OyChicago blog

Michelle's high school graduation from Keshet in 2012.

Every now and then, I think about a little girl I was lucky enough to meet when I first started working at JUF News.

At the time, in 2001, Michelle Rappaport was just 5 years old. That afternoon when I visited her family's Buffalo Grove home, a happy little girl jumped off her school bus, bounded through the door, and wrapped a great, big hug around my leg, even though we'd never met.

"The room lights up when she comes in," Michelle's mom, Barrie, told me at the time.

I met Michelle and Barrie as part of a story I was writing about heroic families, whose children were afflicted with Jewish genetic disorders. Michelle suffers from a rare neurological illness called Familial Dysautonomia (FD), an autosomal recessive disorder -- meaning the disease is passed down through two carrier parents -- found almost exclusively in the Ashkenazi Jewish population. The average life span for people with the disorder is 40 years.

For those with FD, like Michelle, the sensory system doesn't do its job properly. If she touches a hot stove, her nerves don't alert her to remove her hand and she could easily burn herself without realizing it. The autonomic system -- which regulates body temperature, blood pressure, and swallowing -- doesn't function properly either. Finally, the "bells and whistles" sign of FD is crying without tears.

That day, when I met the Rappaports, Barrie informed me that she had read two articles about FD when Michelle was a baby, pre-diagnosis. All the symptoms they described matched her daughter's.

It was only then, after Barrie read those articles, that she and her husband were able to diagnose her daughter's illness. "I remember sitting there frozen, thinking this is my child, this is my child," Barrie recalled.

One of those articles, Barrie told me, had appeared in JUF News. It was a lightbulb moment for her -- and for me, too. I realized that our work at JUF was, in some way, helping people like the Rappaports. That realization has motivated me for so many years to do my job better.

Similarly, the staff at the Center for Jewish Genetics, based in Chicago, is making a difference in people's lives every day. The Center seeks to create a healthier, more informed community by educating healthcare professionals, clergy, and-particularly-individuals of Jewish descent about Jewish genetic disorders and hereditary cancers, and about the importance of genetic screening and counseling. In 1999, just a couple years before my visit with Michelle, the Center was launched as a cooperative effort of JUF and the Ann and Robert H. Lurie Children's Hospital of Chicago, as a result of a grant submitted to the Michael Reese Health Trust.

One in 4 Jews is a carrier for a Jewish genetic disorder. While carriers are generally healthy, their children may be at risk for a serious disease. Most Jewish genetic disorders are autosomal recessive, so an individual will develop the disease only if he or she receives the same mutated gene from both parents. Therefore, both parents have to be carriers for the same condition. If they are, they have a 25 percent chance in each pregnancy of having an affected child. 

We in Chicago are lucky to have a genetic center serving our community. The only other cities in the country with Jewish genetic centers are Atlanta, Miami, New York City, Philadelphia, and Phoenix.

One of the programs offered by our Chicago Center educates and screens people in their childbearing years. The Center recommends that anyone of Jewish descent be screened for Jewish genetic disorders. Even if only one partner is Jewish, it's recommended that the couple be tested, because none of these disorders are exclusive to the Jewish population. In fact, even if only one grandparent has Jewish ancestry, the Center advises screening. It's best to screen before conception, when couples can choose from the widest array of reproductive options.

The Center's program features online education and an at-home saliva test (instead of the in-person seminar and blood test in the past), and currently screens for more than 80 genetic disorders. The screening costs no more than $199 per person. In comparison, screening at a hospital costs anywhere from $500 to $3,000 depending on insurance coverage.

Today, all these years later, Michelle still lights up the room. She's now 20 years old, "a true milestone," Barrie told me recently. She said that with the love and support of her family, friends, and a medical team, her daughter has come a long way and weathered many storms, including being sick for months on end.

