Please don’t ever take your health for granted
The other day I ran into my oldest niece who will be 28 in a few months. It made me reflect on my life around the same age, which was when I developed dystonia. I was 30. Currently she has a great job as a teacher that she loves, she has a beautiful new car, she is involved with the man she plans to marry and they are building a house, she is in great health, and she feels her life is finally coming together. She is on cloud nine with her whole life in front of her. This is exactly how it was for me around her age until all hell broke loose with my health and I lost everything.
At the time, I had just returned to school for my masters degree in counselling. I noticed minor symptoms of neck stiffness and muscle twitches which rapidly turned into severe muscle contractions, powerful involuntary head turning and twisting, and breathtaking pain that never went away. The pain was such that I could not sit or stand for more than 10 or 15 minutes and I gasped when I spoke because it felt like I was constantly being injured over and over so it took my breath away. It was like a power drill was penetrating the base of my skull, neck, and shoulders. I literally lived all day long on my floor rolling around trying to find some level of comfort. Talk about life turning on a dime! Everything was right in front of me, just like it is for my niece, and then I hit a wall that I never saw coming and the life I had was gone in an instant.
I lost everything I had and was able to do. I could not work, drive, cook, clean, walk very easily, travel, do anything active, etc. I lost most of my friends and had to move in with my parents because I was financially and physically broke and could not function on my own. I became completely dependent on the help of others. I lost everything I knew about myself and it all happened in a blur. To this day I still don’t know where most of belongings went. I think to good homes, but I was so lost in pain, nothing was clear to me; nor did I even care. I just wanted relief. Actually, I just wanted life to end and in many ways it felt like it did.
I went through intense suffering for many years, medicating myself with alcohol and food to where I gained 150 pounds (see before and after below). I have since lost all that weight and I have been rebuilding my life from basically scratch. I’m still broke, I have a 20 year old car held together with duct tape, and I need help from family for various things because I am still not fully able to support myself. I am grateful to be able to live on my own and have wonderful people in my life (I am also grateful for that shabby car that gets me where I need to go and is paid off), but it is in no way near the life I planned or envisioned. The happy, excited me that is now present in my niece with her zeal for life was gone in a flash, which can happen to ANYONE at ANYTIME so please don’t take what you have for granted!
My dearest friend from college beat cancer several years ago and then on her recent trip to the doctor they found that it had come back. One of my closest coaching colleagues may soon lose her mother due to a recent stroke. There are so many more examples like this, but my point is simply that we never know what might happen from day to day, good or bad, which is why it is so important to be so focused in the moment, cherishing as much of it as we possibly can. We must keep in mind that we are only promised right now; this very moment. So while it is important to plan for the future, don’t ignore right now and make the very most of TODAY. Let tomorrow take care of itself when it gets here.
I know that if you are suffering with pain and other challenges, this is very difficult to do, but I promise that if you can find some way to find some form of joy, or at least be in the mindset of looking for joy, it will ease your suffering. People often ask me what helps me manage my symptoms the most, and to be honest, I don’t know because I do so many things. However, one big thing is changing my mindset from being so angry to one of intense gratitude for everything I have, regardless of how many things I have lost in my life and how much physical and emotional pain I may suffer. This reduces my mental tension which reduces my physical tension. It has taken years and is most certainly a process, but I have learned to better let the past and the old me go, and embrace who I am today with passion.
Prior to chronic pain from dystonia, I never really appreciated what life offered me. Hopefully I have learned and will continue to learn from this experience and not take things for granted the way that I used to. Even though I have improved significantly in many areas of my life, including my symptoms of dystonia, I still suffer with difficult health challenges. I am starting to climb the ladder out of the deep dark hole that I lived in for so many years. It is a slow process, but it is happening.
I have done some pretty cool stuff in the past several years, such as writing a book that was recognized by the Michael J Fox Foundation and featured in Pain-Free Living Magazine and Pain Pathways Magazine (Diagnosis Dystonia: Navigating the Journey). I have also spoken at a couple dystonia events around the country and am so honored to be the keynote speaker at a dystonia symposium in Canada in September. This is also my first time ever leaving the country.
I also became certified as a life coach to help others suffering with health challenges, and I lost the 150 pounds I gained that I mentioned earlier. I have also had over 50 articles published in print and online magazines. This is some pretty cool stuff! It is not the life I expected but it is the life I have and I am damn proud of how far I have come under the circumstances. I could have choosen to let myself wallow with a suffering mindset or find a way to enjoy the life I have and continue to work hard at making it better. I choose the latter route and I hope you do as well.
I don’t look back in regret, but it sure would have been nice if it didn’t happen. Then again, maybe it was supposed to so I could learn things about myself and do things that are meaningful and hopefully help others along the way. I don’t pull the strings so I don’t know. All I know is that if I believe and accept that everything happens for a reason, whatever comes my way is easier to navigate.
If you are a person who rarely to never gets sick or hurt versus someone who lives with a chronic health condition, never ever forget the feeling of being sick so you can appreciate just how lucky you are when you feel well. Never forgetting how it feels to be in pain or to be sick will teach you to better enjoy just how wonderful it is to have your health and your abilities to do whatever you want in life. Cherish it! Not all of us are as fortunate.
