It was Monday morning, August 24th of 2015, when 28-year-old Katie Burke woke up feeling something wasn’t quite right, like maybe she had eaten too much salt. Her face felt different, bloated. She looked in the mirror and thought, That’s weird. I must be having an allergic reaction to something.
Katie teaches yoga. She’s energetic, young, and naturally beautiful with tanned skin, bright blue eyes, long dark brown hair, and a gigantic white smile that spreads across her face. She’s an elite, sought-after yoga and fitness instructor who teaches over 600 people per week and is sponsored by Lululemon, Health-Ade Kombucha, and Runa Tea.
That Monday, Katie was teaching four yoga classes for CorePower Yoga in Del Mar and Point Loma so she didn’t have time to dwell on the heavy feeling in her face. “I just thought my face was swollen.” As the day went on, Katie’s lower lip began to numb. But she kept teaching. By 8:30 p.m., during the middle of teaching her fourth and final class, she knew something was seriously wrong. Every time she went to say, “Forward fold,” a repeated command in yoga, she couldn’t pronounce the F’s. She could no longer control her lips and thought, This is the weirdest thing.
Lisa Hiller, an emergency-room doctor and friend, was in the lobby of the Point Loma studio waiting for a class to start when Katie’s class got out. Katie pulled her aside and asked, “Can you take a look at my face?” Hiller could see the difference between one side of Katie’s face and the other, but it was subtle. Katie revealed she couldn’t talk very well and mentioned the thought of having an allergy attack.
Dr. Hiller thought Katie’s face didn’t look like she was having an allergic reaction, nor did it look like she was having a stroke. “It looks like the beginning of Bell’s palsy. If you wake up in the morning and this is worse, you need to go to the ER.”
The word “palsy” stopped Katie. “Wait, what? What the hell? No way,” Katie didn’t know much about Bell’s palsy but knew that “palsy” meant paralysis.
Once home in her Pacific Beach rental, Katie called her boyfriend, Anthony, and let him know her face felt “tingly and numb.” It was late. She could breathe normally so the plan was to go to the doctor in the morning. She believed if she just popped a Benadryl and got a good night’s sleep, everything was going to be fine.
But it wasn’t.
When Katie woke up the next morning, she was worse. She looked in the mirror and said, “Holy crap, my eye is not blinking!” The right side of her face had fallen. She couldn’t get it to move.
Katie had to train a client in University City at 9:30. She texted her client to warn her that her “face was swollen” but would still be able to train her, hoping it would miraculously go away. Even while struggling through the session, Katie didn’t really get it. “I didn’t look Bell’s palsy up. I didn’t Google it because I didn’t think I had it. I was, like, ‘I’m fine, I’m fine,’ and I carried on.”
After the awkward hour trying to enunciate, she rushed herself to University City’s urgent care. Once in an examination room, the doctor on staff walked in, took one look at her and said, “You have Bell’s palsy.” Katie was surprised he knew right away. “What does that mean?” she asked. He told her Bell’s palsy was an inflamation of the facial nerve that causes facial paralysis. He also mentioned that 80 percent of the people who get Bell’s get their function back. “You’re young and you’ll get it back,” he said matter-of-factly. But through her fear, Katie only heard the shocking percentage that don’t. She could be one of them.
The urgent-care doctor’s brusqueness didn’t help. She wanted something concrete about what happened to her face. How did it happen? What did this mean? The doctor said, “I’m going to put you on anti-virals and steroids for the next two weeks — there’s no proof that either of those work but it can’t hurt.” There was no “proof” that she would get her smile back.
Bell’s palsy is a form of temporary facial paralysis resulting from swelling, compression, damage, or trauma to the facial nerves. When Bell’s palsy occurs, the function of the facial nerve is disrupted, causing an interruption in the messages the brain sends to the facial muscles. Scientists believe a viral infection, headaches, chronic middle-ear infection, high blood pressure, herpes, shingles, diabetes, sarcoidosis, tumors, Lyme disease, and trauma such as a skull fracture or facial injury can be the cause of Bell’s palsy, but exactly what brings on the swelling and damage to the nerve is a medical mystery.
The doctor ruled out a stroke. He confirmed his diagnosis by asking her to, “Move your eyebrow.” Katie couldn’t. After a stroke you can still move your eyebrow and with Bell’s you can’t move anything. Then he told her she didn’t need to come back to see him. “It will go away on its own and if it doesn’t, if you don’t see movement in six months, you will have to see a neurosurgeon.”
“I was, like, ‘What? That’s it?” Katie was scared. She looked like a different person. She felt like a different person. If her face didn’t move within the six-month mark, the nerve could be dead, resulting in permanent facial paralysis.
Sitting in shock in the urgent-care parking lot, Katie thought about Anthony, her boyfriend of almost three years, and wondered if he’d leave her. He didn’t sign up for this.
She called Anthony at work to give him the news. He told her to come right over. Anthony could already hear the effect it was having on her speech. “It sounded like she just had dental work done.”
