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………

 

 

 

 

 

 

 

 

Someone Who Looks Like Me

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Early morning this past Tuesday, I squeezed onto the uptown #5 train on my way to the Immaculate Conception School in the South Bronx. The morning rush crowd swept me off the train at 149th Street and Third Avenue, and up the steps to a busy thoroughfare, where several streets spoked out in various directions. I made my way up a hill, heading north and west to where the school backed up against a Catholic church. The main school entrance opened onto a set of stairs, leading to a hallway where a receptionist at a small school desk pointed me up another two flights to the science room. Paper signs with arrows and CAREER DAY in bold print showed me the rest of the way, and I climbed the freshly painted cement steps, taking in the familiar smells and sounds of institutional cooking and children’s voices echoing through the high ceilinged halls.

The principal, Sr. Patrice, a longtime friend, and an avid Yankee fan, set down her coffee to greet me with a warm hug. My life partner is the school’s Board president, and this was not my first visit to the grammar school that holds a great reputation for its students continuing on to high school and college. In a neighborhood with highly segregated, low resourced public schools, this school provides an alternative pathway to children of all denominations.  Several other visitors, business people and alumni, sat at the round work tables on an assortment of chairs and stools, sipping coffee and nibbling at sweetbreads that I was thrilled to see. Breakfast had eluded me and I was starving.

I looked up from my croissant to see my friend enter the room. “Hey, Cassandra!”  I waved her over to my table. Cassandra is the executive director of the 163rd Street Improvement Council. They provide housing and supportive services for people with a variety of special needs. Cassandra is a fan of women’s basketball and attended Liberty games at Madison Square Garden in seats next to my partner. I’d met her when she invited us to her 60th birthday party, and we’d been Facebook friends ever since. I didn’t know her well, but I thought of her when I’d accepted the invitation to career day. At a previous career day, I’d noticed that there seemed to be a disproportionate amount of white speakers given the fact that most of the students were kids of color. I reached out to Cassandra in a transparent way, telling her I thought the kids might do better seeing more adults who looked like them. (See The Danger of a Single Story.) She accepted immediately, and here she was, excited and nervous about addressing the kids.

Sr. Patrice had us each booked in separate rooms with half hour talks over a two hour period. I began with the fifth graders, who were eager to learn about the wonderful profession of Child Life. I began by asking them how many of them had ever been hospitalized. Every hand in the room shot up, making me think about the healthcare disparities in poorer neighborhoods — chronic illnesses such as asthma being a common scourge.  I shared some stories about playing with sick children and showed them the ultimate child life fact — how once an IV is inserted, the needle retracts into the plastic holder and only a flexible plastic tube called a catheter remains in your vein. I brandished a real IV start to demonstrate, causing several kids to cringe in fear. Reassuring them that no one would get stuck with a needle by me, I passed around the catheter for them to examine, showing them how it was so small that a mouse could probably drink a milkshake through it. They brimmed over with questions.

  •  What do you do if a child doesn’t want to play?
  • Are all the kids really sick, or do some of them have like broken bones?
  • Do you sometimes feel sad?
  • What do you do when it is really hard?
  • What do you do if a child doesn’t get better?
  • How do you become a child life specialist?

Our time together had one dramatic interruption when a bird flew into the room and many of the children panicked and lept shrieking from their chairs. Sr. Patrice came to see what was causing such a commotion. Her calm and authoritative presence quieted the room so that we could continue. She gave me credit, saying how lucky it was that a child life specialist was there to calm the children, but I knew that she was the one with the magic powers.

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My next gig was a classroom of sixth graders. They’d been hosting several speakers before me and were a bit wound up by the time I arrived. So I got them out of their seats for some stretching before beginning my talk. This group had some questions, but they were more interested in telling their own stories of hospitalization. I listened as several children quietly shared about their medical encounters, which sounded scary and unpleasant. Some of them had met a child life specialist, but many hadn’t. One girl said, “Child life needs to come to Lincoln Hospital.” That was a great segue for me to talk about why the profession needed more people like them, who understood what their communities needed.

After our time with the kids, Cassandra and I met up back in the science room and trekked down the hill to part ways, she to her car and I to the subway. Her enthusiasm and joy for the day were clear – She’d had a blast with the students. We celebrated and documented our day by posing for a selfie in front of the church. IMG_5559

Two days later, Cassandra reached out on Facebook with this post:

Today I got a call from a parent of one of the kids from yesterday (Some of the kids asked for my business card). She called to thank me — her 14 year old came home excited about this person who was passionate and accomplished and “looked like me.”

I am so grateful to have been used in this way.

I am thinking that next year, I need to invite more people of color to join me, including child life specialists. Anyone want to join us? In the meantime, consider a  visit to your own neighborhood public schools to spread the good word and ignite the fire in the next generation of child lifers.