I recently had the pleasure of being interviewed by Sunshine Mugrabi about how I transformed my life over the past 20 years in the face of immense pain and suffering brought on by dystonia. I hope you find our discussion to be of help on your journey, whether it be with dystonia, pain, or any other life challenge. Sunshine also has dystonia and writes a really great blog with lots of insightful information. Please check out her work.
The interview is below – you can also view it on Sunshine’s blog by clicking here.
I first learned of Tom Seaman when I was diagnosed with dystonia and found his book, Diagnosis Dystonia: Navigating the Journey. I was feeling relieved to finally have a diagnosis, any diagnosis. At the same time, I had no idea what to expect.
Dystonia, a movement disorder like Parkinson’s, isn’t a well-known condition. Lost and at sea, his book was a life raft—not only because it helped me understand dystonia, but because it gave me perspective on what it means to have an incurable chronic condition.
As a health coach, Tom works with people going through major life challenges. He helps people manage their suffering and learn how to live their best lives, no matter what they’re going through.
In this interview we talk about how he transformed himself in the face of immense pain and suffering brought on by dystonia. After turning his own life around, he decided to help others. His generous spirit comes through in everything he says.
Here’s our conversation.
Q: You coach people around the world. What are the most common issues they’re dealing with? How do you help them through them?
A: As a health and wellness coach, I primarily coach people who are dealing with health issues, be it physical or emotional. In most cases, we work on both because the mind and body are so powerfully connected, making it hard to address one without the other. The most common issues include chronic health conditions (primarily chronic pain), anxiety, and depression (and associated fear and isolation issues), as well as the things that cause and/or exacerbate these physical and emotional conditions. In almost every instance, rarely are these conditions mutually exclusive, so my coaching approach is eclectic based on the many challenges of life that contribute to one’s suffering. I also dabble a little with relationship coaching and help people achieve weight loss and other fitness goals as someone with unique experience in this area having gained and lost 150 pounds.
I meet clients where they are with no personal agenda. My approach is client centered so how I help one person is different from another because everyone has different wants and needs. The one constant in the coaching process is a whole person approach because everything in life is related to our health, so if you are struggling with family, work, relationships, social life, finances, etc., all of it impacts our health, so in almost every coaching relationship, lifestyle and stress are addressed.
Q: What do you tell someone who has just been diagnosed with a chronic illness?
A: That’s a really great question and one that is difficult to answer because I think it depends on the illness, the person, and the severity of the condition. For most everyone, it can be a very isolating, scary experience to be told that you have a chronic health condition, especially if there is no cure. Hundreds of millions are in this situation so I try to comfort people by letting them know that they are not alone and while this may be scary, there are countless people who have been through this (including me) and have found ways to rebuild their lives and even make them better. I also share my story about how to rebuild and regain hope… and then build upon that hope. I let people know that they need to express their emotions as fully as they can. It is important to allow the grief process play out and make the best of every day until you get your bearings about the life change that has taken place. Then an action plan needs to be put in place. I feel it is important for people to know that their diagnosis is not the book of their life. It is one chapter and while it may be a very hard chapter for some, there are many ways to work through it and I assure them that I will do whatever I can to help.
Q: You yourself have dystonia and have written about it in your book and blog. How does this help you work with your clients?
A: My book and blog don’t necessarily help me with my clients. It was everything that led up to me being able to write the book that is useful with clients. I experienced intense physical pain and emotional suffering for years that required me to face some hard facts about my life because of the dramatic changes. I didn’t want to face them for the first 5 years. It was too hard and painful. I also didn’t know how to navigate those waters. I didn’t have the tools to cope with the complete 180 degree life turn. It took years to learn all the things I have in order to pull myself out from some very dark places to then be able to share those strategies with others. My goal and passion in life is to prevent others from going down those dark holes like I did, and if they are in one, provide them with the lifeline to get out, which is what my book, blog, and coaching are all about.
Q: You’ve overcome a great deal since you were first diagnosed. How did you pull yourself out of the depths you were in?
A: I have done so many things over the years that it’s hard to pinpoint how I pulled myself out of the depths of despair. In order to answer that question fully and with perspective, I would almost have to rewrite Chapter 2 of my book, which shares my story in great depth. In brief, my symptoms began in 2001 and within 6 months I went from functionally uncomfortable to disabled to the point that I could barely lift myself out of bed because more than 10 minutes of sitting or standing caused intense spasms and pain above and beyond anything I had ever experienced. The simplest of tasks were unbearable.
