“I believed in the possibilities of healing despite what the doctors said. I held on to hope,” Kesi* shared.

Kesi’s diagnosis at age twenty-eight threatened to derail her childhood dreams of performing. When Kesi was four years old, she used her jump rope handle as a mic and sang for anyone who would listen.

Performing a jingle in her sixth grade music class opened a door she was excited to walk through. Her teacher asked her to stay after class and sing scales. “Kesi has talent,” her teacher told her parents. “I want to put her in a singing group that performs Broadway tunes at big attractions.”

* Her real name is used with permission.

Being on Stage Was My Happy Place

Performing in talent shows and competitions during middle school and high school ignited a love for singing and dancing. “Being on the stage was my happy place,” Kesi shared. With instruction at a dance school during her teen years, she believed in the possibilities of becoming a triple threat (singing, dancing, acting).

An opportunity of a lifetime intersected her studies in political science at Rutgers University. She took a year-long break from her studies while she toured the East coast as a backup dancer for a female R & B group, Creme, at LL Cool J’s concerts. Midway through the tour, a diagnosis of asthma explained why she often felt out of breath during the shows.

Couldn’t Catch My Breath

Kesi returned to her studies at Rutgers, but couldn’t turn down an opportunity to sing and dance at bar mitzvahs and parties on the weekends with a top entertainment company.

When she felt lightheaded, began coughing and then throwing up during a performance in Brooklyn, New York on New Year’s Eve 2000, she knew something was really wrong. “I couldn’t catch my breath. The EMT’s gave me oxygen when I told them I had asthma.”

Determined to take her passion for singing to the next level, Kesi recorded a demo with a producer in New York City. After a recording session, he asked her, “Do you have asthma? When you take deep breaths, I can hear it in the mic.”

Don’t Think You Have Asthma

After graduating from college, Kesi worked at Merrill-Lynch as a Human Resources Appeals Specialist in the New Jersey office at the time of the 9/11 attacks. Even though she wasn’t hurt, seven employees from the Merill-Lynch office in the South Tower perished.

No matter how much she loved Manhattan and all the opportunities there, the city she once loved changed to a place that was on constant high alert. A visit to Atlanta confirmed her desire to live somewhere safer. Once in Atlanta, she signed on with a dance company.

During a rehearsal, Kesi slid down on the floor, was breathing heavily, and felt lightheaded. She immediately went to a hospital where she was examined by a nurse who listened to her lungs. The nurse said, “I don’t think you have asthma. Your lungs are fine, but something’s happening in your throat. I think you have tracheal stenosis.”

Disease Was Progressing

An ENT doctor confirmed a diagnosis of tracheal stenosis. Kesi was twenty-eight years old. While relieved to have an accurate diagnosis, she was hopeful the surgery would restore her ability to breathe easily. Two months after her collapse during rehearsal, Kesi underwent her first tracheal dilation surgery to widen her airways. She believed in the possibilities of healing.

Because she felt great after the surgery, she returned to singing and dancing. Ten months after the surgery, Kesi began feeling out of breath often. Another tracheal dilation surgery, but this time it only lasted for four months.

Another tracheal dilation surgery. This one only lasted two months. Now fear was setting in. “My ENT doctor knew my disease was progressing, so he recommended a more permanent solution: tracheal resection.”

Signed a Release

Before the surgery, Kesi signed a release that outlined the risk of loss of voice, a raspy voice, a tracheotomy, and death. Confident this surgery would restore her health, she never thought things could go terribly wrong.

Friends and family gathered in the waiting room during what should have been a three-hour surgery, but it lasted six hours instead. “When I woke up, no one was smiling. Just the opposite. They looked concerned and one friend was crying,” Kesi remembers.

The nurse instructed her not to talk and handed her a notepad so she could communicate.

No Shape to Work

A few days later, she woke up in intensive care. A machine was helping her breathe and tubes were everywhere. Frustrated and not understanding what had happened to her, she yanked the tubes out. She discovered her chin was stitched to her chest.

