Learning to be okay with what we view as not okay
When I developed dystonia in 2001 at the age of 30, my world completely changed. I went from a private business owner, athlete, a graduate student pursing a master’s degree in counselling, someone who traveled, and basically an all out go-getter, to almost completely disabled. I could barely sit or stand for more than a few minutes without never ending, excruciating pain shooting through my skull and radiating down my neck, shoulders, and back, so I literally rolled around on my floor all day. I also gained 150 pounds and was morbidly obese. I have since lost all the weight as you can see in the photos below.
My neck and body were also distorted from severe, involuntary muscle contractions, the main feature of dystonia. Everything I was doing with my life ended. I lost my will to live. Depression and anxiety were my only “friends.” This lasted for over 5 years until I found numerous ways to help manage my symptoms that I still utilize to this day.
For those of you familiar with my story, I have come a long way from some very deep, dark holes. Much of this I document in my blogs, articles, and book. But my book and other writings are not just about what I do to help myself, which involves many things too long to list. It’s about the many options we have available to us to help manage symptoms, both physical and emotional, and how to cope with the struggles of everyday life, be it health or something else. Parts of the book are about me and my experiences, but the majority of it is practical tools and strategies to help reduce suffering. But confronting our suffering can be a monumental task. We prefer to shield ourselves from pain and trauma, which I did for many years to my detriment.
One of the most popular self-help books of all time is called, The Road Less Travelled, by M. Scott Peck. It documents how confronting and solving problems is a painful process, which most of us attempt to avoid. This avoidance results in pain and the hampered ability to grow both mentally and spiritually. Dr. Peck provides strategies for confronting and resolving our problems, and how suffering through changes can enable us to reach a higher level of self-understanding.
The opening paragraph of the book clearly states, “Life is difficult. This is a great truth, one of the greatest truths. It is a great truth because once we truly see this truth, we transcend it. Once we truly know that life is difficult-once we truly understand and accept it-then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.”
With this in mind, when I am faced with a challenge, I like to say, “how do I make the best out of a difficult situation?” Even though we may be suffering with something, we can still have a fulfilling life if we are open to something new, and if we choose to face the pain rather than hide from it. Life always has options if we choose to see the options, versus seeing a wall in front of us. This is why I like this question. It puts me in a proactive, versus reactive, mindset.
Our health and other circumstances do not have to rule our lives unless we let them define who we are. As is often heard, it is not what happens to us in life that matters. It is what we do with it that matters. I made some very poor choices in my life, especially when I got sick with dystonia. I’m sure you have as well. We are human and that is what happens. It’s totally okay. If we use the outcome of these choices to make better choices going forward, then we are growing. This is how we find meaning and purpose in our lives.
I am not saying that this shift in thinking can change overnight or will change who we are overnight. It is a lifelong practice. Acknowledging the so called “baby steps,” which to me are giant leaps given some of the very tough circumstances people live with, is critical for us to see that our efforts are paying off.
When trauma occurs, we all need time to grieve and vent, so allow yourself to go through this process. Just be careful about anything becoming all-consuming where grief and other emotions rule your life. I want to make a special mention about emotions, especially anger because it is so easy to be angry when life doesn’t go as planned; if we live in a place of anger all the time, I don’t believe our mind and body are physiologically capable of healing or finding peace.
As lonely as life can sometimes feel when we are hit with any kind of trauma, please understand that you are not alone. There are people all over the world who are living with the same struggles. Reach out to them. Don’t be afraid to share your story. Educate yourself and educate others. Helping others is also a big part of helping ourselves. Do not lose contact with the outside world. If you are physically unable to get out, use social media to communicate.
Please also refrain from comparing your life now to how it was before it changed. Compare your life now with you at your darkest time in life. This is a very important. Many of us compare our lives to who we were before life changed. This is a mistake. One, it neglects who we are today and the efforts we make, and two, the true measurement of who we are is how far we have come from our toughest struggles. Not when life was easy.