During the first five years I fell apart. No treatments helped and I was put on medications that also didn’t do a whole lot. I turned to alcohol to medicate myself. I turned to food to comfort myself. I ended up gaining 150 pounds (all of which I have lost). I went through severe depression, anxiety, and isolation. My lifestyle was making me much sicker than I already was from dystonia and chronic pain.
One night in December of 2006, it all came to a head. I developed a severe stomach virus where I was stuck in bed for nearly 2 weeks. It was during this time that I was alone with my thoughts. I took stock of my life and for the first time, fully realized (and accepted) that I was drastically spiraling downward. I made the decision to not give up or mask the pain any longer. I promised myself I would try and find a way to improve not only my dystonia symptoms, but my mindset, so that I could take on life again with some confidence, all of which I had lost.
I used a combination of movement therapies, medications, various tools for pain and spasms, and I worked very hard on my mind; more specifically, my thoughts and perceptions. What I mean is that I learned how to be okay with what I perceived as not okay for so many years (my intense suffering). My perception about everything had to change, so I baby stepped my way doing something every day to improve upon some aspect of my life, be it physical, emotional, or spiritual.
I was never one who could easily sit idle, but I had to learn to sit with my pain using mindfulness techniques. I had to face the life change that had taken place and create a new life, which in many ways is more fulfilling than the one I had before when life was going well. In short, I had to learn to calm my racing mind that was filled with fear, anger, shame, guilt, and self-judgment. The more I practiced improving upon these things, the easier it was to address the physical symptoms.
I felt I had no identity other than pain, anxiety, depression, and complete isolation. I had to find myself again, so I had to buckle down and devote my life to putting in the work to transform myself. This required a physical, emotional, and spiritual health overhaul, a lot of journaling, talking with others, celebrating my achievements (as small as they may have seemed to others but for me they were massive), and learning to live in the moment. Every day I give myself small projects to complete and when I do, I feel a sense of pride and accomplishment. I have created a lifestyle where my health condition doesn’t define who I am. I define who I am no matter the challenge, and work with it rather than fight it. For me it is about being proactive versus reactive, so my working thought is, “how do I make the best of a difficult situation?” If you think about it, isn’t that the most we can really ask of ourselves?
I still have issues so I am not cured by any means, but my symptoms (physical and emotional) are night and day compared to how I was at my worst. This is how I measure my progress, not how I was pre-dystonia. I measure my growth from me at my lowest to the me I am today. This is the only realistic way to look at my life, and I think anyone’s life for that matter. “How far have you come from your worst?” is the best measurement of growth, and character, in my opinion.
I have learned so many things in the past 20 years living with dystonia that include perseverance, patience, compassion, courage, humility, a never give up attitude, and that every obstacle provides an opportunity. I had all these attributes before, but they are much stronger now. All of the lessons I have learned from my suffering have provided my life with meaning and purpose, but I had to first be open to learning and understanding that within every obstacle lies opportunity. When I began to look for opportunity rather than only see obstacles, my life changed.
Q: What’s your advice to those who are struggling with hopelessness and despair?
A: Again, it’s a difficult question to answer because hope means something different to everyone. I think we all have an innate desire to live as well as we can regardless of whatever challenges we have, so the most important thing, I believe, is to take one day at a time, one moment at a time, and remember that the day we give up might be the day our life changes for the better. Be honest about what I call “the suck of life” and don’t deny it or hide it. Find others who are going through the same and talk to them to gain perspective and hopefully a path that you too can follow to lead you out of darkness. I had to change my mindset from how dystonia was ruining my life to how dystonia was reshaping my life and how I would work with it to make it the best life possible.
Q: What in your view is the hardest thing about living with chronic illness or pain?
A: The unsettling and fearful state of feeling completely alone and that no one understands. This is not to ignore the intense physical pain some people experience (which I did as well). In the beginning it is the emotions associated with the life change that takes place and not knowing where to turn for help. We also might not be able to do some of the things that we used to, so we don’t feel like the person we once were. It is a mind-boggling experience. Until you experience it, most people do not understand that a chronic condition is not something that we get over as if it were a broken ankle or the flu or something similar that has an expected time of recovery. With a chronic illness, there is no recovery time that anyone can quantify. Not knowing from day to day how we will feel and what we are able to do is a very anxiety inducing experience.
Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone suffering with any life challenge. He is also a motivational speaker, chronic pain and dystonia awareness advocate, and health blogger. He volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader and WEGO Health as a patient expert panelist, and is a member and writer for Chronic Illness Bloggers Network. To learn more about Tom, get a copy of his book, subscribe to his free health newsletter, and take advantage of other resources, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.