Category: Dance, Diplomacy and Kids’ Cancer (page 3 of 4)

A Brain Tumor At My Dance Recitle

Last week, 16 years after graduating, I went back to my old dance studio. The building is different and the technique has been turned up, but the environment was just the same. The culture, the 1986 trophies, my picture on the wall, the notice about competition fees and Cecchetti ballet exams, it all brought me home. This is how I grew up. I danced on the pre-Dance Moms competition circuit for most of my life. [You can watch humbling evidence by clicking here.]

This is where I fell in love with dance, with challenging my body, with entertaining a crowd. This is where I criticized myself in a mirror for over a decade. My teachers (Karolyn, Renee, Donna, Linden) pushing for me and my dance pals to take big physical risks and to dance with everything we had, from brain to pointed toes. This is where I eventually turned away from the mirror and the competitions, and toward artistry and altruism.

Bohaty’s School of Dance in Mid-Michigan. This is where I met some of the greatest and long-lasting friendships I have ever known. If you or your children dance, you probably know what I mean.

Yesterday I walked into the studio and hugged my former student Kelly, who is now a lead teacher. An impressive one at that. I participated in the stretches and exercises then sat on the side to observe. Kelly informed the students that there was a large card on the floor they all needed to sign after class, because one of their friends has a brain tumor. Tomorrow this tiny dancer, Lauren, would be facing another brain surgery.

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I accidentally dropped my pen. Struck by the words. Another dancer. Another brain tumor. Another relapse. Another surgery.

Childhood cancer striking another dance studio.

This is Lauren. She is 10.

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As you can see by her self-made photo, she hearts dance. She also kept getting headaches. The doctors found a lemon-sized tumor in her brain 19 months ago. They did brain surgery right away and her family was told there was only a 1% chance the tumor would return.

But it did.

And so this dancer is facing another brain surgery.

This news hit a particular spot in me. Donna was a student of mine. She danced every week, despite having a brain tumor. She had a relapse. She had another surgery, and another. She learned to walk and talk all over again, several times in her four years. Read her cancer story here. She was amazing. She continues to inspire me, friends and strangers around the world to do Good Things in her name. Maybe you’re one of them.

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Donna and I on her 4th birthday.

If you’ve been following my blog, you probably know my mother is fighting breast cancer and that my father and grandmother and aunts also battled cancers. My heart and support is with them. But when it comes to this cause, my dollars and energy go to the kids.

Like the color for breast cancer is pink, the color for childhood cancer is gold. There are no NFL players wearing gold socks; no gold buckets of chicken from KFC; no overpopulous of gold ribbon water bottles. Many national cancer organizations use children’s faces but little (half a penny for every dollar donated) goes towards treatment, research or trials for children’s cancers. I wrote about this desperate underfunding in a previous blog post.

  • worldwide, a child is diagnosed ever three minutes;
  • brain tumors have a 50/50 cure rate in the US, and some childhood cancers, like DIPG, are known to be fatal with no known treatment or cure;
  • 73% of kids who survive their cancer will have chronic health problems as a result of their treatment.

And if you know this issue, you know that kids are not just mini-adults. Their cancers require specialized treatment.

St. Baldrick’s is one organization doing the most for childhood cancer. On March 24 last year, during an event produced by Donna’s Good Things, I shaved my head for the cause. We raised over $79K and witnessed the oncologists and researchers receiving the actual funds. Dr. Lulla is using the grant money for a “A Longitudinal Study of Biomarkers in Pediatric Patients With Central Nervous System Tumors.” Other programs include research in how to maybe preserve fertility for these children, as well as a nurse or specialist to better explain the processes to the kids. St. Baldrick’s is the number one funder of research for childhood cancer outside the US, granting over $125 million since 2000 to labs and hospitals.

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The First Annual Donna’s Good Things – St. Baldrick’s Event 2012

Next month, Donna’s Good Things is again hosting a St. Baldrick’s event, with shavees ages 11 to 89. I will be back in Egypt and won’t be shaving this year. But I am inspired that a childhood friend of mine has decided that she would be gracious enough to step in. She has committed to driving hours to Chicago and shaving her pretty locks. An act of courage and love, believe me. You can donate to her campaign here. Right now. Click the green button and give $5 or whatever you can.

If Donna can no longer dance, maybe we can make it possible for Lauren.

And to Lauren, we say, “Keep your dancing shoes on, gal. Keep hoping.”

 

Chemo on Valentines

She drives her car. I sit beside her. She walks into the building and immediately sits down on the bench in the entranceway. Out of breath. Woozy. She leads the way to the elevator and pushes the button for the 4th floor. A man with a bald head like hers and a cheeky smile wishes the two of us a Happy Valentine’s Day. I think she sees him here often. She leads the way to the reception desk. She leads the way the window-filled treatment room. She goes straight to the scale to be weighed. She engages in some banter with the nurses and a newbie here from the local hospital, here to practice accessing ports, because they don’t get enough of that in the hospital. The process of accessing her port is bloodier than I had expected. Her humor and calm are more than I had expected. I sit in what seems to be a side-car seat attached to her clinical recliner. And the two of us stare at this…

Onc./Heme Associates of Saginaw Valley

They run blood tests and a sheet comes back with numbers I don’t understand. The nurses talk to her about her hemoglobin. Some sort of problem. They inject something to ward off nausea. There are three little bags of pre-meds. Takes over an hour. Followed by two big bags of chemo, Taxol. Her last treatment in this round. We will be here for three or four hours. She doesn’t want the TV, or a snack, or a magazine or word puzzle. She doesn’t want the foot rest because she wants to swing her legs, dance around.