Going back to my niece; I know that she will face many challenges, but God forbid what happened to me ever happens to her. Seeing her made me reflect on the devastation that took place in my life at the about the same age and it breaks my heart to even think of this happening to her or anyone else. But the reality is that we never know what’s going to happen to us today or the next day. We are only promised moments in life, so no matter what you are living with, no matter your struggle, do your very best to find joy and peace right now. Whether you are a super successful, everything is going right in your life type person, or someone who has a storm to deal with, never ever take for granted what you CAN do. Honor yourself for every effort you make to be the best you can be and make the most of what you have, never taking anything in life for granted.
Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). He 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 (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
Excellent article. We must remember the hundreds of people out there hoping to improve the lives of those with a chronic illness.
Thank you for this. My husband recently got diagnosed with Dystonia. Given there’s lacking of support and knowledge about this MY, although he tries hard to hide it, he feels like the diagnosis is similar to a death sentence. I shared this with him and hopefully, it’ll help him look at this from a more positive outlook. Thanks again Tom. I don’t know you but I can’t say thanks you enough.
Juliana, you are very welcome and I sure hope this helps your husband. I also felt like it was a death sentence, which it certainly wasn’t after I learned more about it. There are many options available to him to manage his symptoms and get his life back. I encourage you to get a copy of my book which will help him better understand all that comes with living with dystonia and how to deal with it in a constructive fashion. There is a link on this website for it or you can get it on Amazon. Best wishes to you and your husband.
Tom, Reading your article made me feel how low we can get and feel the hopelessness that we will never have a life again. You have a wonderful way with words that makes me walk in your shoes at the beginning of your diagnosis. Like you I have survived the loss and realize how lucky I am to have a life and dystonia did not kill me. It only changed me. I really appreciate how far you have come and it inspires me to do better. Thank you for being a role model.
Thank you very much Sandra. I really like the way you said how dystonia did not kill you. It changed you. Same with me and in so many good ways that it is hard not to be grateful for much of it. But it took a little while to get to this point. It is certainly a process. I like how we can find strength and courage in sharing our stories. We are definitely not alone which is very comforting. Thank you again!
Thank you, Tom, so much for what you said, it is so true! Recently, my husband (who is my ‘caregiver’ as well) was diagnosed with Non-Hodgkins Lymphoma. He has just started treatment. So, I am now his caregiver as well as a person living with Cervical Dystonia (diagnosed in 2002). Yes, every single day is truly precious. Best to you.
Barbara, living with a health condition is tough enough, let alone caring for another. I have so much respect and admiration for you. Please give my very best to your husband and may you both be a support to one another through these tough times. I think what you are experiencing is a great example for anyone reading that time is precious and every day is to be cherished.
Tom, I have chatted with you on FB and believe me, you’re story moves me. I don’t have Dystonia. My husband (soon to be -ex) does. He has hidden it for years. And he was willing to throw me and our family away for the sake of ‘relief’. I can’t begin to tell you how his pain has now been transferred to myself and our kids. I’m NOT GIVING UP. My prayer is some day, he and I can stand with you and share our testimony…of Faith, Hope, Trust and LOVE of a God this far more in control of this thing we call “life”. You inspire me Tom. I’d love to tell you my story personally.
Hi Kathy. Thanks for your message. I am so sorry about the situation with your husband. I can’t speak for him, but I know from my experience that pain can make us think and do things we otherwise wouldn’t. I had a lose of clarity for many years when the pain took over my life. I’m so glad to hear you are not giving up. Let’s hope those around you choose to do the same. Many blessings to you.
Thanks Tom for that inspiring message. You are so right. We should self talk ourselves every day that things do happen for a reason and how we are thankful for things the way they are, not the way we think they should be.
I don’t know if you remember, but you helped me in my early challenges with dystonia. We corresponded a lot, and I am grateful for your help and guidance.
I have read your book and feel it is extremely well written and researched. It is a must read for anyone with dystonia or any chronic condition. Thanks again for the work you are doing. Ed Nelson
Hi Ed. Very good to hear from you! Thanks very much for all you said. Thanks so much about the book. If you get a chance, would you mind sharing a review on Amazon? I hope you have been keeping well and thank you for reiterating being thankful for things and the way they are versus fighting what we think hey should be, what I think is a critical component to coping well with anything in life.
Thank you very much Michael.
Tom Seaman always reminds me to look at life with a more positive perspective. We do struggle to find the the “joy” moments but if you can start with just a little each day, you win. Recently, I had a tough year… with recognizing this I realized I needed to start writing down the moments or things that I am grateful for, this has helped. Yet, I’ll admit I need help from a variety of sources, friends, family, and deeper honesty with myself. These groups, articles, and some of your honest admissions help me to find the “gems” for the day. Thank you all. We’ve got this.
Thank you Sarah. These serve as reminders to me as well. I need to write about this kind of stuff to keep myself focused on the mindset that is so easily forgotten even though it helps me cope. You sure have had a tough year and have gone through so many of your challenges with grace and determination, something we would all be wise to look at with admiration and inspiration. Thank you!