Like any 14-year-old preparing for high school, Emily Lemiska felt self-conscious about her appearance. She wasn’t worried about her weight, hair or skin. Emily was self-conscious about her short neck. She asked her parents to make an appointment with her pediatrician to take a look. Emily, her parents and her doctor alike were shocked when an X-ray showed she had Klippel-Feil syndrome (KFS).
Klippel-Feil is a spine disorder characterized by the fusion of two or more cervical vertebrae, which decreases range of motion and flexibility in the neck. It is known to cause pain, especially later in life, and increases the dangers of even minor trauma to the neck. With reports estimating the condition occurs in one in 40,000 live births, KFS is considered a rare disease. Emily’s case is even more atypical in that seven of her vertebrae, C2-T1, are fused.
Fortunately, Emily was asymptomatic, with no pain or discomfort. Nor did she appear to have any of the additional abnormalities – ranging from heart defects to hearing loss – sometimes associated with KFS. Although she could no longer participate in some of her favorite activities like playing volleyball or riding rollercoasters, which put her at risk of whiplash or other injuries, she was able to maintain a normal life. While doctors continued to monitor her neck annually, her health thankfully stayed the same.
Determined to experience life to the fullest, Emily left her small town in Connecticut to attend Northeastern University in Boston. She excelled in her classes, formed friendships with a tight-knit group of honors students, and met her now-husband, Dan. She was extremely active in extracurricular activities, serving as editor-in-chief of the literary arts magazine, vice chair of student media and copy editor at the newspaper. Even with her busy schedule at school, she managed to work part-time and volunteer on a regular basis.
In 2008, after a semester abroad in Barcelona, Emily graduated summa cum laude with a bachelor’s degree in English. She accepted a position at Mass General Hospital in the public affairs department, where she served as the youngest-ever editor of the hospital-wide newsletter, wrote messaging on behalf of the hospital president, spearheaded communications campaigns and interacted with local media. Her job was chaotic at times, but she loved it. She took pride in her work and became a valuable asset to the team.
Meanwhile, Emily found an outlet from her demanding job in the form of running and weightlifting. She liked the way physical activity made her feel, and the doctors who continued to monitor her encouraged an active lifestyle. She had no idea that an upcoming five-mile run would change the course of her entire life.
That springtime “fun run” around the Charles River in 2011 would be the last time she ever ran. The day after the race, Emily was startled by brutal shoulder and neck spasms that crippled her with pain. When they didn’t subside in a few days, she made an appointment to see her doctor. He was perplexed. X-rays and MRIs didn’t reveal any reason for her sudden symptoms. He assumed she strained a few muscles, prescribed medication and a neck brace, and suggested taking it easy for a few weeks.
The next two months were torture. Emily couldn’t use her arms or lift anything without excruciating muscle pain; even typing at work irritated her shoulder muscles. With every movement, her entire spine felt as though it was being yanked. Walking and riding the bus to and from work became dreaded endeavors, and any vibration caused unimaginable discomfort. Getting through the workday became her sole focus: she quit exercising, stopped volunteering at the local library and declined invitations from friends. Dan and her two roommates had to help her with even the smallest tasks, like making dinner and cleaning.
The symptoms only intensified. In July, Emily woke up before dawn to discover her left side completely numb. Terrified, she called her parents and then took a taxi to the emergency room. Again, the doctors were at a loss.
The ER visit led to a consult with a neurosurgeon. Within minutes of reviewing her neck imaging, the physician told Emily and her dad that she had another abnormality besides fused vertebrae: a tethered spinal cord. This neurological disorder is caused when spinal cord tissue attaches to the spinal column, limiting the movement of the spinal cord. He also discovered that in the same area, Emily had diastematomyelia or a split spinal cord. In hopes of halting the progression of these conditions and lessening the pain, he proposed emergency neurosurgery to untether her spinal cord.
