In the face of mounting pain and fatigue from an autoimmune disease that is killing her, a 34-year-old Fair Haven schoolteacher and dancer packed years worth of hard work in 2013 to reach more young lives in the limited time she has left.
The teacher, Mnikesa Whitaker of Fair Haven School, started out the academic year with bad news: When she gets a long-awaited lung transplant, she will have to have a permanent feeding tube.
Whitaker (pictured) plunged forward into her 10th year teaching at Fair Haven, a K-8 school that welcomes a steady stream of immigrants and newcomers to town. After school, she helped 34 girls develop grace and confidence through BalletHaven, a free dance program she founded for students in grades 5 to 8.
This past Friday marked the end of the semester—and a milestone in a fight to stay alive in the face of a debilitating disease.
“I should have died a long time ago,” according to doctors’ predictions, Whitaker said. “I’ve defied the odds so far.”
“This year, the monsters and shadows did not win.”
She jotted down the official scoreboard in an email: “Kesa: almost 35. Monsters: 0.”
(Click on the play arrow to see some scenes from 2013 in a documentary short by Melissa Kane.)
Whitaker suffers from systemic scleroderma, a rare disease in which the body’s immune system attacks healthy connective tissue. It is destroying her heart, lungs and gastrointestinal system. She now has just 36 percent of her lungs remaining. The illness is chronic, terminal, and coupled with related diseases that are eating away at her muscles and cutting off blood flow to her fingers.
After undergoing two years of chemotherapy to no avail, she is now awaiting a lung transplant. Her afflictions “make the simple act of living perpetually painful,” she said, at a 9.5 or 10 on a scale of 1 to 10.
Whitaker’s year began by ushering a new crew of dancers to BalletHaven as the program entered its second full year. After a rigorous audition process, she chose 34 girls to become dancers, committing to stay after school twice a week and dedicate themselves to keeping up good grades and a dancer’s discipline.
In March, Whitaker choreographed a modern dance to be performed with visiting hip-hop violinist Daniel Bernard Roumain.
At night and on weekends, she took online classes at Loyola Marymount University, working towards her master’s in reading instruction.
Though she had little extra energy to devote outside of school, she was motivated to get the degree by a promise she made to her grandmother.
A Promise To Grandmother Flora
Whitaker represents the fifth generation in her family to teach.
“I feel like it’s in my blood,” she said.
Her mother’s mother, Flora P. McCleod, led an effort to integrate the public schools in Mississippi’s Perry County. The superintendent chose one black teacher and one white teacher to switch schools. McCleod, who was African-American, braved taunts and threats by agreeing to teach in an all-white school. After she made the switch, the KKK burned a cross in her yard. She kept teaching there until it became clear that her family was in danger. She was forced to resign.
Whitaker went to see McCleod shortly before she died at the age of 92.
“Promise me you’ll get your master’s and your PhD,” her grandmother told her.
Whitaker worked hard to deliver on that promise. She has just two more classes left at Loyola until she earns her master’s. Her GPA is 3.96.
Whitaker keeps a photograph of her grandmother, as well as her family tree, on her classroom wall.
“When there are moments when I want to give up,” she said, she thinks of her grandmother’s courage. “I stand on the shoulders of giants.”
Whitaker made it through the school year, then had a heart-to-heart with a friend about her master’s program. She had sought to keep taking classes over the summer, but she realized she needed to rest.
She used the break to prepare for another whirlwind school year. Whitaker teaches a reduced load: When she went through chemotherapy, she had to drop the number of kids she teaches below her past level of 130. She now teaches reading intervention to 50 kids in grades 6 to 8.
A Declaration Of Independence
When September rolled around, Whitaker slapped a poster on her classroom door. It read: “BRAVE.”
Whitaker kept walking through that door this fall even as she endured several episodes of bad medical news. Three days into the school year, doctors made an unwelcome announcement about the lung transplant she has been waiting for: Doctors told her that after the surgery, she would have to use a feeding tube.
