Tom Seaman: “Be grateful for EVERYTHING you can do”

Not knowing how I will feel from day to day, or hour to hour some days, and what I am able to do is very stressful, making it difficult to make plans. Please understand how maddening and saddening this can be, and with that in mind, please never ever take your health for granted. Be […]

Thrive invites voices from many spheres to share their perspectives on our Community platform. Community stories are not commissioned by our editorial team, and opinions expressed by Community contributors do not reflect the opinions of Thrive or its employees. More information on our Community guidelines is available here.

Not knowing how I will feel from day to day, or hour to hour some days, and what I am able to do is very stressful, making it difficult to make plans. Please understand how maddening and saddening this can be, and with that in mind, please never ever take your health for granted. Be grateful for EVERYTHING you can do.

As a part of our “Unstoppable” series, I had the pleasure of interviewing Tom Seaman.

Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and author of 2 books: Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021) and Diagnosis Dystonia: Navigating the Journey (2015). Tom is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers Network, The Mighty, Patient Worthy, and The Wellness Universe. To learn more about Tom, get a copy of his books, or schedule a free life coaching consult, visit his website at www.tomseaman.com.


Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?

It is my pleasure. Thank you! After graduating from college in 1994 with a degree in education and psychology, I became a partner in a health education company for 6 years. I loved it but wanted to get back to working one on one with people in a different way, so I returned to school for a master’s degree in counseling. About a month before school began, July 2001, I was experiencing stiffness in my neck that never went away. I also noticed that my head began turning on its own to the right a little. I thought it was just stress from the life transition from the business world to a full-time student at the age of 30 in a brand-new environment. Unfortunately, as the first semester rolled on, the symptoms got much worse. After seeing many different doctors who did not know what was wrong, I did exhaustive research and finally self-diagnosed a neurological movement disorder called dystonia. Not long after, this diagnosis was confirmed by a neurologist at Duke University who specializes in movement disorders.

By this point, I could barely function due to the pain from the severe involuntary muscle contractions. My neck muscles were so contracted that my head was locked towards my right shoulder, and any kind of movement made it significantly worse. I had become so disabled with pain that I had to drop out of school, quit my internship at the university career development center, and move back in with my retired parents because I could not do anything on my own without help. I went from a very physically active person and an accomplished athlete in many sports, to disabled within a few months. I literally spent my entire day rolling around on the floor holding my neck and head trying to find a position that gave me an ounce of relief. The only time I got up was to go to the bathroom or get something to eat.

This dramatic and traumatic life change was a very hard reality to swallow, especially during a time that felt like the prime of my life. Everything as I knew it was over. From this point forward, my life took on a whole new meaning that I never expected or was prepared for.

Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you”?

I honestly don’t know what caused my dystonia. Dystonia can be caused by numerous things, and I can point to about a dozen possible reasons why I developed it, all of which are theories. This is not uncommon for a lot of people with this condition. That being said, I am more than happy to share what happened to my life shortly after the symptoms began, which was made much worse with many of my lifestyle choices. There was a period when I was ashamed to talk about it, and now I welcome the opportunity because I know so many people are in the same boat, and I want them to know they are not alone and that there is hope for a great life.

When my pain was out of control, I completely isolated myself from the world and experienced intense depression and anxiety. After numerous treatments and therapies that were either minimally beneficial or not helpful at all, I medicated the physical and emotional pain with alcohol and food. I was so embarrassed and ashamed, but it was the only thing that made me feel just a little bit better. Within five years I gained 150 pounds. My original mental shift was giving up on life. I merely existed, waiting and wanting to die. I retreated from everything so much that I rarely to never left my house, even to just open the front door for fresh air.

In December 2006, the second shift occurred when I came down with a bad stomach virus and was in bed for about 10 days. I couldn’t eat. I couldn’t drink. I couldn’t do much of anything because I was either in bed or the bathroom. It was during this period of time that I was alone with my thoughts, and I had some serious talks with myself! I knew that when I got better from this temporary stomach problem, I had to make a decision…continue down the self-destructive path I was on or try to get my dystonia better managed and my weight and overall health under control as best I could. I had a choice to live or keep slowly dying from my horrible lifestyle. I chose to live. I knew that there had to be a way for me to get better and I wasn’t going to give up this time. That’s not the kind of person I had ever been my entire life. This little stomach virus provided me with the time and space to take stock of my life, offering me a window of opportunity I had to jump through.

Can you tell our readers about the accomplishments you have been able to make despite your disability or illness?

After recovering from the stomach virus, my very first and most important accomplishment related to my illness was finally accepting that fact that I was in the darkest hole of my life from 2001 through 2006. I denied and avoided this reality as much as I could. Coming to terms with this is what fueled everything thereafter.

I decided to learn with all my strength how to be as healthy as possible. After lots of hard work, I lost 150 pounds and learned to better manage my dystonia symptoms using a variety of different therapies that I dedicated myself to religiously. After making such dramatic improvements, I was asked to share my story in a dystonia magazine. The response was overwhelming, which led to helping others pretty much all day by email and phone. I then decided to become certified as a life coach. I was doing it already, so I decided to make a career of it.

