The Emotional Walk In Learning To Deal With Dystonia

As a Pastor, I have found an interesting connection between the grief that a person goes through when a death occurs, and the emotional struggles a person with a serious medical problem goes through. The first emotional event that I have seen at the loss of a loved one is shock and disbelief. It is as if the news is to much for the human brain to accept. I had a long struggle getting a diagnosis for dystonia. My struggle involved being labeled psychotic with a recommendation for internment into a psychiatric facility. My decision to seek a second opinion and not go to a psychiatric doctor caused me to be blackballed in the cities around me, and now I must travel to the other end of my state to see a neurologist. He diagnosed me with PNKD in a very short time, and then did test to prove his diagnoses. I will never forget when he told me I had Paroxysmal Nonkinesigenic Dyskinesia. Even though I knew, something was wrong this diagnosis of dystonia blew me away. All I could think of was my mom and the struggle that she has had with dystonia.
The second emotional event that I have seen people go through in dealing with death is anger. Disbelief leads to anger over an event that is totally out of your control. As I began to deal with the fact that I was losing control over my life I began to get angry. As I began to struggle with events it became obvious that driving was to dangerous to do. I had stopped being a fulltime pastor a few years early, and now I could no longer work a job. I have always loved being independent, and dystonia took all of that away. Great accomplishments for the day now included things like filling the dishwasher, and picking up the house. I was so angry with my body that refused to work the way that I wanted it to.
I have watched many people turn from anger to a deal making phase. In my case, I thought if I was a better person maybe this would go away. Maybe the neurologist could do something for dystonia even if it hurt me in some other way. It took me awhile to figure out that there was no magic pill that would cause this all to go away. My faith would not heal me. There were no pills to heal me. I had dystonia and that was that.
The next obvious phase is depression. At least that is what I have observed. Unfortunately in many circles depression is a dirty word. Some do not believe that it is a true problem, but something you should just be above. Realizing the fact, that depression may come in my opinion helps people deal with it when it does come. I have found in my life that depression is an ok place to visit as long as you do not live there. It seems in my experience that depression is like the teeter-totter I used to play on as a kid. Depending on what step I take next depression will hurt me or help make me stronger. Depression that leads to acceptance seems to make us stronger.
Acceptance is the place where I hope all people can reach. It is a place where you can take a deep breath before you deal with the next thing that comes along. It is not the place were nothing is wrong, but the place were it is ok that things are wrong.
I was surprised in my own life to find out that acceptance in one area of disability did not help me in other areas. New problems give me new opportunities to walk through these steps again. I walked through these steps each time I lost control of each part of my life.
In my life, my walk with God and my family and friend network has been a great help. I have begun to write small books about my struggles, and God’s help in my struggles. Every life is different and it is important that you find good doctors and counselors to help you deal with your struggles. What has been positive for me may not work for you. Take control of your health and find good local doctors who are willing to fight for you.