For how long? she asked.
Indefinitely, came the reply.
Then she found out she would have to start using an oxygen tank to breathe. She started researching “cute oxygen tanks” and tried not to think about it.
She reunited her dancers and continued choreographing new pieces for them, including one in which she asked her girls to summon the spirits of their grandmothers in honor of Hispanic Heritage Month.
And she kept teaching.
Just before Thanksgiving, a medical emergency landed her in the hospital and forced her to miss two weeks of school. The episode left her feeling “fractured” and “uncomfortable,” she said. “I needed something to feel liberated and free.”
So she cut off her long, curly hair. “I wanted to express this defiance I feel towards traditional narratives about beauty and womanhood. And towards my disease. I want my girls to see this and know there is another way of ‘being’ in this world that doesn’t include being bound by the dominant images they see. They can change the conversation.”
The haircut, she said, “was both a personal and public declaration of independence.”
“I Need Your Help”
With that declaration, she headed back to school—and into the arms of her students, some of whom had cried when they found out she was gone.
One recent morning just before the holiday break found her teaching a group of 8th graders, most of whom have been her students for three years.
A message on the board announced that the class would focus on building “stamina” while reading. Students’ progress in staying on task was mapped on the wall in pink sticky notes.
The literacy lesson diverged when she inadvertently knocked a book onto the ground.
“You feel cheap?” said an 8th grader, repeating a phrase kids toss around when someone does something embarrassing.
Whitaker seized the chance to address a pervasive mentality among middle-schoolers: That it’s humiliating to mess up.
“Mistakes are part of actually growing,” she told them. “If you never make a mistake, I feel sorry for you.” She pointed to a poster of Abraham Lincoln, with this message: “Failed. Failed. Failed. And then ....”
“I shouldn’t have said anything. I’m sorry,” protested the 8th-grader in the middle of his teacher’s speech.
Whitaker kept going strong: If you’re too afraid to mess up, it will hold you back, she argued.
She picked up the book again and began reading aloud. Students jotted down notes in a reading journal about the story.
At the end of class, she paused mid-instructions and began coughing.
Between coughs, she asked a student named Jonathan Encalada to take over giving instructions.
“I need your help,” she told him. “Say it louder, please.”
Jonathan rose to the occasion.
Whitaker has learned to control it, but she sometimes has to pause for up to a minute to endure a bout of dry, unproductive coughing. That’s her body’s way of “gasping for air,” she explained, sitting by a space heater to keep warm between classes. (Her illness has affected her circulation.) The coughing is a symptom of pulmonary fibrosis, she said—a sign that her lungs are splintering and dying. It’s a rare outward symptom of what she describes as constant inner pain.
Kids who know her have learned to give her a minute before she stops coughing, or start reading. Others step in and give her advice.
“Ms. Whitaker, breathe,” her dancers tell her.
“They don’t understand how profound that is,” she said.
Whitaker wears a pendant around her neck listing the afflictions—scleroderma, pulmonary fibrosis, myositis, gastroparesis—that have weakened her body. Her daily movements have been curtailed: Doctors have told her to stop doing stairs, and she can’t dance like she used to. But her presence, and her message to kids, conveys strength.
“Be a problem-solver,” she told one nervous student who was trying to figure out a classroom assignment. (He figured it out on his own shortly thereafter.)
“I don’t want them to buy into learned helplessness,” she explained. “You’re only as weak as you allow yourself to be.”
“Be a problem-solver” is a refrain she uses often with her dancers at BalletHaven. Can’t find a hair tie? Be a problem-solver. Don’t have the link for the Youtube clip to learn the next dance? Be a problem-solver. The effect is both demanding and empowering.
Whitaker, who has been dancing since 1991, once dreamed of being a professional dancer. That dream was cut short in 2001, when she began to get very sick. She dedicated her life instead to passing down the dance to others.