I also always felt there was a great lack of information and resources for people with dystonia, so I decided to write a book about it. I published Diagnosis Dystonia: Navigating the Journey in 2015, which is by far the most comprehensive book about how to live effectively with all aspects of dystonia, and even other health conditions. To give an idea for the lack of information available to us, there have been less than a handful of books written since then on the subject, all of which are memoirs rather than practical, self-help, “how the hell do I live with this ridiculously horrible condition?” type of book, which is what mine is all about.

As time progressed, I felt like I needed to write more, and for a much broader audience, so in 2021 my second book was published, called Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. Adapting to adversity is something I have been doing for the past 20 years in ways that far surpass any other challenges in my life prior to that, and I wanted to share what I had learned with others, offering strategies for how they could also use their life challenge(s) as a source of great personal growth. This is also what I do every day one on one with my life coaching clients.

I am slowly becoming a motivational speaker, having been the keynote speaker at a few events, one of which was the first ever national dystonia symposium in Canada. Being from the US, this was a great honor. I have been on international radio shows and podcasts and featured in various pain and neurology magazines.

I became a regular writer for several online health publications, all of which I do as a volunteer. I have written over 100 articles for various print and digital health publications and keep an active blog on my website. I also volunteer as a support group leader for the Dystonia Medical Research Foundation, serving as co-administrator of a group with close to 10,000 members.

While dystonia threw me off course for a while, it has been the most significant thing to ever happen to me to change my life in incredibly meaningful ways. As much as I wish it never happened, I am so grateful for the many lessons it teaches me every day. I believe that this mindset is one of the keys to my ability to cope as well as I do. I went from literally living on the floor rolling around in pain for years wanting to die, to someone who has made a new life for himself filled with meaning and purpose by helping others overcome their obstacles. My life has become a mission to educate and raise awareness about the nature of living with adversity, above and beyond just health problems.

What advice would you give to other people who have disabilities or limitations?

I think we all have a desire to live as well as we can regardless of whatever challenges we have, so the most important thing, I believe, is to be patient with the process. 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 from 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. Dystonia has been my greatest challenge, but also my greatest teacher.

I encourage you to shift your perspective about “the fight.” Many of us with a health problem often talk about “fighting the disease” (or “disorder” based on one’s preferred word). I think this mindset can makes things worse. The more we fight against it, the more power it has over us; the more strength and control we give it. Instead of fighting against it, embrace it as a part of who you are and then FIGHT THE DESIRE TO GIVE UP ON YOURSELF DURING TOUGH TIMES. To me, this is the real “fight” and a far more productive battle. It also releases us from being so angry. Anger churns out stress chemicals which make our symptoms worse. So, by fighting against it, the problem will always win. As counter-intuitive as it may sound, if we can learn to let go and find peace of mind with whatever is “right” or “wrong” with us, we give our body a better chance to heal. This is when we win the so-called fight. When I finally began doing this, about year 10 after my diagnosis, my life dramatically changed for the better.

I have learned so much about so many things living with dystonia and pain: perseverance, patience, compassion, courage, strength, humility, and a never give up attitude. I have greater acceptance of my vulnerabilities and limitations, my relationships have been enhanced, I value everything and everyone more, I have more compassion for others, increased connection to others who suffer, a greater appreciation for life in general, not at all materialistic, better able to live in the present, and a deepening in spiritual beliefs. I always had these qualities, but now they are more prominent in my life. I hate dystonia and chronic pain, but I try to live in gratitude for what I have good in my life, no matter how little or how much. This was the missing link for me that makes coping so much easier. I also learned by doing this that there is a heck of a lot more right with me than wrong with me, so no dwelling on the past or self-victimizing for me anymore!

Life always throws us curveballs and we have to learn to adapt to changes. This is often when the greatest learning in our lives takes place. We can look for the opportunity or we can close our eyes and be angry, keeping us imprisoned. That being said, look closely at what your health or other challenges are teaching you. Rather than be a victim, use the struggle as a springboard.

None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?

Hands down, this is the easiest question to answer. My Mom and Dad. They are my heroes, having been my rocks through every battle I have ever faced in my life. I could talk about them and all they have done for days and days, so instead, I would like to answer this by sharing exactly what I wrote in the Dedication of my first book.

Mom and Dad, this book is for you. You saved my life. I would not be here today if you did not step in when I developed dystonia. Without your love and support to improve my health, this book never would have been written.

Long before dystonia entered my life you were always there, sharing smiles during the fun times and tears and hugs during the difficult times. When dystonia entered my life, without hesitation you made tremendous sacrifices and did everything in your power to make my life as comfortable and tolerable as possible. You never had the retirement you planned, as the majority of your energy was put towards caring for me when I was very sick.

Your compassion and generosity are such that I could never possibly repay you for all you did and continue to do to support me. The most I can do is keep dedicating myself to being as healthy as I can be, pay forward the many gifts you have given me, and share with others the lessons you taught me.

I am so proud to be your son and hope that I make you proud to be my parents. Thank you from the bottom of my heart for your strength and all you do for me and everyone who is fortunate to be a part of your life. I am forever grateful and love you both immensely.