When her mom visited, Kesi wrote “What happened to me?” Her mom replied, “You’re fine. You’re healing.”

Her doctor assured her the trach tube would be taken out in a couple of weeks when she healed.

When she went home seven days after surgery, Kesi had to take FMLA as she was in no shape to work. In fact, she still needed a catheter, a feeding tube, an IV, and oxygen. A nursing service and respiratory therapist visited her daily for treatments.

Wonder Why She Couldn’t

While in the waiting room for her month follow-up appointment, she observed another patient who covered up her trach tube and was able to talk. This made Kesi wonder why she couldn’t do that.

Using her notepad, she conveyed her question to her doctor: When will the trach come out? Her doctor replied, “We should go back to surgery.”

Kesi’s dad was livid with her doctor’s response. “She just had major surgery. Why does she need another one?” he asked. Kesi remembers her doctor avoiding eye contact, her dad’s questions, and her question about talking with the trach tube.

Believed in the Possibilities

Once home, she reached out to her support group and shared her concerns about the doctor’s comments. “I was beyond upset and discouraged. Something was really wrong. I was mute, and I realized I could be mute for the long term.”

Desperate for answers, Kesi met with a specialist who said, “When that doctor did your surgery, he caused your trachea to close completely. That’s why you aren’t getting air through there. Removing the trach isn’t a possibility. Without it, you wouldn’t be breathing.”

“Despite what that doctor said, I believed in the possibilities of healing. I held on to hope,” Kesi remembers.

Live with a Trach and Never Talk Again

Her resolve wavered over the next few months. It was time to face the reality that she likely would have to live with a trach and never talk again. A severe depression set in. Her family lived far away and was unable to be with her. She cried all day, every day, as she felt so alone.  Once an outgoing, social person, Kesi felt isolated because she couldn’t speak. Calling friends to chat wasn’t an option anymore.

After six months, Kesi became tired of sitting at home, crying by herself. She reached a turning point: she HAD to stop wallowing in her misery.

A decision to pursue a graduate degree in Public Administration filled her with hope. Since she still couldn’t talk, she wrote her questions on index cards and handed them to the professors. A tutor taught her sign language. Slowly, Kesi gained a new sense of purpose.

Started a Non-Profit

Her graduate program academic adviser encouraged Kesi to share her story. Realizing her story had power and encouraged others to fight to overcome, Kesi started a non-profit called the Tracheal Stenosis Foundation. It offers support groups, works with patients and doctors, and holds a fundraising social event every two years.

“I believed in the possibilities of making a difference in the lives of those who are diagnosed with tracheal stenosis.”

Best Day of My Life

While she was in grad school, a specialist in Boston took Kesi’s case with a determination to re-establish her airways. Surgery every six to eight weeks to laser the re-occurring scar tissue or replace the trach-tube in her trachea resulted in fifteen surgeries over a two year period. After two years of having a trach tube, her surgeon took it out and put in a T-tube.

Every day during those two years, she woke up and tried to talk. Then one day, she covered the T-tube and a noise came out when she spoke. “It was the best day of my life. I was so excited!”

By the time Kesi graduated with her MPA, she’d had twenty-four surgeries.

Hasn’t Stopped Her

Wanting to use her newly acquired knowledge and skills, Kesi applied for a Human Resources position. She worried they wouldn’t want her. “They won’t hire me. I can’t speak.”

That company did hire her. Her voice, though raspy, hasn’t stopped her over the last twelve years. She’s taken on more and more responsibilities and recently accepted a position as vice president of Human Resources for the company.

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“This journey has been tough,” Kesi shared. “I’m thankful I took advantage of opportunities to sing and dance when I was young. Not being able to sing bothers me the most. I lost a big part of who I was.”

Kesi could focus on what she lost, but instead, she believes, “Overcoming is gaining a strength I didn’t know I had.”

Perspective is everything! How have your struggles changed your perspective for the better?