I have lived with chronic pain from dystonia, a neurological movement disorder, for 23 years. The first 5 years my symptoms were so severe that I was barely able to get out of bed… where I proceeded to spend the day on the floor rolling around trying to find some level of comfort. I was not able to sit or stand for more than ten minutes before the pain dragged me to my knees. I also dealt with severe anxiety, depression, and isolation. I also became morbidly obese because of very poor lifestyle habits trying to cope with this complete life change.

I was formally very active in private business, social events, athletics, travel, and pretty much anything a healthy person would do. I was involved in many physical activities such as baseball, basketball, racquetball, tennis, golf, hiking, swimming, martial arts…you name it. I derived great pleasure from these activities. When I could no longer do them, I felt worthless. I felt a deep sense of loss and had an identity crisis for the next 5 years.

After much trial and error, over the years I was able to find some symptom management protocols to where I was not suffering in pain so much. Much of this is outlined in my 2 books, Diagnosis Dystonia, Navigating the Journey, and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. As the years have progressed, have been able to improve upon these positive changes, but my life is still not like it was before dystonia. I am still not involved in many of the activities mentioned above, which is where I excelled the most and where I felt the most joy.

It might sound like I couldn’t possibly have any fun in my life as result, but that is not the case at all. I replaced many of those old activities with new activities where I am able to derive as much pleasure. These are things such as writing, gardening, and photography to name just a few. I was not all that interested in these things before dystonia, and I began to wonder what it was about them that gave me so much joy. What I realized is that I approach these new activities the same way I approached previous activities, and consequently, achieve the same outcome.

Take sports for example. Along with the physical activity of playing, what I really enjoyed most was the mental game. I thrived on the challenges that sports presented, and the need to be creative and strategic to better my skills against an opponent. As much as I enjoyed the sports themselves, what I really loved most was the thinking aspect of playing them, similar to a chess match. For anyone familiar with sports like golf or baseball, it takes a tremendous amount of thinking, strategy, and concentration prior to the event or game itself, as well as during the event or game. This is what I loved most. I also became a life coach, helping others with their health challenges. It is such an exciting and meaningful experience to help someone improve their life. It requires me to use my experiences, education, and thinking skills to uncover and discover what somebody else most needs to help them find their bearings and move in a better direction. Nothing gives me more joy.

For many years after developing dystonia, I did not do anything that challenged my strategic, creative mind. After years of sitting around bored to tears from being so sad, I began doing some creative writing. From there, things steamrolled into other creative outlets. I now take on projects and hobbies that challenge me and make me think, and I do things that stimulate my creativity and mental edge to improve; the exact same things I did with sports and other activities I am no longer involved with. Now I get the dopamine, serotonin and endorphin rush from my new activities and every day I feel joy, excitement, and motivation again.

If you are in a similar situation where you are physically unable to do activities you once could, what is it that you enjoyed so much about doing those things? How can you achieve the same outcome doing new things? What are you able to do now where you can be just as enthusiastic and passionate as all those previous activities?

I didn’t think like this right away. It took a while to get there. Honestly, I never previously thought about what I was even getting out of my activities or what I was missing so much. I just loved them so much and was so upset I couldn’t do them anymore. That was my only focus. I couldn’t wrap my head around the fact that I was so disabled. All I kept asking was, “why me?” and “how did this happen?!?” I’m sure many of you can relate. What I didn’t realize was that I could look at these things differently and replace the joy I was getting from them with other things and get the same feelings where I felt meaning and purpose again.

Not that we all have the same approach to things, but in order for me to get through this, I had to admit to and confront my suffering so I could process the traumatizing changes in my life. What I eventually realized is that I had to become very introspective and question what I had emotionally gained from my involvement in those lost activities. Once I figured that out, it set my life on a positive new course.

Just because life might be different now does not mean that we still can’t find things to make our lives very fulfilling. Although I was an avid golfer, very much into martial arts, and almost a professional baseball and football player, I don’t miss any of those things. I don’t care if I ever play sports again. If I do, that will be fine, but it’s just not who I am anymore, and for those who know me, this will sound crazy because I was always playing something. But I have become a different person who does different things, and by accepting the new me I have been able to replace the old me with new things to enjoy and look forward to doing just as much as the old me.

Some important questions to ask ourselves are, “what are things I can no longer do because of my health condition and what was it that I got out of those things that fulfilled me?” And… “what can I do right now within my physical abilities where I can get the same positive feelings from these new things?” Then, do your best to replace your old activities with new ones where you achieve the fulfillment (feelings) you desire. In other words, instead of trying to bring back the old you, create a new you. Choose one thing, no matter its size, that you can find a way to become excited about. Then just go with it and see where it takes you.