FALMOUTH — At the age of 12, Haley Stark had a spinal cord stroke that changed the course of her life.
Now she’s sharing her experience to inspire others who face challenges in their daily lives, while also raising money to support the work of the United Spinal Association.
The mission of the association, based in New York state, is to empower people with spinal cord injuries to regain their independence and achieve a better quality of life, according to its website.
Stark, now a junior at Falmouth High School, has published a book called “Tying the Ribbon: How I survived a spinal cord stroke – and my life afterward.” It’s available on Amazon.com for $18. Twenty-five percent of book sales will go toward the United Spinal Association, she said.
The book consists of carefully selected passages from a diary and journals kept by Stark, from her initial diagnosis through the road to recovery.
These days, she said, “I (still) cannot move my right hand and struggle with mobility and sensation on my right side, but I walk and get around pretty easily (and) I have no problems with speaking anymore.”
Stark said doctors are still unsure why this happened to her. She was doing her homework on a normal afternoon and then felt a sharp pain in her right shoulder.
“(It was) completely out of the blue,” she said. “The severe pain spread across my body until, 90 seconds later, I was completely paralyzed. Upon arriving at the hospital, I (also) contracted a fever, had sepsis and septic shock, and a variety of other issues that followed.”
Stark said she decided to self-publish her diaries because of the “possibility of bettering the lives of people going through something similar.” That’s when she “got serious about combining the diary entries into a single, coherent recollection.”
What she hopes readers gain is “some insight into the life of young people who deal with some kind of disability. Trying to maintain life as an average teenager while dealing with a spinal cord stroke is impossible.”
Her overall message, Stark said, is encouraging people to “embrace the challenges they face” while trying not to place blame.
“I desperately wanted something to be at fault for what I was going through, (but) what I’ve realized … is that trying to find a reason takes away from the lessons you can find in taking on a new version of yourself,” she said.
In reviewing her thoughts and choosing what parts to share, Stark said, “so many parts of my diary surprised me.”
For example, “While in my first five-hour MRI, I was apparently focusing on thoughts about a late assignment I hadn’t turned in, middle school boy drama, and whether or not I’d be able to compete in a track meet the following day.”
In those first few hours and days, she said, “I had no perception of how life-changing my injury would be. Even when completely paralyzed, I had convinced myself that I’d be running again in no time.”
Stark said what got her through to recovery was the “incredible” and supportive response from her family and the wider Falmouth community.
“Within days of my injury first presenting itself, a card-writing gathering was organized at my school. Hundreds of people wore green to support spinal injuries and green ribbons were strung all around town.” Stark said she also received daily messages on social media.
At Falmouth High, Stark is involved in the theater company and the speech and debate team. “I have also involved myself in the civil rights clubs, poetry, the school newspaper, and many other” activities, she said.
After high school she plans to study political science and disability rights at Georgetown University in Washington, D.C.
What she most wants people to know, Stark said, is “my injury does not define me, (although) it has shaped me into the person I am and continues to shape the person that I am becoming.”
Haley Stark, now a junior at Falmouth High School, has recently published a book about her experiences after having a spinal cord stroke at the age of 12.