Other adults come and go, getting the shots they get during their off-weeks from treatment. She is the only one here to stay for chemo.

While we wait, she writes the nurses a check. Co-pays are due at the time of treatment.

“Usually the chairs are full. It is rather lonely today.” she says.

Even when cancer patients have friends and family around them during treatment, it can be a lonely place. I see it in their eyes. From Cairo to Michigan. There is a strength and sense of company that only they can find.

That only Hussein can find.

Picture courtesy of Hussein

Hussein at teen peer group at 57357 Children’s Cancer Hospital Egypt.

 

That only my mom can find.

Chemo on Valentines

And today is Valentine’s Day.

Happy Valentine’s Day to anyone around the world, of any age, keeping themselves company on this journey to rid themselves of cancer.

Celebrate love.

Beyond Belief: The Holy Land, part 3

 Part 3 – Dance & More Dance

Almost a year ago, I flipped on CNN and caught a short feature about a dance educator in Palestine. She is an entrepreneur who founded the Ramallah Ballet Center. I immediately sought her out on Facebook and sent her a friend request. She could not have been more open and we became fast friends. When my Fulbright ended a few weeks ago, I knew I had to go to meet her and her students.

So I went.

First day of the new term at Ramallah Ballet School and Dance Center.

And on the way, I met old friends and new in both Palestine and Israel. And I learned that dance and more dance is vibrant on both sides of the wall. On all sides of the politics.

In the heart of the old part of Tel Aviv is a complex of buildings dedicated to dance. The illuminated old square holds performance space, rehearsal space, workshops and administration for two main companies, Inbal Pinto and Batsheva. Both companies are world-reknowned, and favorites of mine. The theatre there also brings in international performances constantly. I didn’t stay in Israel for long because I was already familiar with traditional Israeli dances from my time in Chicago and was aware of the work of the main companies. But I had little knowledge of what was happening in Palestine.

On the mountains of Bethlehem are four enormous modern buildings, being built by the Russians. They will hold arts classes and other services, but unlike other constituencies helping boost Palestinian programming, they will be competing with Palestinian civil society organizations. This is a growing concern and controversy.

On those same mountains of Bethlehem are buildings for the Palestinian civil society organization, Diyar Consortium. One of their divisions offers free dance and football (soccer) lessons and clubs. Soon they will also offer art and music classes. The Diyar Dance Theatre  is their flagship program. There is a semi-professional adult group, all volunteers, along with a junior troupe. This is a diverse group of Christian and Muslim Palestinians from different economic backgrounds. Some dancers come from a nearby refugee camp. I saw them perform in a church in Chicago. Amazing. Mixing traditional Palestinian dance (dabkeh) and powerful dance theatre.

Their words describe the work much better than I ever could…

“The Diyar Dance Theater believes ardently in the value of preserving the culture of the Palestinian people. Passing along culture through the visual and performance arts, food, and literature has been a primary means by which Palestinians have held on to their identity, values, norms, and traditions, not only in the occupied territories but also in the Diaspora. Protecting this culture is essential in the struggle for independence, for it is a source of hope, a fuel propelling the Palestinians from the past into a more promising future. It reminds them they are more than their present circumstances: there is vibrancy in who they are as a people.

For Palestinian youth in particular, dance and theatre are important vehicles not only for cultivating cultural identity but also for creating and sustaining mental and emotional health. As tools of expression, dance and theater become outlets for those wishing to release the stress accumulated from years of living behind concrete walls. Working out issues through art builds self-awareness, and dancing away the week’s worries aids with self-esteem. At Diyar Dance Theater, youth can create movements for justice and gender equality that are more powerful than rocks and angry words.

But perhaps most importantly, coming together to produce a performance piece teaches youth how to mobilize themselves around a shared vision… At Diyar Dance Theater, youth are catalyzing change in themselves and in their community….What happens on stage tethers the two in a way discourse and debate often cannot.”

During my visit, I had the honor of teaching workshops and classes both at Diyar Dance Theatre and the Ramallah Ballet Center. 10 children in one begining ballet class, 25 teens in a swing and musical theatre class, and 10 adults and young adults in an “Intro to Jazz Dance” workshop. All joy.

With Diyar Dance Theatre in Bethlehem

The day after, I received the following message from one of the teen dancers:

hello  i ‘m from Dyiar dance theater …. i wanted to thank you for the amazing dance lesson ! AWESOME !hah
very nice meeting you
lots of love ,
Lara

In the city of Ramallah, there is an organization called Sareyyet Ramallah (First Ramallah Group). Every April since 2006 they have produced the Ramallah Contemporary Dance Festival with the help of the regional Masahat Contemporary Dance Network which includes not only Sareyyet (Palestine), but Maqamat Dance Theater (Lebanon), The National Center for Culture & Performing Art (Jordan), and Tanween Dance Theatre (Syria). According to its mission, “the Festival aims at promoting dialogue and cultural exchange between the Palestinian people and the peoples of the world. It also aims to introduce a variety of contemporary dances to the Palestinian people and to develop the capabilities of those who work in the dance field in Palestine. The Festival targets the Palestinian public in general and the youth sector in particular.” During the Festival, there are performances, workshops, a Dance & Society conference and an International Dance Day celebration. This is much more progressive and put together than anything I’ve seen in Egypt.