But in the past two years, life has been much more stable for Michelle, ever since she started a new trial medication. Michelle has attended Keshet -- a partner with the JUF in serving our community, which serves people with special needs -- since the second grade, and currently is enrolled in the Keshet COE-Worker Transition Program, which empowers students with special needs as they exit the formal education system. She also works several jobs, plays baseball, and spends time with her 16-year-old sister, Jessica.

As they seek the best ways to deal with FD, Michelle and her family are facing life's toughest challenges with courage and grace. They are a light and a lesson for the rest of us.

For more information on the Center for Jewish Genetics, call (312) 357-4718, e-mail jewishgeneticsctr@juf.org, or visit www.jewishgenetics.org.

I'll always remember the day I told my parents about my decision to become more observant. I was in Israel with knots in my stomach, unsure of how they'd respond to my decision.

To my luck, it was painless and easy. We talked through how to make it work and it made my life back in Chicago that much easier.

Our 20s are a significant transition on its own, but for religious Jews who either grew up with this lifestyle or chose it later in life, it can be uncomfortable to say the least. For starters, this is - for many - the first time that a job forces us out of our bubble. It requires us to figure out a way to make our practices work with an employer who might not understand why we're running out the door at 2 p.m. in the winter months or why we won't necessarily eat at the same restaurants as the other employees.

These moments also extend into our social circles as well. If you're observant, these are a few of the awkward conversations you're likely to deal with; if you aren't observant but have friends who are, there are also some tips on how you can support them.

1. The shomer Shabbat conversation  

At a time when being connected is everything, the concept of not using a cell phone for 25 hours a week seems unfathomable. Add in all the rules about not cooking, spending money, turning a light switch … you get the idea. Regardless of whether someone has been shomer Shabbat for a whole week or their whole life, turning down a team happy hour or Saturday brunch is never an easy decision, but one that someone observant will always take.

How to support your friend: Ask your friend if you can have a meal with them or meet them for a walk on the park. It shows you're accepting of their lifestyle and your religious friend will worry less about feeling like an outsider.

2. Having to explain their kashrut observance  

Whether someone is kosher-style, eats veggie out, eats vegan out or requires a strict hechsher, there is always a level of awkwardness when it comes to food. The last thing a person who keeps kosher wants to do is offend their friend or employer. However, Chicago is a big restaurant city and restaurants are a natural place to socialize. Anyone who keeps kosher often finds themselves trying to strike the balance between looking like a picky eater and doing what makes them comfortable and it can be difficult to have to explain that reasoning.

How to support your friend: First, make sure you understand that their definition of kosher might be different from how another friend keeps kosher. The easiest way to support them is just offering to go to a kosher restaurant with them. If that isn't possible (the kosher restaurant selection is less than desirable in Chicago), then ask what they are willing to eat. Frozen yogurt places, a bar and coffee shops are always a safe bet. Whatever you decide, make sure it's equally as uncomfortable for them as it is for you.

3. Why they aren't around or at work much during the fall

It doesn't take a Jewish day school education to know what Rosh Hashanah and Yom Kippur are about. However, you might not have learned about Shemini Atzeret or all the details that go into Sukkot. The fall holidays are almost always a stressful time for your observant friends as they try to stay above water at work while coordinating several Thanksgiving-sized meals over the next several weeks. This should hopefully not only explain why they essentially disappear from your life for a month and probably don't have vacation days for a winter getaway at the end of the year.

How to support your friend: Whether you celebrate the holidays yourself or not, this probably isn't the time to ask how their employer feels about all the PTO your friend is taking as it's likely to be a stressful topic of discussion. Instead, offer to come over and help cook for a meal or join them in a sukkah for dinner one night. The lesser known holidays can feel isolating when work is still happening, leaving them anxious for what awaits when they return.

While any observant Jew will tell you what they practice is extremely meaningful to them, they are also conscious that their lifestyle is different from the world around them. If you have a friend who considers themselves religious, support their lifestyle the same way you would with any other lifestyle by going the extra mile to make them a little more comfortable..

I'm four years into this whole parenting thing. It's amazing you spend years learning how to do math, science, the arts, but nothing to prepare you with teething, potty training, or whining. It's easier to get a baby than your driver's license. I'm not downplaying the importance of driver's ed, but we need some parent education.

