Sunday, February 11, 2018

Anger and Frustration

Several times a year someone will contact me lashing out at the world because he has Kennedy’s Disease. He vents his anger, frustration and blame at me for being accepting, or at the research community for not having found a cure, or at God for allowing this to happen to him.

Surprise - surprise, I was not always accepting. In fact, several years ago, I wrote a short story based upon some of my experiences. The basis for the story came from "The Nine Stages of Grieving" published by the University of Buffalo. When I read the story the other day, I realized it was not very good. It was, however, a sincere account of my perspective as I transitioned through most of the stages.

Since everyone is unique, the stages do not necessarily come in the order described below. 

It is difficult for you to accept your own condition. As a result, you will deny the reality of the disease and make excuses for your falls, cramping and fatigue.


Once you are convinced that you have the disease, reality sets in. You keep your thoughts to yourself, but find it hard to think of anything else. When asked what is wrong, you do not want to talk about.


The "Why me?" stage. You are angry at what you perceive to be the unfairness of the situation and you may project it at others, especially loved ones. This is a frustrating stage for family and friends because it follows the period when you were not talking.


At some point, you will attempt to bargain with some sort of deity. You will probably offer to give up something in exchange for the return of your health. Family and friends notice a remarkable change in your attitude.


You may find yourself feeling guilty for many things you did, or did not do. Or, you might feel embarrassed for all the emotional pain and financial stress you are and will be causing your family. You often apologize for things no one else remembers. In addition, if you have a daughter, you are the reason why she is a carrier.


You may at first experience a sense of loss. Mood fluctuations and feelings of isolation and withdrawal may follow. Encouragement and reassurance by others will not be helpful. Your family and friends become concerned. They will try to reach out to others in an attempt to help.


As you go through changes in your capabilities, you might become reclusive and not engage with anyone. You believe no one understands what you are going through, leading to feeling alone, isolated, and afraid.


When this stage arrives, it does not mean happiness or bring comfort. Instead, you are now able to accept and live with the reality of the situation. Life once again moves forward. You find that you can easily admit to yourself and others that you have the disease. You might even tell yourself, “I can live with this.”


Eventually, you will become mentally and emotionally comfortable with your condition. As the thought of it becomes less painful, you begin to look to the future and realize there is life after Kennedy's Disease. You embrace special moments in life with family and friends.

At the end of my nine stages, this is what I wrote:

"As with most everything in life, time heals most wounds. Many of my initial fears did not materialize. I reached out to a community of others living with the condition and found I was not alone. I learned that people were accommodating and would be there to help. Instead of being a burden, I was still valued as a husband, father, grandfather, great grandfather, friend, and business associate. Just as important, I found I still had something to contribute to the world.

With this knowledge, I discovered something that had been missing recently in my life – Hope."

This is my story, what is yours?

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