The Knot in Your Throat: Love, Death & Resurrection

Thalia self portrait

Some of us are blessed with angel guides here on earth. I met mine, Thalia Georgiou, 22 years ago. At the tender and ancient age of 15, Thalia peered over a precipice and saw her possible demise.  A tumor snaked around Thalia’s carotid artery, threatening to cut off the blood supply to her brain or empty her life’s blood should a surgeon’s hand err.  After receiving a death sentence in her home country of Greece, she arrived in New York City to prove her doctors wrong. She came for chemo to shrink the tumor, surgery to remove it, and radiation to prevent its return. She came to survive the odds.

Flashback — 1998 —

I get to know Thalia’s mother before I make inroads with the teen. Her mother attends a parent respite group that I co-lead with a social worker. Thalia prefers the jewelry making classes in the adult recreation program to the children’s recreation area where I work. But one day, she rolls her IV pole into the sun-drenched playroom and asks me for some time — in private.

As I close the door to my tiny office, Thalia reaches into her knapsack and hands me a clear, plastic bag.  “Open it,” she encourages me. I obey her and find a long braid of hair encased within. “Touch it. Smell it. Feel it,” she says.  “Look at how it’s red on the top and brown underneath. I dyed it once. See all the beautiful split ends. When I had hair, I hated split ends. But they are so beautiful now. Sometimes I tell my mom, ‘Get my hair. I want to sleep with it.’ And I curl up with my hair on my pillow.” As I follow her instructions and bring the braid to my cheek, she watches me expectantly, a faux panther tattoo adorning one side of her naked scalp.

Thalia puts the hair carefully away. In its place, she brings out several photo album pages. Holding them on her lap, she slides her chair close to me and points. “This is my neighborhood taken from my best friend’s house. You can see my house from here. This is the roof. See the little park at the end of the street, and the trees? It’s such a pretty street.” She shows me photos of boys, describing them as both friends and boyfriends. Thalia confides in me that one of them looks like a boy here at the hospital. “You know I was thinking. I’m away from home and very sick. He’s here, very sick. Why not?”

There are pictures of her best friend, a lovely girl who “took some of my boyfriends, but that’s okay.” In one shot, she and Thalia are at the airport on the day that she left for New York City.  The friend is clearly distraught and tearful. I say, “I can almost imagine what it must be like seeing you off, not knowing if and when she’ll ever see you agin., feeling helpless to do anything for you.”

“Yeah, and how do you think I feel?!” she retorts. “A million miles away from home, alone, facing death.”

A small gash appears in my heart.  “Are you facing death?” I ask.

“Well, when I came here they said that without treatment, I’d be dead in four months. Then they said that with treatment … well, they said that even if my tumor responds to treatment that I only have 30% chance anyway.”

“Do your friends know this?”  I am wondering how she is coping, who she is leaning on.

“Well, I told them all that I was dying right away.” Thalia smiles gleefully. “And you should have seen all the attention I got!”

I note that amongst all of the pictures, I see none of her father. She explains that she has drawings of him. She hands me a sketch pad. “I’ll show you my dirty picture first.” She turns the pages to a pastel drawing of a graceful, naked woman. A pencil drawing of a woman in lingerie, a handcuff dangling from her finger. And two drawings of her father,  profiles of him relaxing with music, with one shoe off,  and another at the beach. sporting long, curly hair and a hairy pot-belly.

 

There is a self-portrait entitled Mirror Image, August 1997. A slightly wary version of Thalia in pencil, braid intact, tilts her head to the left,  her eyes trained to the right at her own image in the mirror. I don’t notice any trace of the long scar from her initial surgery that presently runs along the left side of her neck, and so I ask, “Were you ill yet when you drew this?”

It’s as if she knows what I am asking. “My head was turned — see — no scar.”

