s unborn child!
Then on what I call Schadenfreude Friday (okay, it may not have been Friday), the unexpected occurred: Joel found himself sitting up at three am as a convert. His toddler had just experienced an allergic reaction after his first taste of blended mixed nuts that included a visit to the ER. Thankfully, Laszlo survived. Overnight the Stein family became a full time EpiPen®-carrying, label-reading, snack-scrutinizing family. Joel explained in, “A Nut Allergic Allergy Skeptic Learns the Hard Way”, published on August 14th, 2010 in Time Magazine, “At the end of our appointment with the allergist and immunologist Dr. Rita Kachru, I told her about my column. And then hid behind my 1-year-old”. His zero-tolerance stance on nut allergies disintegrated as he shared with the world that indeed, his son developed life threatening food allergies.
Sans pitch fork, I interviewed Joel to see how things were going, in the land of food allergies. I wondered, was his son healthy, did the Stein’s embrace the disease or were they floating around in denial? Did they really become believers? Really, really, really?
“I was very wrong. I’ve been wrong so many times”.
Joel explained that his article, “Nut Allergies- A Yuppie invention” is up there in his “top 10 of articles that have pissed people off”. (Someday I’d like to know what the other nine are.) Joel knew he was supposed to do his homework. “Our job as a journalist is to be educated….” Instead he had punted. Plain and simple.
As a result, friends were lost. “My friend JJ’s sister still won’t talk to me”.
He acknowledged that he had hurt people with his words. He made his bed, and then took a nap in it.
“That first night when it happened, it was horrible, and it shook my wife quite a bit. I felt like this was one in a series of things you worry about when you have a very young child, only this is obviously one I never thought could happen to us.” As we all know, life changes after diagnosis and the Steins were no different. “At school there was a party and muffins with walnuts were passed out. An email had been sent about nut allergies to teachers, but it didn’t make it to the other parents… it was totally random that my wife was there, thankfully.” Joel explained, his wife had successfully intercepted the muffin.
Pondering recent studies about family stress and food allergies, I asked if he felt moms were more anxious than dads about them.
Joel reasoned, “it’s very, very different being there instead of hearing the story secondhand.” He recounted the muffin incident, “HE ALMOST ATE THE MUFFIN!” exclaimed his wife (I envisioned her wiping sweat from her forehead after she leaped through the air for the full body muffin interception), while his feeling was, “Oh good, he didn’t eat it”. These are very different responses, Joel was happy a disaster was averted while his wife probably popped a gray hair, which is entirely consistent with the recent survey published by a team from Northwestern.
Volunteering during lunch at his son’s school has brought him a deeper understanding of how food works in a school. He thinks this might be why women feel more anxiety than men; stay-at-home dads are still in the minority, if you look at roles in the traditional sense. “It’s really stupid that we can’t learn from other people’s stories,” Joel asserted as we talked about food allergy life.
“It’s hard, it’s complicated. There is a wide range of what an allergy is”. He detailed how his son has high egg “scores,” yet he eats cooked egg regularly. “Blood work, scratch tests aren’t accurate in a binary sense: is he allergic or not?” This degree of nuance is not bad for someone who has only been thinking about it for a couple of years; I’m going to take the risk of saying that I believe Joel might be a closet science junkie as we discussed epigenetics and Dr. Nadeau’s work at Stanford.
Joel pointed out that food allergies are, “One of the few medical conditions that inconvenience others, you’re asking a lot of people, you’re not just asking them to be aware of breast cancer”. I thought about this statement long after our chat. I couldn’t think of any other health issue that affects everyone in the room on some level. Maybe secondhand smoking.
Discussing the “eye rolling” sometimes seen in our community, Joel shared that he hadn’t experienced it….yet–and it must be frightening for a writer who famously rolled his eyes in the pages of a prominent newspaper. “Ninety percent of resistance from others is contained in the way people convey two messages: ‘you’re inconveniencing me’ and ‘I don’t believe human evolution works this way (extremely fast)”. The rapid growth of this disease simply boggles the general public.
Curious if he felt vulnerable, I asked. “Just by living we are vulnerable,” he said. I also probed about how he felt when dining out (my personal vulnerable sweet spot) only to discover he has worked quite a bit in restaurants from “low to high end”. Joel said this is an advantage when he speaks to waiters in a certain way, “I am nice and very CLEAR to get the right message to the kitchen. The kitchen takes it very seriously, waiters can screw things up, you are vulnerable”. He did mention that asking and having these conversations with staff does make him feel more in control.