When Katie reached Anthony, she was greeted with a big embrace. Then Anthony leaned back to look at her face. “I was expecting more disfigurement. But what I saw was just an expressionless face, kind of droopy.” He tried to coax a smile and when he did, he could see something was physically wrong. “Her smile is so wide and bright and at that moment, half of it was just gone.” He says he thought, Oh, no! Not her smile! and his heart sank for her.
Anthony resolved to “stay positive and not let either one of us slip down the rabbit hole of despair.” He set out to learn as much about Bell’s palsy as he could so he’d be armed with information in the “quest for hope.”
Anthony is a lot like Katie’s father, Jim Burke. When Katie was growing up in New Jersey and her mom, Kathy, was first diagnosed with breast cancer in 1996, he did the same thing. Jim set out to learn everything he could about breast cancer so they could fight the disease with knowledge.
Katie’s mom was 38 years old when she learned she had breast cancer. Katie was 8. Kathy felt a pain underneath her rib-cage and went in for a mammogram. On a typical mammogram, the tumor would not have been found, but because of the pain, extra imaging was done and a small tumor was then found, located behind her rib.
Two surgeries, severe lymphedema, chemo, radiation, and a prescription of Tamoxifin followed Kathy’s diagnosis. A year and a half later, Kathy fell as she walked across a parking lot and broke her shoulder bone. While x-raying her shoulder, they found a ¾-inch tumor in Kathy’s shoulder and learned the cancer had spread into her bones. Kathy’s breast cancer was back with a vengeance and had metastasized into Stage IV.
That day, the doctor told Kathy, “You’re going to die from this. It’s just a matter of time.” Kathy decided not to tell the kids that she was dying. She told Jim in earnest, “I want them to be happy for as long as they can.”
Katie had no idea her mom was dying. She was young, a happy-go-lucky kid. Her mom, Kathy, wanted her to stay that way.
Kathy worked through most of her diagnosis, so it was hard for anyone to tell how sick she was. As vice president of a chain of 95 camera stores spread throughout New Jersey and Pennsylvania, she wanted to work for as long as she was able. She’d receive chemo on a Friday, recuperate from the chemo over the weekend, and then head back to work on Monday. She pretended everything was all right… until she couldn’t.
Behind the parenting scenes, she and Jim tried everything to fight her cancer. They carried on the façade for the kids for almost four years until Kathy stopped working and was bedridden.
As she got sicker, Jim and Kathy signed up for a clinical trial. There are benefits and risks to stage IV clinical trials. When agreeing to participate, a benefit is getting medicine that might not be available or approved yet. Many people participate as a “Hail Mary” to stop time, a last-ditch effort to fight the disease. But there are also risks, one major one being severe side-effects that could make matters worse.
In Kathy’s case, the risk outweighed the benefit. Living on Fentynl patches, liquid morphine, and receiving hospice care at this point, Kathy knew she wasn’t getting better. So, Kathy and Jim left the kids with family, went for their “Hail Mary” pass and participated in a clinical trial. The afternoon the experimental medicine from the clinical trial was injected, Kathy declined rapidly.
Jim immediately called for the kids and sent for Kathy’s extended Italian family. Kathy quietly slipped into a coma. Jim pauses as he remembers that day, “I didn’t even know it was a possibility to never talk to her again.”
For three days, Kathy and Jim’s families and friends came by the house to say their last goodbye and wait as Kathy held on. When the house was still, Katie sat with her mom, holding her hand. “I told her it was okay to go, that we would be fine. I told her I loved her,” Katie says, looking off. “She wasn’t responsive, but I knew she heard me.”
On July 1st, while Katie and family were downstairs, Kathy opened her eyes, looked at Jim one last time, and took her last breath.
Katie struggled with forgiving her dad for not telling her how sick her mom was. Her dad had told her, “Mom’s gonna get better,” and Katie believed him. Losing her mom was never a possibility. Even though Katie learned it was her mom’s wish not to tell her and her brother, she was still angry.
Jim doesn’t understand why he didn’t tell her either. “It made sense then.” Looking back now, Jim wishes he had. “We both just thought she would get through it and we wouldn’t have to.” He continues softly, “When you’re in the middle of it, you’re trying to survive and pretend things are normal for the kids. I never thought she would actually die. I thought we’d get through it.”
After her mom died, Katie filled every minute with school, a part-time job, and volunteering for the Key Club so she wouldn’t have to think about the tragedy that struck their family. She used her megawatt smile to mask the pain.
Her dad Jim fell apart. He mentally drifted away but continued the motions of single fatherhood. He went to group counseling and, needing companionship, began dating. Katie felt she had lost her mom and her dad. She was alone.
The only person Katie knew wouldn’t leave her, who she could always count on, was herself. She didn’t need anyone and set out to prove it. She began working at a TGIFridays, moved out of the house her senior year, and rented a small one-bedroom on a farm.
Space to heal
Time passed, Katie got admitted to San Diego State University across the country. Jim stopped dating and tried out being on his own. After some of the trauma of losing Kathy wore off, he began to heal.