We pour over many more drawings, each with a story to tell. The museum walk continues when Thalia holds out a large, heavy ring. It is silver with a jade stone. “This was given to me by a friend of my mother’s a long time ago. When I think of this ring, I think about my whole life, the mistakes I’ve made, the things I’ve learned from them. You know, when I came to the hospital, I really changed. I am not the same person I was before. And three days after I got here, the ring broke. It was so strong that a train could run over it. But look, I can’t wear it anymore.”

The last thing she digs out of her bag is a handful of three Greek audio cassettes. I ask her if she wants me to borrow them and listen to them at home. “Not exactly,” she answers and pulls a cassette player out with a flourish. She cues up a song for me and plugs me in. She translates for me as the music sears my eardrums.

“It’s like this. When there is a knot in your throat, and the ceiling is spinning, you feel your tummy is going to be ripped open. This is love, and it is death and resurrection combined, and it goes on and on and on.”

That hour spent with Thalia so many years ago serves as a permanent beacon in my work and life. Her humor, honesty, wisdom, and bravery continue to inspire me. She reached out to me on FaceBook when she turned thirty, and we remembered and laughed together, musing about the horror of that year, and the hope.  She returned to Greece after treatment and now makes a living designing and creating jewelry, clothes and wedding dresses.  She developed the building blocks of these skills while in the hospital. She was the kid who used her radiation face mask as a display model for homemade earrings and necklaces. She could turn torture into beauty – and she still does.

thalia mask

Thalia was married this past week to her soulmate at a castle in Italy. Here she is in the wedding dress that she created, in the life that she resurrected.

 

 

 

 

 

You can visit her Etsy shop and purchase her amazingly original designs at https://www.etsy.com/shop/THAGartDESIGN/items and follow her on FaceBook at https://m.facebook.com/ThagArtDesign/ and https://m.facebook.com/bloomingmusejewellery and her Instagram accounts are Thag.Art.Design and blooming_muse_jewellery. She models all of her works of art. Note the ring in the lower right-hand photo………

 

 

 

 

 

 

 

 

Playroom Design Made Easy

 

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Auckland, New Zealand

In my career as a child life specialist and educator, I have seen many hospital playrooms throughout the country and across the globe. In my mind’s eye, I have an idea of what makes a playroom wonderful, combining the best parts of every playroom I have ever seen. My imaginary perfect playroom is a large open space, filled with natural light, a warm, cozy atmosphere, comfy furniture, child-sized sinks and work areas, and a working kitchen. The toys are within reach so that all children can

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Mural in Mexico City

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Playspace in Mexico City

play freely. There is a well stocked medical play corner. There are safe spaces for infants to have tummy time and room to crawl. There are climbing bolsters for toddlers and a wheelchair accessible playhouse for preschoolers and young school-aged children. There are riding toys and sensory play tables. Ping pong and pool tables are there for teens and caregivers to gather around.

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Czech Republic

The best part about this imaginary playroom is that it is staffed with child life specialists, or hospital play specialists, who have been trained in play theory and play techniques, including the child-centered approach and the Floortime approach. They have also undergone training in racial literacy, and speak many languages. There is cleaning personnel on staff who disinfect toys and surfaces as needed. The playroom has daily programming that includes expressive art. medical art, and medical play. Outdoor playspace is available for children and families facing lengthy hospitalizations.

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Japan

In order to make my fantasy one step closer to reality, I designed the Vilas Playroom Assessment Rubric VIPAR to guide hospital staff in creating new play spaces or revamping existing ones. I recently updated it with the help of Meagan Roloff from the Association of Child Life Professionals (ACLP). It is a fillable pdf document that you can download and use to assess your current playspace, or give you ideas for how to design new space. Many hospitals have funding from big corporations to build dramatic and eye-popping play spaces in hospitals. But it isn’t always about the glitz. Sometimes it is the simplest of things, like the sensory room filled with homemade sensory toys in Japan, the custom designed foot high cushioned wall to protect an infant/toddler area from exuberant older kids in New Zealand, or a set of wooden blocks for children to create their own miniature worlds. A doll bed and medical supplies to encourage medical play in Iceland. A wooden playhouse whose door can accommodate a wheelchair and IV pole in New York City. And often, it is about the policies, programming, and training of the staff that make the space a truly child-centered place of healing.