Sareyyet Ramallah also provides dance classes (Dabkeh, ballet, contemporary) for about 120 children. Beginning as a Scouts organization, they now also do basketball, swimming, summer art camps, theatre, karate, clay and wall painting, football (soccer), and much more. Every year they host the Martyrs Basketball Tournament.

In my last blog post, I wrote about genocides. I believe the arts have are a mighty tool in both preventing and reconciling genocide. Recently came across this project and found it intriguing. http://www.artstoendgenocide.org/stomp-out-genocide.html Maybe I should reach out to them.

Yes, dance is almost everywhere. Yes, dance is mighty. Yes, we need collaboration more then competition.

Yes, we need more dance that brings together Israeli and Palestinian citizens, Jewish settlers, and Palestinian refugees. Somehow. Let’s do it.

Keep dancing.

 

Previously posted… Part 1 – Pilgrims & Settlers and Part 2 – Halves & Holes

You can view the full photo album on Facebook.

 

 

 

Beyond Belief: The Holy Land, part 2

Part 2 – Halves & Holes

What Muslims, Jews and Christians share is a descendancy from Abraham. And his tomb lies in Hebron (Al-Khalil in Arabic), half inside a mosque, and half inside a synagogue.

Palestine is currently the Gaza Strip (where I am not able to go) and the West Bank (which is actually east of Jerusalem). The West Bank has three main areas. Only 3% of it is considered Area A (under full Palestinian civil and military control). Both Ramallah and Bethlehem are Area A. But there are checkpoints to get in and out of the different areas. A friend’s mother, an American, was going through a checkpoint this week. She recently had hip surgery and has a metal rod. This set off the metal detector and she was made to take off her pants. I can only imagine being in her place.

27% of the West Bank is Area B (Palestinian civil control, Israeli military control). But 70% of the West Bank is Area C (full Israeli control). Hebron is considered both Area C and Area A in almost an apartheid system.

I didn’t know any of this info before this week.

There is a wall around the West Bank, along the Armistice “Green” Line. I was told the Wall is actually illegally built quite a distance in to the Palestinian territory, making their diminishing portion of the land nearly 10% smaller. Not sure how accurate that is. Usually the Wall is clean on the Israeli side, and full of amazing and colorful street art on the Palestinian side. Most notably, some Banksy works. There is even a Banksy shop near the wall in Bethlehem.

Israel has both Tel Aviv and Jerusalem. Both amazing and welcoming cities. Great public transportation. Signage in Hebrew, Arabic and English. Unlike Cairo and Ramallah, there is extreme law and order. But that law and order oddly feels like it might erupt. Today is Election Day in Israel. We’ll see how right they go.

Oh Jerusalem.

The talk is that the Israeli government is trying to build-up Ramallah so that Palestinians dismiss their dreams of a Jerusalem capitol. Arafat’s tomb in Ramallah is built over water to show that it’s a temporary placement. His last wish was to be buried in Jerusalem. And until the Israeli authorities allow that, there he lies.

I’ve been thinking a lot about holes in people’s stories. On both sides. Holes in the tapestry of history. What if we weaved them together?

Would this weaving reveal something helpful? Maybe the guide to the Holocaust Remembrance Museum and the “Tourist Guide to the Occupation” could be distributed together. Or maybe those on different sides of conflicts could collaborate on remembrance museums and gardens.

We must remember those who died in all genocides.

And that got me thinking about a dear friend of mine who survived a concentration camp in Bosnia in the 1990s. A guy near my age who suffered real torture. I read his biography and the horrors are beyond belief. Horrors reflective of those I saw in the Holocaust Remembrance Museum in Jerusalem.

Last March, I was in Dachau, Germany and visited the Concentration Camp Memorial Site there. Absolutely stunning. Especially if you go bald as I did and feel the chilling, solemn winds on your naked head. Standing amongst the barracks. In the center of the museum complex is a large sculpture by Yugoslavian artist Nandor Glid. The title of the sculpture is “Never Again.”

But genocide did happen again. In the ex-Yugoslavian land called Bosnia… In the small Northwest Bosnian village of my dear friend.

He and others in the area are working toward remembrance museums, plaques at the sites of the concentration camps and mass graves, days of remembrance. But the mayors of these towns are not allowing any of this.

There is a global Stop Genocide Denial campaign I highly recommend where you can get more information.

I spent my last couple days in Palestine enjoying bread with olive oil & thyme, seeing the workshops of the craftsmen making olive wood figurines, seeing the spectacular views from the Bethlehem mountains, touching the spot where Jesus was born, and asking my friends questions.

I learned that most schools in Bethlehem have Fridays and Sundays as their weekends (respecting both the Muslim and Christian students). The private schools have approximately 20-25 students per class, but the government schools have 40-50.

I learned that there are three refugee camps in the area around Bethlehem, with one right in the center of town. The camps looked to me to be walled-in slums with vibrant political graffiti.

I learned of recommended readings I have yet to read: “I Saw Ramallah” by Mourid Barghouti and “Jerusalem: The Biography” by Simon Sebag Montefiore.

And I learned that time and time again, dancing gets us out of this complicated, messed-up darkness.

 

Next part of the Beyond Belief series… Part 3 – Dance & More Dance

Previously posted… Part 1 – Pilgrims & Settlers

 

You can view the full photo album on Facebook.

