The Knot in Your Throat: Love, Death & Resurrection

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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.

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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………

 

 

 

 

 

 

 

 

Building Bridges Instead of Walls – Teaching & Learning in Mexico City

 

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One week post-election, I found myself bound for Mexico City, ready to teach and learn alongside my adventure colleague, Maria Busqueta. Marifer, (as I call her) hosted me in her home town, where she is a child life specialist, psychologist and educator. It was a whirlwind couple of days, as we visited the General de la Raza Hospital, learned about the Ayudarme a Sonreir ante el Cancer Foundation, The Vuela Foundation, taught a class on play techniques for adolescents, and attended a two-day conference on palliative care. Phew!

My first impressions of Mexico City and Marifer’s neighborhood: Unexpectedly cold and wet. Lovely hills rising up from the urban center. Cypress trees in plenty and Bougainvillea in bright, fuscea explosions amongst the trees and spilling down high stone retaining walls. Hilly, winding roads with speed bumps everywhere instead of stop signs. Heavy and erratic traffic. Cold mornings and nights. Marifer’s house has many levels to it, all encased in gingerbread auburn ceramic tiles. Like my home, the kitchen and living room are on the upper level, with bedrooms below. Marifer’s jaunty beagle, Duncan, lords over the front yard and threatens escape with each coming and going of a human being through the iron gate. Marifer’s mother cooks for us several times a day, filling me with homestyle Mexican fare. It is mere moments before I feel like family.

We are up bright and early my first full day there, ready to pay a visit to the Hospital Raza. Lisette Garcia Urenda, the founder of the Ayudarme a Sonreir ante el Cancer Foundation (which translates as “We help you smile after cancer”), is hosting us, and we meet her outside of the largest and oldest public hospital in all of Mexico. The sidewalks surrounding the building team with merchants hawking their wares, everything from pork roasting in a cauldron to magazines and fruit. We weave past the stalls and in through the back emergency entrance to the hospital. As we enter the foyer, several pediatric cancer patients and their families are exiting the hospital, bundled up for discharge and eager to be home. But they stop to hug, kiss and chat with Lisette. They shake our hands and offer “mucho gusto” as Lisette introduces us.

It is clear that the children and their caregivers adore Lisette. And it is easy to see why – she is all brightness, high energy and love. One teenage boy jokes for me to take him back to the United States with him. The younger children glance at us shyly.

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There are three events planned for the day, two presentations to patients and a therapeutic art activity to be conducted on the inpatient ward. The foundation grants wishes for pediatric cancer patients, and families have gathered to witness Lisette’s presentation of a wish to a young girl. They sit in tiny, child-sized plastic chairs around the parameter of an open roofed waiting area. The children sport face masks, bald heads, hats, and winter coats with good reason. It is cold.

The child is brought to the center of the room, and Lisette introduces her to everyone. I am regretting in the moment that I don’t understood more Spanish, but it seems that she is telling them how well the girl is doing post bone marrow transplant. With great flourish, Lisette hands the girl a large present. The child opens it with excitement and beams at its contents, an “alien” doll that  is apparently quite the rage. It’s hard not to note what a child with cancer might have in common with the toy. Both are bald; both might need to be isolated because of threatening germs in a hostile environment; both may need to be fed through a tube in the stomach. And, any child who has such a diagnosis may often feel like a misunderstood species hovering over the more typical lives of healthy peers.

The child hugs Lisette. The onlookers clap, and I wonder if they are envious of her.  Lisette explains to me that most of them will have a wish granted at some point, so that no child feels left out. Later, the child’s mother is crying in the hallway, sharing bad news with her social worker. Her daughter has relapsed. The bone marrow transplant didn’t take.

Lisette says that many of these children die, and that in order to do her work, she must get lots of therapy and continually study and obtain higher degrees. This is why she is a current student of Marifer’s. She does the work because when her father-in-law died, he told her that she must work for the forgotten children. She says that many of these children don’t have electricity in their homes.

The next planned event is the presentation of a natural hair wig made from five individual donations of hair. The recipient is a six-year-old girl. She is very shy and quiet. We are in a hall outside of the infusion clinic. The floors are buckled and seams of cement overflow the protruding tile. I wonder if this is from an earthquake. Nurses wear white and institutional green uniforms, donning plastic nursing caps in the same colors. I feel like I have stepped back into the 1950’s, except for the fact that they are all taking photos on their cell phones as Lisette presents the wig to the child.

Lisette speaks with the girl for quite some time. She reassures her that she needn’t speak if she doesn’t wish to, that they can communicate with their eyes. Lisette tells the child about the beauty of her heart, that the wig is just an accessory, that her beauty is not dependent on whether or not she has hair.

You must say to yourself every day in the mirror: “I am beautiful!”

The child tries on the wig and looks in a mirror provided by Lisette. Everyone poses for photos with her. In the end, her mother repacks the wig carefully in the box, and they are on their way.