Teething

I blame everything on teething from about five months to a year, according to my wife. To my defense teething can cause fevers, crankiness, wake them up at night, runny nose - the list goes on. I do not agree with the adage, "better living through medication," but a little baby Advil goes a long way. The ice ring that you store in the freezer is also helpful. Much to my wife's chagrin I allow our 8-month-old to chew on my hand, which he seems to love, but those little teeth are like razors. It's probably not the best parenting tip.

Snacking

When I was little I remember getting snacks after school, and maybe fruit after dinner; now it's out of hand. Sure I condone snacking, a handful of almonds at 3 p.m. is better than overeating at dinner, but do kids need snacks for a five-minute ride to a park? How much of an appetite do you work up swinging? Maybe we have gone snack-crazy, but I am ok with it and usually leave the house with lots. Here are a few staples from our pantry:

- Nuts and tree nuts
- Dried peas and edamame
- Raisins
- Cut fruit (apple slices might be the least messy)
- Carrots, cucumber and celery
- Pretzels (void of nutritional value but better than cookies)

Snacks are also great if you have a picky eater. A great thing to do with a picky eater is involve them in the cooking process. My toddler eats most things, but if it's something new, I'll have him toss in spices, mix up the batter, etc. and he's more prone to eat it. Although he's learned that fruit it not a treat, for the first two years of his life he thought blue berries were dessert. I'm not that mean, he still gets treats, just not every night. If you think sugar doesn't affect your child, they're probably eating too much of it. Childhood diabetes is sky rocketing and most of the time it's preventable.

The absent parent

I developed a new pet peeve. The absent parent is most obvious at the park or parties. These people are either on their phone, talking to friends, or don't believe in discipline. Watch your kid! There is a middle ground between corporal punishment and ignoring your child. The best method for us has been sticker charts. It's a little ridiculous that we made a chart for being good at nap time, but it worked. We also do time-outs, and barter with television time. Who knows what will work with baby boy number two. He already seems feistier than his brother, and he likes to be startled. Who likes to be startled?  

I'm a little nervous but mostly excited for what the next few years will bring.

There are owners and there are players, but general managers assemble teams and staffs. Who better to speak with than the president (former general manager) of the Cleveland Indians, Mark Shapiro.

Shapiro has pulled off some amazing moves (highlighted below). What you won't find below, however, is how everyone my age has some love for the Indians because of the movies Major League and Major League 2 (though definitely not Major League 3).

1. How do you get onto the baseball general manager/team president track?
There is not one answer to this question. When you find people who are successful it is because they are so passionate about that job that they are able to differentiate themselves in their highly competitive field. Everyone in baseball is smart. But each individual who is able to take what they are good at and use it to differentiate themselves, that includes players, will find success.

2. What was the best move you ever made for the Indians?
The Bartolo Colón trade was for sure the best transaction (The Indians traded Colón and Tim Drew to the Montreal Expos for Lee Stevens, Brandon Phillips, Grady Sizemore and Cliff Lee). But I think my best move did not necessarily involve players. I have also hired a lot of people for the organization. I believe I empower the right people inside the organization and those moves often outlive the player transactions.

3. You appeared in the movie Moneyball. What was that experience like? Was it realistic?
It was not very realistic or factual. I was the assistant GM at the time when Billy [Beane] was working toward changing the As. However, the book and movie both portray, some importance that has been implemented in baseball by As and Indians.

4. The Indians just drafted Brady Aiken. Are you excited about that pick?
We are very excited. When you look at draft board at any time there are a variety of ways a team can lean. Brady was a tough player to evaluate because of his injury but we were pleasantly surprised who was still available. He is a player with great talent and character. It is a very exciting move for the Indians.