For an unsuspecting Joel Stein, the journey into the world of living with life threatening food allergies and knowledge began on January 9th, 2009 when he published an opinion on something he knew nothing about. Plato once said, “Opinion is the medium between knowledge and ignorance”. Joel gained knowledge the hard way. So have we all.
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One of the hardest things I find about managing both life threatening food allergies and asthma is talking to others. I hate to be the one that might be perceived as demanding, pushing or for asking too much. What I now know, fourteen years later, is that honest, clear information presented with kindness works!..
Great read Caroline! (Once again)
Thanks Kacey! It was interesting and inspiring to witness a dad’s journey into the land of food allergies.
Thoughtful entertaining postscript to one of the really disturbing events.
Thank you Henry! Thank you for just being Henry actually.
For better or for worse.
Great interview and interviewee!. Interesting, though, that most people don’t think of accommodations for other disabilites, such as wheelchair ramps, as inconveniences, rather basic courtesy or civil rights, something that needs to be achieved with food allergies. (Btw, movie theaters and other businesses have fought some serious legal battles to try to avoid making facilites changes to accommodate handicapped customers, so it’s not universal acceptance..)
I would love to know if Joes has felt welcomed by the food allergy community since he joined it and whether he still gets blowback from the article he wrote!
Libby,
Thanks for joining the conversation. I’ll lay down $$$ that he still gets blowback. Many people were really hurt, and have a hard time moving forward. I was grateful to learn about the share this one food allergy dad’s journey. And a crazy journey this food allergy is!
Thank you for reaching out to him and having this important conversation. A diagnosis of a food allergy changes your family and your world in a second, but changing the outside world is a slow and methodical process. Each day we are making process!
One step forward everyday right?
..and thanks for commenting and joining the conversation!
I know Mr. Stein’s original post did a lot of damage to the credibility of FA parents, everywhere, but he had tapped into a thought that was on the minds of many, and he didn’t invent that kind of thinking. He did something wrong, but I don’t think he is “paying the price”, now, as I don’t consider having a child with a food allergy a “punishment” for past transgressions.
As with all of us, this condition has developed in our children and now Joel is living on the other side of the fence, and is now “in the know”. We can hope that he will continue his writing to raise awareness, as he is now “one of us”. I wish he had not written his piece, but how many have thought the same thoughts, before their FA children were born, with no one the wiser? It’s the child whom we aim to protect, right? Shunning his parents will not serve the child.
Selena,
Well put. We all dedicate ourselves to protecting the children. I truly believe that in our food allergy world, all food allergic children become our children. That slog from food allergy ignorance to knowledge is a tough one. I remembering offering to pluck off a walnut from a co-worker’s cookie to help her out with her food allergy! Or even better: I used to buy my son’s bread in a bakery thinking it was safe? Safer than what? It finally took a 16 year old kid to set me straight. Thanks again for Selena for your hard work in the food allergy community and for your loving support of all people who manage life threatening food allergies.
Thank you for all you do! <3
Selena,
I think that is what I say about you?
You’ve done it again my friend, what a great read! Thank you for taking the time to reach out to Joel. I don’t think anyone realizes how food allergies has a ripple effect throughout every aspect of a person’s life, unless they experience it. Keep up the great work!
Kristin, Thank you for your kind words. That is something we talked about during the interview: why is it that we must experience it to understand it. I even had this conversation yesterday with someone about why is that we can understand some health challenges, but not others? I guess this is what makes being human so interesting. Thanks for joining the conversation!
Very interesting read that really makes you ponder the perspectives of people in different positions and the stance the informed must take. It seems proof is the only support system for many and we carry that burden of proof like torches, which the circumstantially ignorant try to blow out at every turn.
Hi Maya, thanks for sharing your thoughts! So much for the statement that ignorance is bliss?
Good read! I’m thankful that Mr. Stein’s opinion on the topic has changed but sorry that it had to change this way. I would not wish food allergies on anyone.