Lisette leads us through a chaotic and crowded hallway to a packed elevator that carries us to the inpatient  pediatric oncology unit. In the hallway between two separate wings (one designated for solid tumors, the other for liquid), is a small but well equipped playroom. Siblings and patients mingle at child-sized tables. There are floor to ceiling shelves laden with cause and effect toys, a toy hospital, dollhouse, action figures (“for boys” says the playroom coordinator), blocks, puzzles, games and art materials. There is a large dollhouse in a corner, a kitchen play set, and several large bookcases overflowing with books. Lisette’s foundation supplies the  DVD lending library. One child sits with an adult working on a puzzle. Another plays with the dollhouse. A mothers group meets in the waiting room next door. The only thing I feel is missing is a medical play corner and sensory play materials. A flatscreen tv plays a Disney movie overhead.

Lisette has plans for an expressive arts activity. She brings us to the liquid tumor wing, into a room with six beds. Five children between the ages of two and fourteen seem excited to see Lissette and very open to our visit. The six-year-old boy is talkative and funny. After some quipping back and forth, Lisette hands out crayons and art paper to the children with a body outline on it.  But before she can begin to explain the instructions, the two year-old’s mother leaves the room, and the toddler begins to cry loudly and  inconsolably . She sits in her cage-like crib, crying desperately, reaching both arms up as if asking her absent mother to pick her up. Either that, or she is imploring the Gods to bring her mother back!

Lisette approaches with kind words, but the toddler is having none of it. She screams louder. Lisette offers her crayons and a “Frozen” coloring book. The child cries “No!” and turns away. Lisette is unperturbed. Using the surroundings, she jumps quickly into a bit of improv. The room has been newly decorated with a brightly colored mural on all four walls, ceiling to floor. It is a nature and farm scene. Near the girl’s bed, close to the floor, a mother duck swims with her three ducklings on a bright blue pond. Lisette launches into a conversation with the ducklings, turning her back on the toddler, lessening the child’s stranger anxiety by ceasing direct eye contact. She engages everyone in the room in asking the names of the ducks. She suggests the proffered names, and the little girl shakes her head in protest at each one. But she has stopped wailing and is watching Lissette intently. Lisette blocks the child’s view of the mother duck and tells a tale of the ducklings searching for their mother. She reassures the girl that her mommy will always return. We all sing the song “Five Little Ducks”. Lisette offers the coloring book again, asking, “May I put it on your bed?” The child accepts and begins to color.

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Lisette conducts the art activity with success. She speaks to the children about the variety of emotions we all have. She says they will play a coloring game based on a game called “Basta!” (enough). She takes turns calling out emotions, and each time they must grab a crayon and color within the body outline to represent where and how much of that emotion they have until Lisette yells, “Basta!” Lisette is very lively and whips the kids up into a coloring frenzy. She begins with the emotions of fear, anger, and sadness, and ends with love and joy. I am sitting with the toddler, who is methodically drawing many tiny, blue circles on each page of her coloring book, while she listens and glances at the other children. She watches closely as a nurse enters the room and approaches the six-year-old. The boy grins and says, “It’s good that you are here. My IV is backing up.” The nurse adjusts his IV, then moves over to the toddler, preparing medicine in a syringe without a needle. The toddler opens her mouth complacently to receive it without complaint.

The fourteen-year-old has gone for a walk. I had noticed when I entered the room that she didn’t appear physically ill. She has all of her hair, and is not connected to an IV. She wore a contented, cheerful expression while she chatted on her cell phone. Soon, it is time for us to move on. The teen has returned to her bed. We all pose for photos. All the children except the toddler smile. She still appears a bit somber.  I am the first to leave the room, and the teen’s caregiver follows me and grabs my arm in the hallway. She asks if I understand Spanish and begins to pour out a story to me that even with my broken Spanish, I can piece together. She is not the teen’s mother, but her aunt.

Two weeks prior, she, her two sisters and family members were traveling by car in a caravan. There was a horrible crash. The teen’s mother and father were killed. Her brother lies in critical condition in the ICU. Although the teen was unharmed, the tests she underwent at the hospital revealed that she has cancer. She had only just learned of her parents’ deaths the day before. I struggle to match that news with the image of the calm, smiling teen I’d met. Was she in shock? Denial? Is it her Faith in action?

The aunt shows me photos on her phone of her family, as well as a video about a teen whose mother dies. She says she is a Jehovah’s Witness and believes that we will all see our loved ones again after death. I tell her that I will carry her family in my heart.  I think about how much good healthcare in hospitals involves helping patients and families to tell their stories. This seems true in every country I visit. And in every country thus far, families don’t hesitate to share their stories with a stranger. Perhaps it is easier to tell a stranger. But it is more than that. This woman, and others I have met, seem compelled to share their narratives, as if we couldn’t stop them if we tried.

Leaving the hospital, I am sad, exhausted and hopeful in equal measures. Lisette’s work makes a mark. Listening makes a difference. The children won’t be forgotten by us. Shared stories tear down cultural walls.

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