Beyond Belief: The Holy Land, part 1

Part 1- Pilgrims & Settlers

Sitting in Amman airport during the layover from Cairo, I saw at least fifty pilgrims. Men in simple, draped white cotton forming the effect of a wrapped towel around the lower body and a sort of shawl around the upper body. And plain leather sandals. Mind you, other people in the airport had on winter coats and boots. They looked to be heading to Mecca. For the Hajj perhaps. I have seen pictures of my friends in this robe, but never up close in person. I felt oddly at home.

When I landed at Ben Gurion in Tel Aviv and made my way through the airport, I also felt strangely at home. No, I am not Jewish. I grew-up Lutheran and became Agnostic after September 11, 2001. But while I was living in Chicago for eight years before coming to Egypt for the Fulbright, I taught dance on Sundays in West Rogers Park. If you know that area of Chicago and that day of the week, you could guess that a majority of my students were Orthodox Jews. I taught children, teens, and choreographed an all-female, Orthodox version of Seussical which raised funds for the necessary alternative 911 service for Hasidic Jewish families.

Throughout my eight years teaching in this community, I learned about gender restrictions for performances, appropriate costuming, Kosher birthday parties and backstage snacks, all about Yom Kippur and Purim. I made friends. In terms of movements, I learned that shoulders can go up & down, but not forward and back. No hip rolls. I also learned that married Orthodox women cover their heads with either hats or nice wigs. I learned of their good spirit, big families, love of dance, and dedication to the community.

So when I landed at Ben Gurion and saw the wigs, black skirts, kippahs and borsalinos, I felt at home. Like someone in front of me would turn around any minute and hug me as a friend.

But then I accidentally said Shukran instead of Todah to the guy who gave me directions. He gave me the eye.

I was coming to Israel and Palestine just to see. To see friends. To see if there might be future partner organizations for dance projects. To see what is happening. I can’t go into the Right to Return or Israeli Defense. That’s not what this blog is about. I decided to venture into The Holy Land with an open heart and write my personal experiences.

In Tel Aviv, I stayed one night with a good friend I knew back in Chicago. She’s been living in Israel for years now. A liberal, an artist, a compassionate gal. She’s been an inspiration to me ever since I met her in 2005. And her mother is also a wonder. They showed me the magic and history of the Tel Aviv. They shared family stories and showed me the Muslim cemetery, near the beautiful beach.

Then I got on a bus to Jerusalem. Visited Mount Herzl. Back in Chicago, I worked with children at Theodore Herzl Elementary School. The student population at Herzl is over 95% African American and nearly 100% low income. The school in a desperate moment of plight, turnaround, and transition. When I think Herzl, I think of last year when we brought the poorest children there Christmas gifts. So when I got to Mount Herzl to see the breathtaking Yad Vesham Museum (Holocaust Remembrance), I was shocked to realize Theodore Herzl was a big-time Zionist thinker. And the building next to the museum is for the World Zionist Organization. I became uncomfortable.

I started to think about the differences between Pilgrims and Zionists. Pilgrims and Settlers.

And I saw the sights in Jerusalem that pilgrims flock to:

The place where Prophet Mohammad (PBUH) ascended to Heaven. — ‎at ‎القدس -فلسطين‎.‎

Jesus’ tomb.

Western Wall (The Kotel), the only remnant of Judaism’s holiest shrine, where the second temple once stood. — ‎at ‎ירושלים‎.‎

 

Two of my Palestinian friends who live in Bethlehem have wanted to go to Jerusalem, as pilgrims, but have not been able to. They must apply to the Israeli Government for a special 20-day pass, valid during the Christmas season only. This is the first time in over 12 years they have succeeded in getting approved.

After Jerusalem, I went to Hebron (Al Khalil). It was one of the oddest place I have ever been to. Tense. Icky. A Jewish settlement right in the middle of town. The Wild West. Israel has no constitution, so I’m not sure how its citizens get rights, or what rights the Palestinians have under their care. But anyhow, I just don’t know. What I do know is that many of the Jewish settlers acted like cowboys heading to the hills, to the real estate with Arabic writing, to the land God promised them. I could be very wrong, but that was the impression. They kept to themselves, didn’t talk to us or anyone, but felt the need to carry M16s to synagogue even though the Palestinians on the other side of the fence are frisked everyday by the military, go through metal detectors to get to and from home, and aren’t allowed weapons. It was entirely odd to me. It was beyond belief.

And I somehow still felt at home. Maybe because this is The Holy Land and whenever I sneeze here, it feels beautiful when someone says, “Bless You.”

 

Coming soon…

Part 2 – Halves & Holes (Ramallah and Bethlehem and more from Hebron)

Part 3 – Dance & More Dance

 

You can view the full photo album on Facebook.

 

Cancer on Two Continents: A Dancing Day at 57357

When you are 4-years-old and there is some beast inside you that you don’t understand. When you are told you are sick and you don’t feel sick. When you are 13 and facing chemotherapy and puberty simultaneously. (Well, some version of puberty.) When you are 7 and your limbs don’t respond the way you want them to. The way they used to…when you used to be able to swim and run. When you don’t feel comfortable in your bones. When the adults around you offer you strange smiles. When the tumor on your little head is obvious for all to see, and your classmates stare at where your eyebrows used to be.

That’s when you boogie.

