Today Jerry Williams, founder and president of MSU, is interviewing our very own, Emily Filmore. She is an MSU Board member, serving as Secretary, and her book, “The Marvelous Transformation: Living Well with Autoimmune Disease” has just been published. We believe her book is going to be instrumental in changing the face of chronic illness, especially that of Myositis and other autoimmune diseases.
Jerry endorsed the book:
“The Marvelous Transformation is an honest, intimate, and entertaining read based on personal experience with autoimmunity. Emily engages her readers by incorporating activities throughout the book while guiding them through their exploration into a complex illness process that does not have to be a negative experience. Whether you are a patient, caregiver, healthcare professional, or interested in learning more about living with autoimmunity, you will find great knowledge, an array of resources, and helpful tips that you will want to share with your family and friends to help them better understand autoimmunity.”
Jerry: Why did you write the book?
Emily: I wrote “The Marvelous Transformation: Living Well with Autoimmune Disease” to share what I have learned in my 20 years of living a spiritually-fulfilled life in spite of my illness, Dermatomyositis. My mentor, Neale Donald Walsch, thought I had a unique perspective that would be helpful to others. I realized that if I could help others it would give purpose to all of the pain I had endured.
Jerry: What do you hope to accomplish with the book?
Emily: My goal is to help people. Wherever they are in the status of their health, I want them to know that, 1) they are not alone in feeling scared when health goes “wrong,” 2) they can change how they perceive their lives and live happily even when their health isn’t how they would hope, 3) to give caregivers and spouses some insight into the experiences of their ill loved one, and 4) to assist medical practitioners’ awareness and empathy for what their patients are experiencing.
Jerry: What did you learn most about yourself in writing “The Marvelous Transformation?”
Emily: I found that I am stronger than I realized. I also learned that once I started listing them, the gifts autoimmunity has given me are vast and invaluable. I wouldn’t be who I am, nor have the beautiful life I have, without my disease. That makes me grateful for every moment and even every struggle of it.
Jerry: How do you stay so positive?
Emily: I don’t! Positivity is a daily exercise. I have to choose every single day to be happy and to not allow my limitations to limit my existence. I “stay positive” by never losing sight of my goal of living well and I make conscious decisions in every instance to that end.
Jerry: In the book it seemed you were pretty healthy, how is your health, today?
Emily: Thank you for asking – today my health is stable. I am currently off of all medications and feeling pretty well, but my strength and endurance seems to stay the same no matter what I do. I went through a short rough patch, health wise, last fall and was able to come out of it quickly. I went through the entire cycle of emotions all over again: guilt, shame, sadness, anger, grief, acceptance, and then I took back control of my reality and decided to re-find my happiness and gratitude.
Jerry: What inspired you to include the journal exercises in your book?
Emily: The idea of transformational and active reading is one that I have encountered through many years of reading “self help” books. I have found that when I am asked to process what I read through my own thoughts – through my own hand – onto paper, I internalize what I have read more profoundly and better learn from it.
Jerry: You know how much we value caregivers, and in your book you include tips for caregivers. What is your experience with caregivers and how do you think we can better help them?
Emily: My husband, Scott, and my other close family and friends have all been instrumental in my ability to maintain a healthy, active life. I have been fortunate to know that there has been no moment in which I had to face any of this alone. The caregiver tips in the book actually arose out of the advice of my mentor when he first read the book. He noticed how pivotal Scott’s support was to my wellness, and he thought it would be helpful to really point out to others what Scott has done for me. As I explored that further, I noticed the selflessness, acceptance, and unconditional love Scott gives me, when I am not always prepared to give that to myself. I think one of the greatest things we can do in return, honestly, is to honor people who are willing to be so loving, because there are some partners and family members who don’t. That’s not a judgment on the ones who don’t; dealing with illness is hard for all involved, and there is nothing we can do to “repay” our support networks for what they do to care for us. Showing daily gratitude and love; honoring their willingness to be there for us is a beautiful thing.
As for the organization, I think if we can just continue to give caregivers and patients information and support when they ask, honoring their needs as best as we can, we will help the caregivers by helping the patients.
Jerry: How does it feel knowing that so many are now reading your personal story that you do not hold back on?
Emily: Wow! What a good question. Obviously, I am very open and don’t really embarrass easily, but I have to say it feels different to know that the book is actually out now. I am really excited to know that people are reading the book, and I have been getting beautiful, wonderful messages of appreciation from people saying that they see themselves in the book and see a new positive way to view things! I truly hope that by exposing some of my most intimate details I can help others feel relief and find the gifts in their own life.
Jerry: How do you manage to do so much, such as homeschooling, volunteer work, writing books, your daughter’s commitments, etc.?
Emily: I derive my joy and energy from being busy. When I don’t have something to do it is harder to get out of bed. Even if I am very fatigued and lacking of physical energy, if I know I have to be somewhere or do something, it is easier to get moving than if I feel well but have no where to be. I often say that I am not sure if keeping up with my daughter keeps me young or ages me faster; but it sure keeps me on my toes, and taking her to her activities helps. It also helps that by homeschooling her and writing/working from home I have the flexibility to work when I am able and to rest when I need to. I take frequent breaks and naps and we sleep in until at least 9 a.m. most days. Having fibromyalgia and chronic migraines on top of Dermatomyositis makes this flexibility and ability to rest even more important.
When I do take on a volunteer assignment, I am always clear up front that my health may interfere, so I try not to be the person who is responsible for events (although I did plan and co-chair a trivia night for my daughter’s skate team this winter – and ended up with a terrible migraine that day but had to push through).
Jerry: What brought you to want to volunteer for MSU and join the Board of Directors?
Emily: I believe in the work MSU is doing. I believe in the idea that “knowledge is power” and that people deserve to learn how to participate in their own healthcare; to become their own advocate. I am so excited to have found a group of people working toward the end! I spent the majority of the past 20 years floundering around without any network of people who knew what I was going through. My family and friends have always been amazing, but there is something very special and comforting about connecting with people who share similar experiences. As soon as I met the MSU team I knew I wanted to be a part of your efforts. I hope that through my writing I will be able to help spread awareness of the organization as well as comfort those who have suffered alone for any time at all.
Jerry: Where can our readers purchase your book?
Emily: The book can be purchased through any major bookstore or retailer (it may take a couple of days to arrive). It is also available on Amazon!
Jerry: What’s next?
Emily: I have started a book discussion group on Facebook. I am available for questions and want to help facilitate other people in their own Marvelous Transformations!
I also have another book coming out in September about spiritual parenting and I continue to write on the topics of spirituality, overcoming obstacles, wellness and parenting.
Jerry: Thank you, Emily for taking the time to give us your insights, both in the book and here today!
Emily: Thank you for having me, Jerry!
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