Thursday, March 15, 2018

The Roller Coaster Ride of SBMA

This last week two people have emailed me expressing their frustrations and anger with Kennedy's Disease. I can understand why they feel this way.  

Zig Ziglar said, “Getting knocked down in life is a given. Getting up and moving forward is a choice.” Feeling overwhelmed is something most of us with Kennedy's Disease have experienced. I have often said that the mental and emotional aspects of the Kennedy's Disease are as difficult as the physical ones. 

Today's post is a rambling of thoughts on the mental and emotional ride we go on after being diagnosed with Spinal Bulbar Muscular Atrophy.

Frustration is the anchor that keeps us from setting sail. What an interesting comment. Until we can let go of these feelings, we cannot truly live.

We have to ‘let go’ before we can move on. Trying to hold on to what we were, or currently have, is a losing proposition, especially with a progressive disorder. It is one that will always end in disappointment and frustration. Letting go of something we cherish, does not happen overnight. It could be the most difficult thing most of us will ever have to do.

Fear is False Evidence Appearing Real. Part of the difficulty of accepting our current condition is the fear of what tomorrow will bring. Fear of what might become is most often the reason we do not want to let go. We want to hold on to today and even wish for that miracle that will bring back normalcy (as we knew it). H. P. Lovecraft said, “The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.”

Patience fosters acceptance and realism tempers expectations. I still get into trouble because I believe that I should be able to do something. If I would take the time to examine my current capabilities before beginning some task or project, I would be more accepting and comfortable with my current capabilities and expected results.

We judge what we do not understand. We tend to forget we are not the only people with problems. Thoreau said, "Could a greater miracle take place than for us to look through each other’s eye for an instant?" Be kind, for everyone you meet is fighting his/her own battle. It is easy to lash out when something does not go right. People do not wear signs explaining what is going on in their life. The person could have a heart condition, or just lost his/her job, or been in an auto accident that morning, or their child has cancer, or a spouse just passed away.

I will end today with another truism. Gautama Buddha said, "Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving and tolerant with the weak and wrong. Sometime in your life, you will have been all of these."

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