I wonder if Mr. Stein remembers writing the following. ‘We’re not banning nuts from our house, and we aren’t going to send Laszlo to a nut-free school..’ in his follow up article from his infamous ‘it’s the parents who are nutty’ original food allergy article. http://content.time.com/time/magazine/article/0,9171,2007417,00.html
His child had only been recently diagnosed but he already knew he wasn’t banning nuts from his house or sending his child to a nut-free school.. Hopefully that has worked out but it wouldn’t work for all nut-allergic kids and that doesn’t make their parents crazy. As he said in the interview above, it is about individual sensitivity level. Some food allergic people can be around their allergens safely and some can’t. I felt turned off by his proclaiming these things without knowing what he was really dealing with and without knowing that not all food allergic people have equal threshold levels that can cause anaphylaxis.
I wish him all the best and a reaction-free future. I hope he will be an advocate for the food allergic community. I’m sure his initial article caused many to have a harder time getting safe accommodations for school and other places so if he is able to make positive change and reach people that would be wonderful.
Thanks for commenting Beth! He did mention during the interview that the nuts are placed up high on a shelf (a gift) basically collecting dust and that he was going to dump them. I really believe his comment about food allergies being one of the few diseases that inconvenience people really has given more food for thought too. Thanks for your supportive words to all!
Nice read Caroline. I am very sorry his son was diagnosed and remember the story once he’d found out it affected his child after his controversial original story. I must say it’s not often I remember a reporters name as well as I do his but it’s because that story was extremely hard to swallow. I am glad he sees things differently; however, I’m sorry it had to be because if his son. I’m happy he is willing to share with us and wish his family well,
Thanks Aleasa for adding to our discussion. Life lessons come in many packages and I was inspired by Joel’s willingness to share his journey and story. It’s good to watch men participate and understand their child’s health issues and then embrace them.
Thank you for your article. What a rude awakening for Mr. Stein. People still don’t realize the dangers. I wouldn’t wish my food allergy on anyone. I don’t like the dangers of eating out. Lately, I’ve had to rule another restaurant off my list, Applebee’s. Although, the waiter and manager tried to find what on lunch menu was soy free (according to their “book”), I had a reaction. The rest of the night, I was later in what I call a “soy induced coma”, with the help of a dye free liquid antihistamine, to calm the soy affects.
Another health issue that affects many like myself and those that tend to have food allergies is fragrance allergies. It is difficult to eat a meal searching for the last bit of uncontaminated oxygen in the air. As the waiter, bus boy, manager and other patrons slather up I can only hope they think about the people they are serving or sitting near eventually realize this can virtually make a good meal inedible.
Hi Janet,
Darn on Applebees. I think soy is a very hard allergy to manage. It seems that soy is in everything! I understand about the fragrance. I have asthma and I enter my local department store from the men’s section and avoid that entire half of the store. It’s so much harder to avoid people wearing fragrances. It’s not easy mananging allergies! Thank goodness there is a wonderful community out there.
Caroline, thank you for this interview. Many of us FA parents have been distressed about how our children’s “disability” is talked about so carelessly in the media, and recently too….Joel Stein’s original article. Awful. I just wish it didn’t take his child having an allergy for him to sit up and listen. Because if that’s the case, then the children of many writers are going to have to have to develop a Food allergy for the news to get out that Food Allergy is not made up. It’s serious. We need understanding and accommodations because we have to have them, not because we want to whine and get special treatment for our children. And, Jokes are not welcome. Anyway, I appreciate his words in your interview and hope he can right his wrong, by publishing another very widely distributed article about the importance of understanding Food Allergies, to make up for his lack of judgement a few years ago.
Hi Robin, thank you for chiming in. Years ago when My son was diagnosis, 14 years to be exact, I thought we had a big mountain to climb. Now, it feels like the mountain keeps growing! We certainly have our work cut out.
Great article Caroline!! I can’t imagine how terrifying it must be to live with these allergies!! Such a great point too, how no other diseases really affect anyone else. I had never thought of that! Your blog is awesome! Thank you for your hard work and dedication!!
Michon,
Thanks for joining the conversation! Joel brought up a good point that you mentioned. This disease reaches out effects everyone, whether they are prepared or not! There is an important challenge.
Awesome interview Caroline. I’ve read Joel Stein in TIME but had NO IDEA he wrote that piece in 2009! What an interesting conversation this interview must have been. Thanks for doing this so eloquently.
Hi Chris, I follow him too and just kept wondering if they were okay, how was life etc. Thanks for commenting!