Think outside the box and see where your imagination takes you. And please, drop me a line to let me know how it turns out — I would love to see more photos from around the world!

 

 

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Bethlehem

 

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Iceland

 

 

Free Talk: Medical Play Therapy & Child Life

Bank Street College Library

Presents…

Library Salon #15

Friday, March 9, 2018

5:30 to 7:30 pm

A panel discussion with child life practitioners
and alumni contributors to:

Moderated by: Troy Pinkney-Ragsdale, MA, CCLS, has over 25 years of experience in the field of Child Life, including directing several child life programs in the tri-state area. She has served as the director of the Child Life Masters Program at Bank Street College since 2004. She has been a member of the Association of Child Life Professionals, served as the Co-chair of Graduate Accreditation Task Force and member(2012-2014),  served as Director on the Board (2015-2017) and has been a member of the Education and Training Committee for many years.

Panelists:

Lawrence C. Rubin, PhD, the editor of the Handbook of Medical Play Therapy and Child Life, is a professor of counselor education at St. Thomas University in Miami, Florida, and an online lecturer at the University of Massachusetts. Dr. Rubin is a practicing psychologist in Fort Lauderdale, where he specializes with children, teens, and their families.
Jon Luongo, MS, CCLS, is a Bank Street graduate, past adjunct instructor, a delegate with 1199 Healthcare Workers’ Union, and a child life specialist at Maimonides Medical Center in Brooklyn, NY. He began his career in healthcare as a performer in the Big Apple Circus Clown Care Unit in 1997.
Suzanna Paisley, MS, CCLS, is a Bank Street graduate, a parent of two young children, and a child life specialist at Children’s Hospital Colorado. She has lectured on trauma processing with children of all ages at national child life conferences.
Deborah Vilas, MS, CCLS, LMSW, is a Bank Street graduate, a current faculty member, a writer and a public speaker. She has taught play techniques to child life students, hospital play specialists, nursing students, social workers and psychologists in 6 countries around the world.

Patty Weiner, MS, is a mother and grandmother whose career spans over 35 years as a child life specialist and educator. She is the founding director of Bank Street’s Child Life Program and is an educational consultant for The Making Headway Foundation in NYC.

Library Salons are a series of informal lectures, panels, and group discussions
held after hours on Friday evenings.Refreshments Provided#BankStreetLibrarySalon

Copyright © 2018 Bank Street College of Education, All rights reserved.

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Caring in Cameroon

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When we observe anything in this world, our perspective is tightly interconnected with our cultural context. As we grow from the egocentrism of childhood to a more expansive view as adults, we may see that not everyone comes from our circumstances, shares our belief system or our way of doing things. At the age of 52, I was a late bloomer in my foray into other cultures. But travel to New Zealand and the Palestinian Territories in 2014, and speaking at the first International Summit on Pediatric Psychosocial Services began a process that continues today. I have learned that “Child Life” has many names and forms across the globe.

As I cast a wide net with my blog, trying to see how I can do the most good, it occurred to me that I could use it as a platform for getting out the good word about what people are doing in other countries to make life better for children in and out of hospitals. So every so often, I will choose a country and share the story of a colleague who is holding the torch of kindness to dispel the darkness of fear and pain for sick children.

My first spotlight is on Macdonald Doh, my honorary son and a head nurse in the Emergency Department of the Yaounde Gynaeco-Obstetrics and Pediatric Hospital in Cameroon, Africa. I met him at the CLC Summit where he represented his country along with 45 delegates from all over the world.  In Cameroon, there is one doctor to every 10,000 people, as compared with 2.4 doctors per 1,000 in the USA. Continue reading