Dancing at 57357 (Photo by Mohamed Radwan)

I met a young dancer named Donna Quirke Hornik back in Chicago a few years ago. She stepped into my dance class at age 3 and changed my life. She danced every week even though her small body went through surgeries, transplants, chemo, radiation, and treatments I can barely imagine. She had an aggressive brain tumor. I saw how dancing gave her both a physical therapy and a sense of being hopeful and happy in her body. Because of her, I got involved with Children’s Memorial Hospital, now Lurie Children’s Hospital of Chicago. I joined the Young Associates Board and kept on teaching dance to current and former patients.

Donna taught me to say yes to all of life’s experiences. She taught me to feel fears and pain fully, then move on. She taught me that when there is misbehavior all around you, stay focused and wait it out. She taught me that when you fall, you have two choices: get yourself up or ask for help. She taught me to be articulate and positive in explaining what I need. She taught me that there is no excuse not to dance and laugh. She taught me that each day counts, so ask for the good macaroni ‘n cheese.

Donna passed away peacefully at home in October 2009, between her loving parents. When she left, they vowed to keep doing good things in her name and founded Donna’s Good Things. When I came to Egypt, I brought a little bit of Donna with me. Her courage, her humor, her energy and empathy. I signed on to volunteer at 57357 Children’s Cancer Hospital Egypt as a dance teaching artist, providing both dancing sessions for different groups of patients and dance therapy for the teen peer support group. All good things.

Childhood cancer is the same here in Cairo as it is in Chicago. It is the same beast. Although, lymphomas are more prevalent and rates of survival are generally much lower. Fundraising via social media is almost unheard of here. And there is mistrust of health care directors who people believe profited during the Mubarak regime. Religion, corruption, and politics are huge factors in both countries. But the child superheroes are the same. They are joyful and generous even under the most difficult of circumstances.

This past Thursday, I was honored to bring about an event that was pretty much my dream when I came here. To bring together the faculty and students of the Academy of the Arts’ High Institute of Ballet where I am teaching, and the world of 57357.

The primary school students of the ballet institute came to the hospital and performed three numbers: a lively folkloric routine, the Russian Trepak from The Nutcracker, and a pop jazz routine to Mambo No. 5. They performed three times total: once onstage in the auditorium for the out-patients, and then twice on different in-patient floors for the patients too sick to leave the ward. The staff at the hospital were kind enough to provide full support for the music and lighting. It was a real show. Rock concert quality.

High Institute of Ballet performing at 57357 (Photo by Mohamed Radwan)

After each performance, the staff gave out the Twinkies and treats they had brought for the kids, and I led the patients, parents and nurses in a participatory dancing session. This was similar to what I regularly do at the hospital, but this was the first time the faculty of the ballet institute had seen such work. I looked to my left and there were all they were by my side, on their feet, joining me, engaging with the patients. They were hooked. I think these faculty members will definitely continue this work and a strong partnership will develop. Inshallah.

At the end of the day, the faculty had to get the dance students back onto the bus, so I stayed on to lead the last dancing session on my own. There was a girl of about 12 years. She had a hair net, a slouched and weak posture, and was in a wheelchair pushed by her father. She sat on the far side of the audience on the in-patient lobby, clapping along to the healthy kids in their sparkly costumes dancing to Mambo No. 5. Then I started to dance with all the patients, many moving just one arm cause of the IVs. I walked over, grabbed the arms of her wheelchair, and pulled her onto the dancefloor. We span in circles, wheelchair and all, together with the other dancing patients. Unable to speak the same language except for the one in our bodies. Her father beaming from the side. Her face all smile and her arms outstretched to their full potential. That is what this is all about.

Dancing at 57357. (Photo by Mohamed Radwan)

Following the event, I received this message on Facebook from a friend working at the hospital, “57357 and its children are grateful to you : ) . You drew smiles and made a lot of people and children laugh. Can’t imagine that you will leave us one day 🙁 .. Love you.”

Don’t worry, my friend. With these kids, there will always be dancing.

 

* For more photos, please visit the Facebook album.

**This post is a follow-up to a previous post, Dance and Cancer.

***The views and information presented in my blog are my own and do not represent the U.S. Department of State or the Fulbright Scholar Program.

 

The Health and Hope Oasis

25 Egyptian teenagers with different cancers at different stages, 35 siblings, volunteers, nurses, oncologists, social workers, and one dance educator from Chicago spend 3 days in a remote complex on a fruit farm in Wadi Natrun, about 2 hours northwest of Cairo. This is a place where you can see the stars at night. 4 people per room. Each room making a new camp family. No cell phones allowed.

We board a quiet bus on a Thursday afternoon in Cairo and drive out of town. As we pass the great Pyramids of Giza, no one on the bus says a word about them. These great wonders are old news for the children who live here.

Pyramids of Giza. A view from the bus. On the road to hope and health.

We arrive at the Health and Hope Oasis to applause and a brilliant traditional meal (sort of a sauceless lasagne) followed by rice pudding.

This trip is the first of its kind for the Children’s Cancer Hospital Egypt 57357. The hospital is completely free for the patients, all of them, and so is this experience at the Oasis. The staff hope to hold camps as often as possible throughout the years, but there are too many cancer patients to reach. They’re not sure what will be possible without full-time camp program staff. The Oasis facility and farm, from what I understand, were built with help from the Presbyterian church and is run by an organization called Friends of Children With Cancer.