As she auditions new dancers, she makes it clear that BalletHaven is serious business. Kids have to write essays, observe a dance session, dance onstage, and do an interview as part of the audition. Every year, she makes all the dancers reapply to get into the program.
“An Important Person In My Life”
The strength of the two-year-old program—and the extent to which Whitaker has changed young lives—was apparent the other day as dancers gathered for the latest round of auditions. Seventy students arrived to Fair Haven’s auditorium to try out for 35 slots. Each dancer got a number to put around her neck.
Students took turns learning a new dance onstage and observing quietly from theater seats.
Jonna Bacote (at center in photo), a founding member of BalletHaven, teared up as she recounted how much Whitaker has meant to her.
Jonna joined BalletHaven two years ago, when she was in the 5th grade.
“I’ve learned a lot,” she said. “I used to have anger issues.” When she couldn’t get the steps right, she said, she would succumb to frustration. She said Whitaker taught her to “just calm down and redo your steps.”
She said Whitaker has helped her stay more focused in school, too. In 6th grade, she was failing math class. “I didn’t want to do it.”
“If you don’t do your math, you’re not going to do ballet,” Whitaker told her, she recalled. “I don’t want to see another D or an F.”
That got Jonna’s attention. Whitaker bought her a binder and helped her get organized. Jonna got her grades up and returned to the dance floor.
Whitaker “sets a high example” for her dancers, she said. And she follows through with support: “If I ever need her, if I need a pep talk, I can call her.”
When Whitaker missed two weeks of school this fall, Jonna said, she and her best friend cried.
“God forbid she not come back, or she wouldn’t be well enough to teach again,” she said, her eyes tearing up again. “She’s an important person in my life.”
“My Second Mom”
Whitaker’s reach extends beyond Fair Haven School: Several dancers who are now in high school returned last week to help Whitaker select the next round of dancers for BalletHaven.
“She’s like my second mom,” said Jousebeth Lopez, 14, a BalletHaven alumna now studying at Wilbur Cross High School.
When she met Whitaker, she said, “I was lost and I didn’t know what to do.” She said she was crippled with shyness. “I thought nobody was listening. I thought people were just talking about [me behind] my back.”
“I thought because of my weight, or my body, I was not confident” to wear the kind of clothes she wanted. “I thought my body wasn’t good enough.”
Whitaker “took me from there. She opened my eyes,” Jousebeth said.
“The only way I could say what I was thinking, was feeling, was through dance.”
Ashley Rodriguez (at left in photo), 15, another returning alumna, said Whitaker “helped me to never give up.” And she helped her gain confidence.
“I used to be so shy. Now, I’m just out of my shell.”
Through BalletHaven, Whitaker aims to build strong young women who have “discipline and dedication.” She said that mission has fueled her fight to stay alive.
“I cannot die. I have shit to do,” Whitaker said.
She is determined to develop BalletHaven to a point at which the dancers themselves can become teachers, passing down the dance to younger girls. And she has to finish her master’s. Not to mention her PhD.
In January, she’ll turn 35 years old.
That feels like a milestone, she said, “because I’m not supposed to keep having birthdays.”
As she headed toward the holiday break, Whitaker stopped for a moment to reflect on the past year and declared herself proud.
“Proud I’ve made it this far, and proud that I was able, however briefly, to turn back, see and acknowledge that for every single day this year, I showed up,” she wrote in an email. “I faced every monster and shadow. Knowing that when they are victorious, it will be the end of my road; they will try to use this illness to take my life. So though they continue to press in ready to attack, for another year—THIS year—the monsters & shadows did NOT win. :) And that makes me very, very proud.”
Previous men and women of the year:
2012: Diane Polan, Jennifer Gondola, Jillian Knox, Holly Wasilewski
2011: Stacy Spell
2010: Martha Green, Paul Kenny, Michael Smart, Rob Smuts, Luis Rosa Sr.
2009: Rafael Ramos
2006: Shafiq Abdussabur