Be kind to yourself. Self-care is critical to our well-being. When looking for outside help, do not leave any stone unturned because anything and everything, or anyone, could possibly change your life for the better. Most people I know who do well living with physical or emotional pain utilize a variety of lifestyle management protocols. Sometimes major changes need to take place. Be willing and open to all things.
Focus on the emotional pain you are experiencing just as much, if not more, than the physical trauma you may be experiencing. The mind-body connection is very powerful, and it needs to be addressed in order for us to be as healthy as possible. Emotional trauma feeds off physical trauma and vice versa.
As M. Scott Peck also says in his book, “Until you value yourself, you won’t value your time. Until you value your time, you will not do anything with it.” I didn’t value my time for years because I didn’t value myself. When I became sick I felt like a failure, so I didn’t do anything of value with my life. When I chose to value myself, my time became precious and I took better care of myself. This was the clincher for me. I had to learn to value who I was, no matter what was right or wrong, for my time to be greater utilized. I now use that precious time to make myself the best version of me I possibly can. This is the opportunity we all have every day. The only thing that matters is the first step we take out of bed in the morning. Then the next step and so on. Our days, weeks, and years are all built on moments. BE in the moment!
One final thought about self-growth that is so important. True nobility is not being better than anyone else. It is about being better than the person we were yesterday and all the days before, regardless of our struggle. It is the effort that matters. When we learn to live this way, we better flow with life. Resistance to what is rather than learning to work with and be okay with what we may view as not okay, as it says in the title of the article, will always increase our suffering.
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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.
Dear Tom,
I have generalized dystonia, and am 58 yrs old, but wasn’t diagnosed until 13 years ago. I have spent the last 13 years as my parents’ caregiver. I’m not sure what to do now. The dystonia is progressing, despite DBS and botox injections. How do I figure out who I am or what I am now?
Hi Karen- Thank you for your message. That sure is a lot going on. I am very sorry. I think it would be best if we spoke so please use this link to schedule a call. Thanks. https://tomseamancoaching.com/schedule-a-call-with-tom/
Thank you for e-mailing me. My skull and neck.we’re hurting me so bad I didn’t know what to do. I do have your book on kindle as well as a book.by 3 doctors regarding dystonia. I happened to see the article you wrote in Brain and Life which I saw by
Accident. I am going to go to a doctor who does acupuncture as your e-mail said to.take care of yourself and that is just what I am going to do.
Hi Patricia- I am so sorry about that awful pain. I used to get the worst of my pain in the base of my skull as well. It is a pain that is so bad that it is hard to describe. I sure hope acupuncture is of help to you.
Great support to everyone.
I appreciate that very much, Harvey. Thank you.
Thanks Tom. We all need a helpful reminder to be kind to ourselves and focus on how far we have come. The inner critic can get out of hand if we don’t stay positive, and being hard on ourselves helps no-one. Geting enough rest, good nutrition and gentle exercise are fundamental for me, plus meditation every evening, and spending time appreciating nature, and keeping in touch with true friends and loved ones. I often work while in excruciating pain so I try to give myself credit for this and take time to recuperate . No point being a perfectionist or comparing myself now to the girl I was before Dystonia .I have grown and learned so much, and managed to raise my son well, create my own business and buy my home and car, plus my relationships are authentic and healthy. Ironically, Dystonia has helped me become a strronger and better person. I still have plenty of tough days, but I pat myself on the back for getting through them, and I really appreciate all the little things and good days I took for granted before.
Hi Pauline- That inner critic sure can be tough! Sometimes I actually tell it out loud to leave me alone. I do many of the same things you mentioned for self-care and the one that really does it most for me is nature. I love the outdoors seeing and feeling everything. To me it is the ultimate place to get in tune with our senses. Good for you for patting yourself on the back. I have known you a while and the many challenges you have… and you deserve that pat on the back every day!