The Health and Hope Oasis, Egypt

Night one, as we are all sitting around waiting for the campfire to come to action, I lead the group in a lively, goofy kids’ game I learned from Bosnia. Later that evening I will have a long discussion with two of the patients about Bosnia, of which they have only heard of vaguely and of which they have many questions.

Sticks are found around the grounds and then Patricia, the head of the hospital foundation, approaches the campfire to roast her marshmallow. There is a hush. Then one of the patients asks me why Pat is doing that. I explain the concept of S’mores as the staff bring out biscuit cookies and Cadbury chocolate bars. The next couple hours are pure magic as one-by-one they each delight in their first S’more.

The rec room building is opened up around 10:00 pm. Along with air hockey, ping pong, board games and a sound system, it has a full size trampoline with safety net. Inside the building, mind you. Awesome. I was one of those gymnast kids who grew up with a trampoline in my backyard. So I jump right in and start teaching the teens some of the jumps and games from my childhood. After just a few minutes, I was politely instructed that I shouldn’t be bouncing on the trampoline with boys. Almost everything is allowed here at camp except for littering, cell phones, and co-ed trampolining.

Later, I go up to a young man who’s always sitting alone and he tells me he “loses all his happiness” when he’s on his chemo treatments. Another volunteer joins us to help with some of the translation and I show them a pic of my bald head from the St. Baldrick’s event. My new friend understands what I did, and why I did it, he pauses with a tear in his eye, says it was one of the most beautiful things he’s seen. Then he gives me a friendship bracelet off his own wrist. And I cry a little.

My New Friend and I

Camp activities include a personal development session with Quest, journaling (during which I share stories about Donna and Shea), art therapy, football, Friday prayers, jewelry making and social times at the canteen where they have fresh guava juice with milk and little cakes. I lead stretches every morning, creative dance sessions every afternoon, as well as guided breathing and movement exploration before bed for those still up at 2:00 am, which is most the campers. I learn new games from the staff, and  by the second day, I find them facilitating the games I shared. Love when exchanges work.

There is a session early on the second day where we are each given a blank piece of paper to tape to our back. We go around the room writing descriptors on each other’s papers. Most write in Arabic, but not on my sheet. At the end of the activity, we remove the paper and see what people have written. Mine says…

  • Open hearted for all
  • Good spirit & lovely presence
  • …ا ِحنا َ  ِحنا َ (Some beautiful, generous statement I am having trouble reading and remembering the translation of.)
  • Funny
  • Cute & Active
  • Active all the time
  • So pure
  • Energetic
  • I hope you like us as well as we like you.

These statements call for me to read them twice. I am incredibly humbled. Open hearted for all. These new Egyptian friends understood me in less than 24 hours. I hope they like me as well as I like them.

I spend some of the down time learning Arabic from the girls, practicing my numbers, making sure meds are in the right hands and watching how the docs check blood pressure. Other free time is spent coaching one of the staff’s son on cartwheels. He was crashing to the ground and frustrated. We didn’t speak each other’s language, but eventually he was landing all his cartwheels on his feet. Proudly.

Cartwheeling

There are two spontaneous Arabic dance parties on the second day, where I am the student. Belly dance is approved. But I guess there are some arm movements the girls taught me which the staff do not approve of. Still trying to figure that out.

 

And by Day Three, the campers show that their spirit is much stronger than the cancer inside them.

(If you look closely, you can see I’m wearing his friendship bracelet.)

Day Three

 

Dance and Cancer الرقص والسرطان

As alumni fellows of the UN Alliance of Civilizations International Fellowship program, me and my colleagues have recently made an official declaration that was delivered to the Heads of States and Governments during the 67th General Assembly of the United Nations.

I’m proud to have signed this declaration advocating dialogue of the #TrueMuslimWesternMajority, but understand my ongoing contribution to this dialogue will be less about religion and free speech, and more with dance and cancer.

I went to observe classes at the High Institute of Ballet in Cairo, where I will be co-teaching with grades 7, 8, 9 (ages 14-17) modern dance classes in addition to workshops on community arts with the undergraduates.

The faculty are contemporary dancers with well-established performing credits. Much more so than I. Their teaching methods are also very different than mine. One is laid back, sits back, calls out the warm ups and lets the students go home early. Yet, I understand this was the first class back after two months summer/Ramadan vacation. Another teacher is a man I am going to have to work harder to understand. He smokes during class in the hall, he is extremely hands-on forcing students into stretches and slapping kids alongside the head, and he indulges an elitist approach. But he is an exquisite dancer and cares a lot about his students. So I’ll start with those assets.

All the students are Egyptian, but a few are from Russia here because of the Institute’s deep history and continued connection to the Bolshoi. Most faculty slip between Arabic, Russian, French and English during their instruction. The head ballet master for the boys’ classes is extremely polished and I admire his teaching style. I asked how often he changed-up his barre exercises. He replied, “Oh, it’s not about time. It’s about progress. When I see the results in the students’ technique, either positive or negative, then I change as necessary.”

Yesterday, the two male modern dance teachers sort of challenged me to teach a few minutes. I had the students stand in a circle (rather than the standard lines) so that their would be more equality between the teachers’ pets and the slackers, between boys and girls; so that there would be more self-critique and peer support rather than dictatorial direction; and so that we could see each other’s faces when laughter broke out. Accidentally, my portion of the class went over 8 minutes. It was unclear if any of the students or faculty enjoyed it. Few emotional cues. One female student later requested to add me on Facebook, so there’s that.