5. How difficult is it to let great pitching like Cliff Lee and C.C. Sabathia go? Do you keep in touch with players you trade?
An organization or GM keeps in touch with different players on different levels. There is a certain level of professionalism within the job that comes to the forefront with every move. I am still close friends with Sean Casey and Victor Martinez. Victor among the toughest because of who he is as a person. My hope is that their time with Indians is part of their foundation and is positive experience in their baseball lives. When players look back on their careers, more than the uniforms or cities they played for, it is the relationships that defined their careers.

6. Do you feel the National League will adapt the designated hitter?
I am not sure that adapting the DH would be the best idea but I do believe that with interleague play happening every day that clearly the MLB needs one set of rules.

7. What was your Jewish life like growing up and today?
I grew up in a Reform household bordering Conservative. Judaism was very important to my parents while I was growing up. We attended a Conservative synagogue and I had a bar mitzvah. It was always a big part of family and culture. Today, Judaism plays into my life through culture and also the values that religion instilled in me.

8. Knowing how passionate Cleveland fans are about LeBron James, if James wanted to sign a minor league contract with the Indians, would you entertain the idea?
This is an impossible question to answer. I am not big on adding unnecessary distractions around the players. I'd have to answer, what is his intent? The reality is, he is 31 years old. I have seen LeBron swing a bat and he should probably stick with basketball.

As an out Jewish lesbian educator -- and the Executive Director of Gesher Chicago, a local LGBT organization -- I traveled to Israel in June with a delegation assembled by A Wider Bridge to better understand the country through the eyes of its Lesbian, Gay, Bisexual and Transgender communities.

Founded in 2010, AWB connects LGBT communities in the U.S. to those in Israel through year-round programming, online resources, and by sending LGBT delegates from the U.S. to Israel on trips like mine; AWB recently received a grant from JUF's Breakthrough Fund.

It was the personal stories of those we met that impacted me most. There was Yiscah Sara Smith, a transgender Jewish educator and author born a male. She struggled with her identity into her 60s before finding a community that accepted her and her transition as she accept herself.

This resonated with the theme of a Shabbat service I later attended in Jaffa co-led by a trans Reform rabbi. Rabbi Sholom of Hebrew Union College in Jerusalem explained that the Reform seminary was seeing an increase in LGBT candidates, as it was the only seminary in Israel that would ordain them.

Acceptance was epitomized at the Jerusalem Open House, a struggling grassroots LGBT activist community center in Jerusalem. The House has organized a Jerusalem Pride Parade every year since 2005 and even hosted World Pride in 2006, but has only received government funding in the last year or so. There, I met Daniel and Ariel, a couple of 57 years who never officially came out but made a life for themselves in Jerusalem. They belonged to each other as much as they belonged to the city.

Our trip to the West Bank was eye-opening. Our Palestinian tour guide, Tamer, was a former social worker who had worked with LGBT clients, and now is a PR consultant for the Palestinian government. Tamer took us to the Security Barrier, a refugee camp, Bethlehem, Jericho, the Jordan River and Ramallah. He said, "It is hard to be gay in Palestine." We learned that while areas home to Palestinians, along with some neighboring countries, do not openly ban homosexuality, Israel is still the only country in the region that offers any form of comprehensive legal protections to the homosexual community.

On our way to Tel Aviv, we visited Hannaton, a Kibbutz with a growing LGBT community -- in this case, five families … up from zero five years ago.

The highlight of our trip was Tel Aviv. There, we attended a three-day leadership conference marking the 40th anniversary of Tel Aviv Pride. Along with more than 100 LGBT delegates from around the world, we attended panels on issues concerning the Israeli and global LGBT community. These ranged from the relentless persecution of closeted Arab youths to the controversy of "pink washing."

On the second day of the conference, we attended the inaugural session of the Knesset's LGBT Forum, where they proposed a law to define crimes against trans individuals as hate crimes. Although the measure ultimately failed to pass several days later, those who sat in that room sensed that equity for all was on the horizon.

