Authors on Friedreich’s Ataxia – Susan Allen Carter
by Michell Spoden
Susan Allen Carter is a forty-year-old mental health counselor from the United States and is part of literacy project with Authors on Friedreich’s Ataxia series.
Michell: There is something similar with each of the writers for this project. What is that?
Susan: Each contributing writer has personally been affected by FA. The majority are diagnosed personally with FA. Because of this in depth connection to FA, the authors are able to present a firsthand insight to the characters of the novel. This shared connection transcends boundaries of country and culture. Within each person in this project and, in fact, on this planet, beats a heart that faces physical and emotional turmoil daily.
Michell: Your group has decided to translate this book into different languages, please tell us more about that aspect of the project.
Susan: Although we, as individuals, are separated by distance and frequently by language, the daily living, emotional struggles, and fears of FA unite us as humans. This disease affects us individually, our families, friends and community. It is up to us to educate ourselves and others about, not just our disease, but our collective humanity on this earth. Look at my heart, not just the symptoms of this disease. Get to know me & others through the lens of FA. Knowing about my physical struggles can help me & you relate and are more empathetic & understanding with people whether or not they have an obvious disability. We all feel: from frustration to sadness, fear & doubt, love & anger.
Michell: Do you believe that this project will lead to other extraordinary events in the future?
Susan: Absolutely! Awareness breeds curiosity and curiosity begets knowledge and knowledge inspires people. Inspired people have hope and meaning in life. With inspiration is a creativity to innovate new projects.
Michell: Outside of raising funds for the book for the cause you are currently mediating for, what other humanitarian efforts have those in the group been involved with?
Susan: I’ve always worked with children, from babysitting through high school to tutoring for a cottage that home twelve children (ages 5-18) in a residential group home for children throughout my undergraduate and graduate studies at university. In addition to tutoring, I spent thirteen years working as librarian at the group home. During this time, my love of animals sparked my interest in learning about behavior and the emotional connection between humans and animals. I volunteered at a local animal shelter, where I served as a temperament tester, behavior consultant and trainer. I also served on the Humane Society board. During my graduate studies, I began my work (5 years) counseling small groups of combat veterans who were living with PTSD. Though it has been ten years since worked with them, these living heroes continue to inspire me. The internal pain and emotional suffering of PTSD and living in a world where even your own family doesn’t understand and doesn’t know how to help…not unlike FA.
Michell: Since all of you struggle with the same disease, what are the greatest challenges with having it? Is there anything that you would like to share with us that could help us to better understand what we outsiders can do to make a difference?
Susan: Just be kind. Ask how can you help and know that as this disease progresses, I’m learning too. I’m learning my limits and the lessons are both physically and emotionally painful. If I’m short-tempered when you offer to help or ask about my condition, that’s just where I am in that moment, not who I am and you have done nothing wrong. Understanding that goes a long way.
Michell: What were some of the barriers you ran into during the project? How did you solve the issues?
Susan: language, culture, time zones and computer difficulties… We have a common bond through FA and the desire to make difference in this world.
Michell: Did any of you feel you had learned some major lessons? If so what were they?
Susan: All struggles have meaning. FA has presented me with my humanity and allowed me to connect to people whom I never would have known. All who have loved have lost. All who dreamed have feared. No matter our circumstances, we are not alone.
Michell: What are your favorite authors?
Susan: My favorite authors include C.S. Lewis, JRR Tolkien, Rick Riordin, Dee Henderson, Sir Arthur Conan Doyle & Jane Austen.
Read Sarah Allen’s Interview about international literacy project against Friedreich’s Ataxia.