How have you used your success to bring goodness to the world?

Through all my books, articles, blogs, interviews and speaking events, and numerous conversations and emails with people over the world, my wish is to provide hope and practical information to make their lives better. I hear wonderful things from people about being inspirational and how I have helped them, but I don’t relish in that too much. I just feel I am doing what I should be doing with my life, which is helping others to the best of my ability because I believe that is what we should all be doing with our lives. I don’t look at myself as anything special. I am just another person doing the best he can, learning and sharing along the way.

I have come to learn how my challenges can be turned into fuel to personally grow and support others on their unique journey. I feel my life has become a mission to help as many people as I possibly can who are struggling with dystonia, chronic pain, and anything else that is causing them any form of suffering. I feel I have a duty to pay forward the many gifts that I have been given to help me get to where I am today. My goal is to prevent anyone from having to go through anything I ever did, and if they are in that dark place, to let them know that there are people who understand and that there is a lifeline to get out. My goal is to teach people how to go into the storms of their lives and learn to dance in the rain, so to speak, rather than resist the storm. No healing can take place when we live with hypervigilant resistance.

Can you share “5 things I wish people understood or knew about people with physical limitations” and why.

1. Many people with a chronic illness feel very unsettled and fearful, and as if no one could ever possibly understand their suffering, so they feel completely alone. Please listen to us with an open mind and heart, without judgment. Don’t try to fix us. We just need you to be there and listen to us without judgment.

2. Please don’t assume how I might be doing based on how I look, because how I feel is often worse. Just because I may look fine most of the time now compared to when I was morbidly obese and my head was locked in a turned position towards my right shoulder, I still have pain and other symptoms that are not visible. The assumption that I am cured based on appearance is far from the case. I am light years ahead of my darkest days, but still have challenges that need tending to every day. Because we don’t often look how we feel, people sometimes think we are making up our pain and other symptoms when they can’t see them, which is very demeaning and isolating.

3. It is very important that I have a feeling of accomplishment, especially physical. This is HUGE for me. Don’t assume I can’t do things, so before helping me, please ask. If I can do it, I want and need to do it. When I need help, I will always ask. I am not shy about that at all. Every day I set a goal to do at least one physical thing on my own. It is usually a small creative project that motivates and excites me. Some days I can do a lot more than that one thing, but I always do that one attainable thing. I feel more valuable when I can do this.

4. With a chronic illness, there is no recovery time that anyone can quantify. It isn’t like a broken ankle where you are in a cast for 6 weeks and then all better when the cast comes off. Chronic illness has a mind and clock of its own. We need to be incredibly patient with the ups and downs that are inevitable every day and ask that others also be patient with us…. And to not forget about us because we may not be able to do the activities that you might be doing. Keep inviting us to do things, even if we say “no” more than “yes”. When we are able, we will jump at the chance to do anything and everything. We desire this more than we can put to words. Don’t deny us that opportunity.

5. Not knowing how I will feel from day to day, or hour to hour some days, and what I am able to do is very stressful, making it difficult to make plans. Please understand how maddening and saddening this can be, and with that in mind, please never ever take your health for granted. Be grateful for EVERYTHING you can do.

Can you please give us your favorite “Life Lesson Quote”?

“When you change the way you look at things, the things you look at change” by Wayne Dyer. I heard this quote over 10 years ago and it stopped me in my tracks. My view about practically everything changed from that moment forward. It made me better put into perspective my suffering, and that of others, which motivated me to become a life coach and write my first book. To this day, I still return to this quote when I am struggling with something and need to shift my thinking.

We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂

Michael J Fox. Before Michael J Fox developed Parkinson’s, I always enjoyed all the characters he played on television and in the movies. In interviews, I always found him to be an interesting, intelligent, and engaging person. He always seemed like a regular guy, and as I have learned from a few friends who have met him, they confirmed this to be true. I also admire him for being a great husband and father. Before he embarked on all the amazing things that he and his foundation have done for Parkinson’s, as well as dystonia, I would love to discuss his coping skills and how he managed the life transition he had to make when his symptoms got to be severe, especially while living in the limelight. I would love to compare notes and find out how I can better help people in the movement disorder community. Maybe even do some education and awareness work together. That would be exciting! I also want to personally thank hm for all he has done for Parkinson’s, as I know several people who suffer with it.

This was very meaningful, thank you so much. We wish you only continued success on your great work!

You might also like...

Community//

Rising Star Lorenne Clarke: “I would love to encourage those in the Entertainment Industry to courageously share YOUR silent battle with chronic pain, illness, injury, or disease (#MySBChallenge) as a means to humanize and assign a voice to YOUR daily chronic pain”

by Yitzi Weiner
Photo Credit: Institute for Integrative Nutrition
Community//

How Changing Your Mindset Can Change Your Life

by Beth Doane
Community//

Robyn Ireland: “Just because it is, doesn’t mean it should be”

by Chef Vicky Colas
We use cookies on our site to give you the best experience possible. By continuing to browse the site, you agree to this use. For more information on how we use cookies, see our Privacy Policy.