Going Gluten-FreeJuly 25, 2012

Remembering Living Without Contributor Marina Keegan

The world, particularly the celiac world, lost a rising star several weeks ago when Marina Keegan died in a car accident in Massachusetts. Marina, 22, had just graduated from Yale University days before. A talented journalist and playwright, Marina had planned to begin working at The New Yorker magazine this summer.

Marina had a strong sense of social justice and community service. According to news reports, she was one of the organizers behind a protest that questioned campus recruiting policies, the so-called “brain drain” of Ivy League grads who wind up in finance in response to aggressive luring by the financial service industry. (Click here for the article she wrote on the topic for NYTimes.com.)

Marina was a life-long celiac. Food editor Beth Hillson knew Marina when she was first diagnosed as a toddler, when Marina’s mother Tracy was running a children’s celiac group in Boston. Design director Oksana Charla worked with Marina's mother as we assembled an article about food banks and special diets for our October/November 2011 issue. (The Keegan family, specifically Marina's younger brother Pierce, is behind Pierce's Pantry, a gluten-free food bank in Wayland, Massachuetts.) I met Marina over the phone and via e-mail last year when she was a senior at Yale University. She submitted an essay to Living Without  about college kids with celiac disease who regularly cheat on the gluten-free diet. Way too often, newbie celiacs don’t “get it,” she said. She was worried about their careless, cavalier attitude toward their health. Her essay was published in our Dec/Jan 2012 issue.

"I had celiac disease before it was cool. Before 'gluten free' was stamped on muffin boxes sold at Whole Foods and local cafes. I’m a lifer. I’m a pro. I’ve been doing my damnedest to avoid the tiny protein since I was 18 months old.

"Not so for most of my celiac peers. The friends I meet in college are new to the club. They’re coming off fresh diagnoses and newly prescribed gluten-free diets. So I teach them about cross contamination and the nuances of artificial colors, the importance of certified oats and the dangers of sushi rice. And for 29 days a month, they try really hard. But on day 30, they have a slice of pizza because it’s their birthday or a beer because they turn 21 or a piece of fried dough because, after all, they’re only at the fair once a year and besides, they’ve been so good this month. They don’t get it."

In her essay, Marina wrote a message for the celiac community. It was a basic one, filled with concern, support and hope. It resonates still.

"Celiacs need to understand that the disease has far greater consequences than an unsettled stomach. The fact is that failing to stringently adhere to a gluten-free diet destroys intestinal villi and leads to things like osteoporosis, other autoimmune diseases and cancer. These greater consequences need to be articulated to every newly diagnosed person. The same thing goes for the risks to one’s fertility. Celiacs should be told that a piece of cake every month might cost them the ability to have children. I try to explain this to my peers when I see them cheat, but it needs to come from a doctor.

"I hope the medical community can focus as much time and money on stressing strict dietary compliance as they do educating food providers, manufacturers and servers. Only then will all the heightened community awareness and accommodation truly have an impact."

The world has lost an articulate and passionate young woman who certainly would have been a champion for the celiac community had she lived. We are heart-broken. On behalf of the Living Without team, our thoughts and prayers go out to Marina’s parents, to the rest of her family and to her many friends. We’re very grateful that we had the opportunity to work with her.

To read the entire text of Marina’s Living Without essay, “Cheating in College,” click here.

For a news report about Marina Keegan, click here or visit http://www.nytimes.com/2012/05/30/business/marina-keegan-journalist-and-playwright-dies-at-22.html.

 

Comments (2)

A very sad day indeed to lose such an articulate and passionate young woman. I, too was diagnosed with Celiac long before it was popular... 1951 to be precise! I have spent a lifetime explaining Celiac and gluten intolerance. I am going to be 62 in August and have lived with Celiac for all of my life. I, too was in a car accident the very same week as Marina... in that I rolled my brand new Jeep and wrote it off in a flash tornado just blocks from my home. I survived with some brain damage, a broken nose, black eyes, concussion, fractured ribs... bashed and bruised, but fortunately still here. Marina will be missed. We need to continue her dedication and commitment to sharing and informing.

Posted by: Marilyn J | July 26, 2012 2:46 PM    Report this comment

Thank you for your post. This is such a tragic loss on many levels. Marina was such an inspiration to my family and me, I'd like to send her parents a letter. Do you have any contact information available? Mine is Mark Sabel, mksabel@mindspring.com. thank you,

Mark

Posted by: mark s | July 26, 2012 2:19 PM    Report this comment

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