In any case, these are dance trainees working every weekday from age 8-20 at this Academy in order to make it into the Cairo Opera Ballet or international companies. And yes, the school has grades with nearly twice as many boys as girls.

Grades 7 and 8 (Ages 14-16) at the High Institute of Ballet, Cairo

 

After class, I walked around and picked up the few scraps of paper, left-behind ballet slippers, and a used tea cup. I took the tea cup up to the main office and asked where I should put it. The Dean got a bit upset and asked why I was cleaning. “That’s not your job!” He then demanded to know which studio was dirty so that he could have a word with the janitorial staff. I felt awful and explained that I believe everyone should lend a hand, that I enjoy cleaning, that the studio wasn’t very dirty at all, and that it was all ok.

There is definitely a thing here in Egypt about everyone having a job. Yes there is an unbelievable high rate of employment, but almost everyone has “a job to do.” As I was walking home, looking around, it came to me that protest & graffiti tagging is some people’s role here, as is the policing & the painting it over.

Graffiti on Kasr Al Aini Street

Back to the dancing in Cairo.

Today was a very different experience… the first dancing session at Children’s Cancer Hospital 57357 and it went beautifully. As expected, there was a bit of a nervous start but then many children jumped in and started dancing. After we convinced them to turn off the TVs and Play Stations, we found lots of joy.

We boogied, we balanced, we stretched, we sat still, we leapt in the outpatient playroom with different groups of patients awaiting their treatment. The staff offered me the much larger lounge with extra space but that is a peaceful area with sofa chairs where kids are getting their chemo; would feel weird to dance and play in front of them.

Many of the parents took pictures the whole time from the playroom doorway and watched with smiles on their faces. After the session, a woman with full niqab and abaya came up to me and asked my name and where I was from. She held her 1-year old daughter in her ams. Too young to dance with us, the baby girl watched transfixed. She had a lovely, layered pink dress, bald head, gold earrings, cancerous tumor somewhere near her brain, and the biggest smile I’ve come across in quite awhile. Her mother thanked me much more than I deserved. There were plenty of thanks to go around.

The Communications team at the hospital plan to do a feature on the dancing sessions, so I will be sure to share that with you. I’m also excited that some of the older students and faculty at the Ballet Institute are interested in coming to the dance sessions at the hospital.

Beyond just the joy of the patients, what I love about being here is that these parents at 57357 get it. Dance is so important for kids to get to know their bodies, to relate to other children, and to explore the freedom the revolution gave them, no matter what cancerous beast may be inside.

In Egypt, everyone has a job to do. I think this is mine. Well, ours. Me and the kids. Our job is to dance.

Patients/Siblings/Dancers at Children’s Cancer Hospital Egypt 57357

***The views and information presented in my blog are my own and do not represent the U.S. Department of State or the Fulbright Scholar Program.

A little speech about volunteering with children with cancer

Today is my last meeting at Children’s Memorial/Lurie Hospital. I have been asked to prepare a little speech.

Today I am not here to tell Donna’s story. She was a girl who lived a bright but cruelly short life. And she changed my life to its core. I could never do her story justice, and her parents tell it best. Her story continues now as good things are being done in her name. Today, I am only here to explain why I give my time, energy and dollars to the Young Associates Board at Lurie Children’s Hospital of Chicago.

First of all, cancer brings out the best in people. It is an evil disease. Sickening and dark.

Donna and I in 2009.

But those who face it are superheroes. In and around cancer, you find the most amazing people (even though they say they had no choice but to be amazing). Also, in and around cancer, you learn the most profound lessons. You become better. No doubt. It might sound selfish, but this work does wonder for my own development.

Yet, I don’t volunteer with organizations supporting research/programs for adult cancers. My father faced cancer, my grandmother died from colon cancer, and both of my mother’s sisters battled breast cancer. Yes, cancer can suck it. But I volunteer to support those facing childhood cancers because I know it is an area so desperately underfunded and so very different than adult cancers. I know the American Cancer Society is the “sponsor of birthdays” and uses kids’ images in their ads while only giving $0.01 (penny) from every dollar they raise on childhood cancer research. I also know that the Susan G. Komen Foundation has spent millions to sue small organizations that use “for the cure.” I know that the National Cancer Institute (NCI) which is our public tax dollars at work decreased funding every year 2003-2008. The current funding is $26.4 million (or 4% of the NCI budget). By comparison, public funding for AIDS research is near $254 million; funding for breast cancer is near $584 million. We simply don’t have the numbers.

But pediatric brain tumors are the deadliest type of childhood cancer. And killed my dance student, my friend Donna when she was 4 ¼ years old.

A list of those outstanding organizations directing at least $0.80 of every dollar to childhood cancer include St. Baldrick’s, Alex’s Lemonade Stands, The Rally Foundation, Bear Necessities, and the Young Associates Board. I volunteer here because Dr. Stew, Dr. Jason, the nurses and the whole team go above and beyond the work they do saving lives; they also save the quality of lives. Once I learned from Dr. Stew that finding cures and lifesaving were just two of the goals, I saw my place in this work much deeper. Many of the kids you will meet on the oncology ward may die or may struggle. It’s true. But I think that is no reason to look away.

