The Nine Stages ... Learning to live with Kennedy's Disease

Several years ago I wrote a fictitious short story based upon some of my experiences of accepting Kennedy’s Disease. The premise of the story was founded around "The Nine Stages of Grieving" published by the University of Buffalo, but slightly changed to reflect the experience of finding out you have Kennedy’s Disease. I feel that whether it is death or some life-altering event, everyone (yourself and your family) going through the event has to experience most, if not all, of the stages mentioned below.

Denial
At first, it may be 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 and occasional fatigue.

Shock
Once you are convinced that you have the disease, a period of shock (reality) sets in. You keep your thoughts to yourself, but find it hard to think of anything else. When asked what is wrong, you just don’t want to talk about it to anyone.

Anger
The most common question asked during this stage is, "Why me?" You are angry at what you perceive to be the unfairness of the situation and you may project and displace your anger onto others. This is always a frustrating stage for the rest of the family because it follows the period when you were not talking.

Bargaining
At some point, you will attempt to bargain with some sort of deity. You will probably offer to give up an enjoyable part of your life in exchange for the return of your health. The family notices a remarkable change in your attitude and can’t quite figure out what happened.

Guilt
You may find yourself feeling guilty for many things you did, or didn’t do, prior to, or because of your disease. Or, you might feel guilty for all the emotional pain and financial stress you are and will be causing your family. You often apologize for things no one else in the family remembers happening. And, if you have a daughter, the question constantly nags at you as to whether you passed the defective gene on to your daughter.

Depression
You may at first experience a sense of great loss. Mood fluctuations and feelings of isolation and withdrawal may follow. Encouragement and reassurance by others will not be helpful in this stage. The family becomes very concerned and the spouse will normally try to reach out to others in an attempt to help.

Loneliness
As you go through changes in your social and business life because of your disease, you may feel lonely, isolated, and afraid. You would rather not do anything but sit around and watch TV or sleep.

Acceptance
Acceptance does not mean happiness or bring comfort. Instead, you are now able to accept and deal with the reality of the situation. Life can once again begin to move forward. You find that you can easily admit to yourself and others that you have the disease and that there is no cure, but also saying things like, “It’s okay … I can live with this.”

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

The ending of my story follows:

"As with most everything in life, time heals most wounds. Many of my initial fears of being helpless didn’t materialize. Instead, I learned that if I use my head, I could still do many things. I also found that people were very accommodating and would go out of their way to help. Instead of being considered a burden, I was still valued as a husband, father, friend, neighbor, and business associate.  And, I found that I still had something to contribute to the world.

With acceptance, and armed with the additional knowledge that researchers were working diligently towards finding a treatment and potentially a cure, I discovered something that had been missing recently in my life – Hope."

Faith ... hope … whatever you want to call it; I just know it is important and a critical part of moving forward with our lives.