Dan’s commitment never wavered despite the stress on their relationship. In fact, he embraced Emily more fully than ever, proposing to her three days prior to her operation. In the days leading up to surgery, Dan began referring to her as his “brave little toaster,” a reference to the 1987 Disney movie about an animated toaster who faces many obstacles on his journey to find his owner.
The six-hour surgery, by technical standards, was a success, and the spinal cord was freed from the spinal column. After seven days in the ICU, she went home to Connecticut to finish her recovery. Determined to return to normal life, Emily went back to work only a month and a half later. She immediately realized she had returned too soon. The pain returned quickly and with vengeance.
For the next year and a half, Emily put on a brave front as she tried to keep the life she loved. Work was excruciating – she would sneak off to lie down in the conference room, come in late and leave early, and work from home as much as possible.
“I was absolutely miserable, but too stubborn to show it outright – I didn’t want anyone to feel bad for me. By the time I got home at night all I had the energy to do was cry.”
Weekends were no longer spent enjoying all that Boston had to offer. Instead, she would lie in bed, trying to recover from the week before and prepare for the one ahead. All the while, the muscle spasms and nerve pain were unrelenting.
Her frequent doctor visits left her discouraged as well. While following the doctors’ suggestions, nothing subdued the pain. Because her muscles were irritated and her spinal cord increasingly sensitive post-surgery, treatments like physical therapy and injections would sometimes even exacerbate her issues.
In December 2012, Emily made the difficult decision to leave her position at Mass General Hospital. Much of how she defined herself was her successful career. Quitting was a huge loss, but she had no choice. She needed to change tactics, and instead of constantly playing defense against her aggressive symptoms, she had to go on the offense. To be nearer to her family, Emily and Dan decided to move back home to Connecticut.
For the next few years, Emily focused on her health while Dan attended law school. She continued freelancing for clients in health care and higher education, while trying out a variety of different treatments–from injections, to medications, to physical therapy and beyond. At times, she grew frustrated with the dead ends, but she knew she had to keep searching.
After a long period of trial-and-error, she found that a combination of therapies: yoga, physical therapy, acupuncture, massage, and creative ergonomic solutions, that helped make her pain more manageable.
“It also took a serious change in perspective on my part. At first, I was trying to find a treatment that would completely stop the pain. Once I understood that the pain wasn’t going away, I started to accept it, and life got a little easier. I’ve learned a lot of strategies and workarounds for keeping the pain tolerable. I feel like I’m in control of the pain, not the other way around.”
Emily especially credits yoga, and being able to gently increase her strength and flexibility, for a decrease in her pain levels.
As her pain slowly improved, in 2016, Emily connected with the U.S. Pain Foundation, and began working for the organization as Associate Director of State Advocacy. Although her career focus had been communications and writing, she loved political science and the idea of advocating for other patients. She drafted memos to policymakers, met with legislators, spoke at panels and hearings, and helped lead coalitions of other patient groups, taking on more and more responsibilities over time. Soon, it became clear that her communications expertise made her a perfect fit as U.S. Pain’s first Director of Communications, a position she has held since 2017. In early 2019, she transitioned to be full-time and has been an integral part of U.S. Pain’s many programs and services ever since.
Although her life has returned to normal in many ways, Emily is not ashamed talking about her personal trials, especially those first few years after diagnosis. She frequently shares her experiences with other patients, and feels that if more people were open about their hardships, there would be fewer stigmas and less misunderstanding about chronic pain. She believes sharing struggles does not make a person weak or vulnerable, but shows strength.
Though she still deals with serious pain, Emily is grateful that she’s been able to reclaim her quality of life – and her career.
“People often seem surprised at how positive I am,” says Emily. “We all have a tendency to underestimate ourselves. No matter what life throws at you, you can and will find a way to live the best life possible.”
Klippel-Feil Syndrome Freedom –
Klippel-Feil Syndrome Alliance – http://kfsalliance.org
Klippel-Feil Syndrome Alliance Facebook page –