Katie left New Jersey and entered SDSU. She was transferred to TGIFridays in San Diego and picked up a serving job at Dave & Buster’s, allowing her to contribute to her schooling and to save enough to study abroad in China during her sophomore and junior year. She owes much of her success to her “jenky Walmart bike” that got her to and from school and work.
Katie graduated in 2010. Her dad, brother, and mom’s sisters were there. She wondered if her mom saw the kind of woman she was becoming. Did she see her in cap and gown? Was she proud?
Katie stayed in San Diego. With her volunteer experience and work résumé, she landed a job with United Way. While working full-time, she kept her night-time serving job at Dave & Buster’s. She also volunteered for Susan G. Koman and the Make a Wish Foundation.
Looking back now, Katie credits burning the candle at both ends for “my escape.” The more she filled her life with meaning and purpose, and lived harder, and helped more people, the less she had to feel.
Katie started taking yoga at CorePower in Pacific Beach. Always klutzy and uncoordinated, “for the first time in my life, I felt strong and athletic.” It doesn’t help that at just 5´4˝ she has a size 11 foot. Yoga calmed Katie and soon after she began her practice, she began studying to become an instructor.
She left the United Way once she was hired by CorePower. “Once I started teaching yoga I cultivated a following. It wasn’t because of my expert cues to move students into position, it was because while I was teaching, I was sharing what I was going through and it resonated with people.” Soon after, Katie’s classes grew to full capacity, with yogis mat-to-mat.
Katie would teach a couple of yoga classes during the day, then serve people booze and bar food at Dave & Buster’s. The cash earned at Dave & Buster’s was hard to give up but after a year of juggling both jobs and contrasting sides of herself, she left Dave & Buster’s.
Yoga and fitness became Katie’s focus. She built her business, binspired.life, into personal training and coaching. She was doing what she loved.
Until Bell’s palsy blindsided her right out of her warrior pose.
After her diagnosis, Katie’s bosses told her she could take time off. But unblinking eye, awkward smile and all, Katie felt she had to “show up in the face of my discomfort.” So, she did. She showed up and she taught, accepting that cues like “forward fold” would sound like “fffforward fffffold.”
Katie’s eye wouldn’t blink so she had to put drops in to lubricate them every two minutes throughout the day. She could no longer wear contacts. At night, she had to tape her eye shut. Her hearing became sensitive, so she had to wear ear plugs. The sun was brighter, but now, somehow not as comforting. She had a tough time eating and drinking because the food and drinks would fall out of her mouth. She went to acupuncture daily to stimulate movement. And despite the stares, she kept teaching in front of hundreds of people every week.
She began documenting her experience on Facebook.
August 26th, she posted a video about her diagnosis so she wouldn’t have to explain that she didn’t have dental work done, but she had Bell’s palsy. She told her friends, “I’m scared. But please don’t make a big deal about it. Please visualize me with a smile.”
Within two weeks, Katie and Anthony had plans to go to Kansas to celebrate the wedding of Anthony’s childhood friend. It was a momentous occasion. She wanted to look pretty. She wanted to get her smile back.
Before the wedding, Katie saw a Chinese acupuncturist who told her that her qi (energy) was depleted, that she was pulling from a deficient place and needed to build her energy bank back up again, and that would take time. She told Katie she had “to eat beef stew” and slow down. This resonated for Katie.
Anthony made her the best beef stew she had ever tasted.
Katie and Anthony went to the wedding. Katie turned her face in pictures so the paralysis wouldn’t show. Throughout the ceremony, Anthony held her closer, reassuring her that her Bell’s didn’t matter to him. He felt that her Bell’s palsy was strengthening her.
Katie’s Facebook posts became a platform for her thoughts, her struggles, and her loss. #BellsPalsysucks #halfasmileisbetterthannosmile was often found under pictures of Katie with tape over her eye and a crooked smile. She wrote about being “grateful for the opportunity to learn” and “to create new possibilities” with her diagnosis. But as positive and hopeful she was, “I kept wondering if my nerve was dead, if my face would ever move again.”
She continued to see an acupuncturist every day. She began to take her time with things and focused inward, trying to fill up her energy bank. She meditated, often seeing her mom’s strength in her quieter moments.
Anthony didn’t leave Katie. He figured out how to tape her eye shut so it wouldn’t open in the night and damage her retina.
One month after Katie’s Bell’s palsy diagnosis, her eyebrow fluttered.
“I was so happy. That meant my nerve was alive!” From that day, Katie began to see subtle movement in her face. At the seventh week, her eye began to blink on its own again.
Gradually, Katie’s smile crept back across her face. Her right side is now 98 percent back to normal. She doesn’t know what brought on her Bell’s palsy, but she suspects it had to do with busying herself so much and trying to squeeze every last moment in to everything that she had nothing left.
“My Bell’s taught me to slow down, literally, because I had to chew and drink holding my mouth shut. The constant hours on the acupuncture table in stillness gave me space to heal. And for the first time, I genuinely mourned my mom.”