Yes, you will meet parents who grieve for their child, but know they did everything they could and gave their kid a beautiful life. Bereaving families are as much a part of this cancer community as those currently fighting and those who survived. We’re all together in this. When you meet survivors of childhood cancer please understand they face side effects for the rest of their days, including permanent organ damage, infertility, dental decay from having to imbed oral chemo in the sweetest of treats, delayed development (walking, talking, learning, social), swelling, nerve damage, and second cancers. Many will struggle in college. Many will always have the fear that cancer will come back.

So as you go into this year with the families on the 17th and 18th floors of Lurie Children’s Hospital of Chicago, please…

  • Offer joy.
  • Bear witness.
  • Share stories and legacies, including those from 4W of Children’s Memorial, as the move to the new hospital is both thrilling and painful.
  • Remember that working and volunteering in the world of childhood cancer may be like constantly having PMS. Emotions will sway you. That’s ok. Donna taught me to experience pain and fear fully, then move on.
  • Find balance. Maybe you can only give 10% of your energy to the YAB throughout the year, maybe you can give 100% but only for three or four months at a time.
  • Sometimes these patients grow up way too fast and are mature beyond their years, to an extreme level. Go with it. Follow their lead, just as their parents do. Also sometimes they are 18 years old and just want a puppy and time to watch Finding Nemo. Don’t assume you know what they want. Ask them. But also surprise them. You don’t have to work for Make-A-Wish to make wishes come true. A baseball game, a superhero cape, a dance class, an electronic gadget can mean the world to someone.
  • September is Childhood Cancer Awareness Month. The color is gold. Do something.

And as you walk about the race site and museum during the 10th Annual Run for Gus this Thursday…

  • Look people in the eye.
  • Rather than offering advice, just ask questions. For example, if you see someone with a Team Tyler t-shirt, simply pleasantly open with, “Tell me about Tyler.”
  • Smile genuinely and proudly at Rosie, Connor, Jake, Beckett and all the superheroes you have the honor of meeting.

Those who currently battle, those who grieve, and those who survive all share battle scars and bold joy you are unlikely to see anywhere else. I would like you to now watch this video from last year’s Run for Gus and see if you can spot the joy. http://youtu.be/UUd_VRwEFDM It’s amazing to see.

Thanks for allowing me to be a part of the YAB these past 3 ½ years. I am a better person for it.

Read Donna’s Cancer Story as told by her momma.

Dancing in the Fields of Bosnia

As published in Millikin Quarterly: 11 October 2011

Dancing for peace

Most theatre practitioners would leap at the opportunity to teach children dance, but very few would travel to the Most Mira “Bridge of Peace” Youth Arts Festival in Kevljani, Bosnia, to do so. Enter Shawn Lent, armed only with a Bosnian vocabulary consisting of eight words, yet still prepared with what she calls “the importance of creativity and hope.”

Lent was handpicked through contacts in the United Nations to teach children of an eclectic mix of cultures in this former warzone, where less than 20 years ago the Serbian military killed 300 innocents and tore apart the lives of hundreds of Bosniaks and Croats in the nearby death camp at Omarska during the Bosnian War. “In the third year of the festival, there is a little spot of joy,” Lent says, “but it still feels like the genocide was yesterday.”

Indeed, Kevljani continues to run into trouble coping with the atrocities of the past. “It just dawned on me as the parents arrived that the war isn’t that far removed, and it’s the parents’ generation.” The festival surrounds an empty and rarely used  community center that is so far failing in its purpose to bring the village together. The locks have recently been changed and the Serbs have built their own community center. The wounds of war are hard to forget.

In three-hour dance workshops held daily for different age groups, she introduced the children, teens and young adults to everything from ballet to break dancing. “In that culture, dance is used as a way to solidify your identity, along with music and costumes,” Lent says, “so it was kind of nice for the children to have the freedom of not doing their cultural dances.”

Although the children did grow together as a community as a result of the dances, Lent admits to seeing “some bullying” among them, but notes: “It was actually comforting to see typical kid banter and not nationalistic quarrels.” After a while Lent was no longer conscious of who was from what school. It ceased to matter. The cultural tension in Kevljani will not end overnight, but there is hope in the children who have fostered unity through their exploration of dance.

Lent’s passion for the community arts is ultimately what brought her to Bosnia, and according to her, that passion is “something that could only have been fostered at Millikin University.” While speaking at Millikin last year, she reflected on her time at her alma mater “doing sort of weird yet creative things. There’s a lot of taking risks and a range of experiences.”

As an undergraduate, she found that “you can really grow into yourself at Millikin,” and she did so through the help of friends and mentors like Denise Myers, associate professor of theatre and dance, who Lent compares to “a second mother” who “was always challenging you.” Myers gave Lent the push she needed to choreograph the annual children’s show, turning it into a musical theatre extravaganza complete with dancing and a choir.

After graduating from Millikin, Lent moved to an all-Muslim neighborhood in London in 2001, where she was flourishing as a youth worker and dance critic. She also was involved in the community arts which, she later discovered, was an actual field she could study.

Lent then returned to Chicago and earned her master’s degree, leading her to new heights in the British Counsel Transatlantic Network 2020 and the United Nations Alliance of Civilizations International Fellowship. The fellowship brought her to the “Bridge of Peace” festival, where she has had the opportunity to use her talent to bring a community together on a grander scale. “It’s a continuation of the dream. I was in the dance field, a great career at Millikin, but it was too insular for me. I found my dream later,” says Lent. “It was having a place for dance outside of theatre.”

by Jackson Lewis ’13

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