Updated: Dec 8, 2019
The Best Ever You Network is honored to feature Haley Stark. We are also proud to issue our Elizabeth's Best Seal of Excellence for Haley's book Tying the Ribbon.
Haley is a seventeen-year-old, born-and-raised Maine resident getting ready to embark on her senior year at Falmouth High School. At the end of 2018, Haley published a memoir about a life-threatening spinal cord stroke, which she suffered at age twelve, Tying the Ribbon—how I survived a spinal cord stroke and my life afterward. Just this past month, she co-produced an Audible audiobook version of the book. Before and after the publication, Haley has been busy juggling my recovery, school life/assignments, and my newfound passion for speaking out about disability rights.
Here's our interview with Haley Stark:
How did you get to be where you are today? In order to achieve the mental state necessary for publishing what is basically a diary from my early young adult life, I had to negotiate with myself often. In rereading my book now, I tend to scoff at some of the repetition or less-than-senior-year-worthy writing; however, I always recognize that I made the decision to publish as much of the authentic, twelve-year-old voice as possible. Thus, throughout the editing process, I made the decision to fix all of the spelling/grammar issues without changing the original wording of my journal entries which I had kept while in the hospital. The memoir is simply a compilation of diary entries from my stroke which I recently weaved together into a coherent narrative. Even after finishing the piece, I questioned whether or not I should share such a personal, detailed story with the world for a few months. Finally hitting “send” on Amazon took time, energy, self-care, and as much optimism and positivity as I could produce for myself. Of course, once the public started giving me feedback, that optimism and positivity only grew. Have you ever been fired? I have never been fired, but that is likely due to my lack of work experience. I have worked at my mother’s restaurant, Bueno Loco, and at my theatre director’s summer theatre camp, and I have been relatively successful in both positions. I have had my own set of obstacles with my lasting paralysis in my right hand, but I have always figured out ways to maneuver around these setbacks or, in some instances, fully embrace them as part of how I will complete tasks efficiently. What are your real passions? Before my injury, I knew that I would be an athlete for sure. I played a variety of sports, but track is where I really shined (I’m giving myself permission to brag now since my mile time has increased from a 5 minute to a 16 minute post-stroke...I apologize for the twelve-year-old lack of humility here). I was a sprinter and was extremely successful in meets. I no longer run because of the nerve damage in my leg that persists from my stroke, but I have found an entirely new realm of passions that I believe would have otherwise remained undiscovered. Public speaking has become the backbone of my activities and extracurriculars; I have acted in theatre for the past five years for the fall, winter/festival, and spring seasons. I have been heavily involved in the speech and debate team at Falmouth High and had the ability to speak about disability rights in a national tournament my sophomore year. I love participating in my high school’s improv troupe and I’ve involved myself in just about every club our school has to offer (GSTA, school newspaper, civil rights club, etc.). The passion about which I care most deeply is giving speeches about my injury. I have been to Maine middle schools, retirement homes, businesses, and support groups to give 10 minute-hour long presentations about my book, what I’ve learned in the publishing process, and everything I’ve learned about myself and humanity after having a near-death stroke. If you won the lottery, what would you do? A percentage of the proceeds of my memoir are donated to the United Spinal Association, so I would like to continue that donation. I will admit that I would use some to offset the impending financial burden of entering college, but ultimately for the purpose of gaining an education/skillset which could continue to spread the word about disability rights and accompanying advocacy. What do you do to help others be their best? I have given speeches at both large and intimate settings to encourage self-love, self-care, big-picture perspectives, and the acknowledgement of disability rights in Maine and the United States. How do you help yourself be the best you can be? I allow myself to learn from my mistakes and navigate the world while prioritizing my spiritual, mental, and physical health. I have learned to realize that every day is a new opportunity to grow and develop myself as an individual. By letting myself fail and fall, I have discovered countless strategies and tools to rebuild my strength. What do you like to do in your personal life? I love to spend time with my friends and family. I enjoy partaking in creative endeavours such as filmmaking and writing poetry. What do you hope to accomplish in the future? I hope to continue to spread awareness of childhood disability, invisible injury/illness, and general disability rights through speaking and advocacy. I want to inspire others to share their stories and use their experiences to promote self-care and greater perspectives. What is a book or two that you recommend? Aside from Tying the Ribbon—how I survived a spinal cord stroke and my life afterward, I recommend Just Mercy by Bryan Stevenson written about the foundation of the Equal Justice Initiative. Shameless plugs: Click to view my book: Tying the Ribbon—how I survived a spinal cord stroke and my life afterward , which is available on Amazon.
Click for the audiobook version narrated by FHS theatre company alumni, Corrie Legge
. To read about or watch videos made about my story, view any of the following links:
New Center Maine Interview Coast 93.1 Interview Press Herald Bangor Daily News HGHW Girls Rock Awards What are some of your favorites? (movies, websites, etc.) I love the movie The Theory of Everything about the life of Stephen Hawking. I am inspired by his ability to overcome his own physical setbacks and I appreciate how the movie details life with a disability and the ups and downs associated with this lifestyle. There is one scene in particular that makes me cry, no matter how many times I watch it… Hawking’s character is giving a keynote speech and he notices an audience member who drops her pen. For a moment, he is able to stand, walk towards her, and hand the pen to her. This dream-like moment resonates with me, as I often find myself staring at others’ hands, wondering how it feels to move my right hand (something I have forgotten). I’ll also imagine myself running while watching my school’s sports games in a similar fashion. This scene is unparalleled to me in terms of how moving the concept feels after having a permanent physical injury. Oh, and The Notebook...not for any deeper reason, but sometimes you just need a Nicholas Sparks chick-flick. Why do you do what you do? If I have learned one philosophy from my injury and the traumatic experiences which my family and I had to endure, it is that everything DOES NOT happen for a reason. Regardless, one’s journey to find and make a reason out of their experiences can bring about fulfillment. A reason does not naturally arise from your hardships. Putting in the time and effort to use your experiences to make something bigger than yourself is where the reason is born and developed. Therefore, I published the book and give speeches because I am doing the best I can to make a reason for my stroke.
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