We didn't miss the opportunity to experience Tel Aviv's nightlife either, taking in the bars and the myriad of parties celebrating Pride. I attended Arisa-- named for an exotic spice-- which catered especially to Mizrahi (Middle Eastern) Jews. I danced with 1,000 Israelis while Yekutiel, a popular drag performer, sang (OK, lip-synced) her greatest hits.

Finally, there was the Pride Parade, which began at the Gay Center of Tel Aviv. No floats, only people marching. No designated numbers or a preset order, either -- everyone just picked up their banners and began to walk forward. Drag queens, families, and activists all marched as one. The parade ended at a huge outdoor concert featuring Eurovision's bearded winner Conchita Wurst where over 200,000 Israelis and world travelers gathered to celebrate.

I am still mentally unpacking all my experience in Israel. A Wider Bridge exposed me to a variety of people and viewpoints that laid the foundation for me to define my own personal views.

Israel is a safe place for those that identity as LGBT, but battles with the government and the rabbinate are far from over. Israel is a complicated place, complicated further with each person you speak to, but that doesn't mean you should stop speaking to people or remove yourself from the conversation.

"Gesher" means "bridge" in Hebrew. Our mission is, we say, to "bridge the gap between Pride and Tribe." I fully plan to make Israel and all its complexities a part of that bridge.  

At a recent event I came across a vibrant, expressive man in the midst of a "mid-life opportunity," surely not be confounded with a "mid-life crisis." Ears perked, I asked him directly what brought him to this event. His eyes were perfectly still and fixated on mine as the words left his mouth." After spending my whole life in the church, I'm leaving. I left. I'm making a clean break."

Up until this point, church was a daily part of his life. He was a graduate of primary and secondary religious schooling followed by an undergraduate degree in theology from seminary. As a gay man, he felt the right thing to do was pursue a different path.  

While religion, as it existed for him in the past, no longer appealed to him, he made another very interesting point. He said regardless of belief, he sees faith as a foundation for a moral compass. For him, this was a choice arrived at with major difficulty.

Naturally, this opened up a discussion of how others approach faith and their own personal experiences. It was clear that religion, in its many varieties, denominations and levels of observation, affected everyone in a deeply personal way.

I didn't grow up in a synagogue, not really anyway. I went to Hebrew school for a few years, learned about religion, culture, Hebrew and all that jazz. I don't keep kosher and I'm not observant. I connect to Judaism in my own way and that's what matters most to me. I like to look at my Jewish life as a carefully crafted mosaic, filled in with colorful moments that might seem disparate at the time, but when looked at from afar, are all connected to illustrate the larger picture.

Moments like my dad explaining the story of Anne Frank to me when I was very young; the countless hours spent learning the rudiments of my first second language at Hebrew school; my time in Israel on Birthright; my first Mourner's Kaddish for a family member; my eighth grade turn as Golde in Fiddler on the Roof at a the local children's community theater; the fun, funny, frivolity of "bar and bat mitzvah season;" taking part in traditions that were passed down to my family from generations ago; and sharing those traditions with those closest to me and starting new ones.

Some fleeting and some enduring, these moments come together as my perfectly imperfect Jewish identity. They have and will continue to shape me and how I find my way in the world.

Sharing concerns and experiences surrounding religion can bring about a quiet, overwhelming empathy. While I may not pray every day, when I see a post from one of my favorite lifestyle bloggers concerned for the medical condition of her young child asking for prayers, it's only natural to oblige. To make someone feel better in even the tiniest of ways, thousands of miles away, for someone who believes in a far different way than I do, is always worth it.

Thinking along these lines draws me back to my absolute favorite storyline from this season of Orange is the New Black. (Spoiler alert ahead, sorry!) Basically, for the uninitiated, many of the inmates figured out a loophole to get the best food in prison: asking for a kosher meal. Eventually, the administration got wise and cracked down on those deemed "non-observant". One of the inmates, even though turned away, embraced Judaism as her own in a very real way and gave an incredibly touching speech in the finale episode. I may or may not have teared up a bit? She found her people. And isn't that what it's all about? In the end, it's compassion that rules.