What I have learned from decades of pain and dystonia

July 20, 2024

As I reflect on my 23 years (as of 2024) living with dystonia and pain and other symptoms that changed my life in many ways, I want to share some of the things I have learned. I wish I didn’t have to go through any of it, but I can’t change what was or is. I can only change who I am now and the way I relate to tough times. This allows me to see that while there is suffering, there can still be much learning through these challenges. I want to share some of those things with you and encourage you to look for the silver linings in your life.

Patience– I often say that it takes a lot of patience to be a patient. How true this is! Heck, it takes a lot of patience just to be human if we are being completely honest. Having lived over 20 years with pain from dystonia, a neurological movement disorder, I have been forced to become a more patient person. It was not something I was very good at before and I am still a work in progress.

We have to learn patience with our bodies. Patience with our emotions. Patience with the doctors and nurses and other medical professionals, as well as having patience for the many appointments, often having to wait months to be seen by specialists.

We also need to learn patience with other people who might not understand what we are going through and the changes to our lives and choices we have to make because of our health condition.

If you can, look at all of these examples as good things. Patience is a very healthy thing to learn. It helps us to be more at ease and be more in the moment, which is vital for anyone regardless of their health status. Life is so unpredictable that we must learn patience to handle tough things that we didn’t expect to come our way.

Perseverance– I had to learn to persevere through challenges that were unimaginable until I was faced with them. There was a time when I could barely sit or stand for more than 10 minutes because the pain in my head, neck, and back were so bad from my dystonia. The perseverance it took to merely get a glass of water or go to the bathroom was a major undertaking. As the years have gone by and I have learned to better manage my symptoms, some things have become easier, but new challenges have taken their place. Had I not been forced to fight through those horrible years, the current challenges would seem insurmountable.

I have also learned to find new ways of doing things and creative ways to get through things that are still very tough. Perseverance is an ongoing battle of will and wit. The beauty of challenges is that we learn a lot about ourselves and just how much we can handle, which is much more than most of us think.

Courage– I’ll just cut to the chase and begin by saying that it takes one heck of a lot of courage to want to keep on living when dealing with an incurable condition that creates both physical and emotional pain that is often unrelenting and unbearable. For many of us, the simplest of activities have become major chores, and this can be cause for an identity crisis and feeling shameful.

Also, if you happen to have a health condition where your symptoms are visible, it takes a lot of courage to go out in public and be around others who might stare and in some cases, judge us. Not only judge our appearance, but judge the decisions we have to make to live as comfortably as possible, which very well might be different from the life we once had.

Sometimes this means that we have to break away from certain people or not involve ourselves with different activities that we were once able to do. This is a hard pill for us to swallow, and it’s a tough one for our loved ones to understand as well. But for those who don’t understand how we feel, imagine how difficult it would be for you if you were not able to enjoy all the things that you do now while watching others do them with ease. It is devastating for us. But, despite this challenge, we often muster up the courage to push through the pain and still do a lot anyway. Sometimes we push so hard that it makes us worse. This is because we wish for nothing more than to try and live a normal life.

Compassion– I can say with confidence that I have always been a compassionate person. However, I have become more compassionate after living with these various health conditions for so long. I have met so many people with the same health condition I have (dystonia) as well as many other health conditions. It’s amazing how humbling it is to see how people live their lives in such amazing ways while dealing with incredible challenges. I admire these people with passionate compassion and inspiration.

There was a time when I used to judge people that would complain about various aches or pains that paled in comparison to what I was going through. I realized how unfair this was and no longer look at it this way. We only know what we know based on our unique experiences, so what somebody else is going through might be the worst thing possible for them, even if it doesn’t seem like much to you. If anything impacts someone’s life in such a way that it steers them off course, I believe we are all on an even playing field.

The more we compare ourselves to others, or judge others for things that we might think is not a big deal compared to us, the less compassionate and empathetic we are being. When we do this, the more we become the judgmental person that others have been to us. Please think about this one very carefully.

No one has things better or worse. We all have different things, and experience and perceive those things differently.

Humility– I don’t know if things prior to 2001 prepared me for the devastating life change that came about when dystonia hit my life. But I can say that I have become quite humble to the power of the body and mind, and how it can work in our favor or work against us. There was a time in my life when I could pretty much do anything at all physically without too much difficulty. When that changed, a very humble person emerged who began to appreciate things so much more than ever before. I used to be able to run for miles and miles and play any sport under the sun. Now I am grateful when I can take a walk around my neighborhood, as well as other things that are far less demanding than what I used to be able to do period.

Gratitude– Where do I begin with this one… I never realized how much I took for granted in terms of my physical abilities until I lost them. I don’t feel bad that I took things for granted because I didn’t know otherwise. I feel bad that I didn’t know how great life was when I was capable of doing anything at anytime without a second thought, until it was gone. Now, almost every activity is planned with rest time before and after.

I have also come to appreciate people in my life in a different way. I have a greater spiritual footing than ever before. I see things in ways I never did before, or, see things I never previously paid attention to until I was forced to slow down because of my health. I am also grateful for my health challenges and the challenges that come with them. Without them, I never would have had so many opportunities I do now. As I often say, with every obstacle comes an opportunity.

Never give up attitude– Growing up the youngest of four children, I was always being challenged in sports and school and other things growing up. I’m really grateful to have had those challenges because they taught me how to battle and never give up, especially in sports against bigger and better opponents.

In all things, I am someone who strives to be better than I was. When any challenge came my way, I always tried to find a way through. When it came to sports and I was down, I used to love using my creative mind and physical abilities to see if I could outwit an opponent and rebound from defeat. This attitude stayed with me after developing chronic pain from dystonia. While I have had to step back from many things in my life or do them differently, I have never given up. I stare challenges in the face and always look for solutions rather than allow myself to become a victim of circumstances.

I hope some of the information was helpful. I also hope that no matter what challenges you are going through in your life, and I know some people are going through things far far worse than I could even imagine, that you are able to find some of the blessings in disguise. It’s not easy, but I think if we shift our thinking to this more often, it can offset the emotional devastation that physical challenges have on us.